Getting to know you...

[TrishaG]

...getting to know all about you...

:hi: everyone!

As this board has grown and folks have come and gone over the years, I'm finding it harder to keep up with each of you and your precious dc's particular needs. A few of you I know and remember every time. Others who post less frequently (like myself ;) ), I find myself thinking, "I didn't know they had a SN child..."

I was wondering if you'd be willing to share a bit about your child(ren), your family, any therapy/special diet/etc that you all may find helpful. Kind of a roll call of sorts. Just thought it might be a good way to get to know each other a little better and perhaps connect with others in similar situations.

Can't wait to get to know each of you a little better!

[TrishaG]

I'm Trisha, mom of 3 SN kiddos.

**Our oldest ds, Ian, began separating himself from the crowd at an early age. Sorting everything, lining objects up by size/shape/color, etc. He was a difficult baby who didn't sleep longer than 3 hours at a time until he was well over a year. Lots of sensory issues. Ian couldn't stand tags touching him (still can't), and his socks had to be just so on his foot (still do). Then he shocked us all when he began reading at barely 3 - and was reading chapter books by 4! :eek: He was very verbal from an early age and very, very social.

As the years passed, we learned that Ian, like his father and maternal grandmother, has Tourrettes Syndrome and some 'OCD tendencies'. We chose to use Clonidine for 6 month or so, when he was around 8. For our family, it was a good choice and helped tremendously. He's now holding his own, ticing mildly and controlling the obsessive/compulsive tendencies...for the most part. ;) And yes, he's still ahead of the curve in most academics, math excluded. ;)

**Our 2nd child came along. Another difficult baby, but very different. Didn't like to be held, no eye contact, very few smiles. Very, very stiff baby who didn't roll over or crawl until well past the norm. Then we noticed she was behind in her speech, and becoming moreso by the day, it seemed. And there were sensory issues coming out our ears with her.

Finally, at 3, she was dx with a moderate - severe articulation delay. During this eval, however, the SLP was amazed to see the size of Bethy's tonsils. She ended up having tonsils and adenoids removed at 3.5. The ENT told us they were the largest tonsils she'd ever seen in a child. Bethany had had sleep apnea since she was an infant, but no one ever seemed concerned about her stopping breathing for 30+ seconds or her insanely loud snoring. The tonsils and adenoids had caused the muscles in her tongue and mouth to be underdeveloped as well.

After a good deal of speech therapy and a bit of OT, she's about where most 9 yr girls should be. She still struggles a bit with learning challenges. Her brain just didn't kick in as early as most, but it's catching up. She's truly the sweetest child I've ever laid eyes on.

**DS #2. Ahhh...Caleb. Caleb was our miracle after multiple miscarriages. I had a difficult pregnancy with him as well, & there was concern that we would lose him. He's our 'bonus' baby. :)

Caleb was born with a nuchal cord that is believed to have caused some brain trauma. He had some rather significant developmental delays, both fine and gross motor, as well as a severe articulation delay. Speech therapy and a bit of OT have helped form a wonderfully passionate boy who's funny and whimsical and a joy to be around. Unless he's upset and turns that passion against everything in his path. :eek: We're working on that. :perplex:

At 6, he now is nearly caught up with his peers developmentally. Gross motor skills are good. Fine motor is still coming along. He feeds himself now with a fork/spoon. It's messy. :eek: But he does it. :thumb: We still deal with some potty issues, but those are coming along as well. He has some food allergies, but we're able to keep those issues at bay rather easily at this point in his life.

There you go. My novel on our family. I'm looking so forward to getting to know you all, please share!

[Hollie in SC]

:hi: Trish!!

I'm Hollie, mom to 3 lively boys. :lol:

Eli is 9yo and has some food and seasonal allergies, but they are blessedly mild and fairly easy to handle. We are sooooo thankful!

Kyle is 8yo and has asthma and allergies. We still don't feel like we have the asthma under control, but continue to work on it He also seems to have some other mild issues that we haven't figured out yet. :unsure: He may have a mix of ADD and perhaps even mild auditory processing problems. It hasn't slowed his academics, thankfully. We're still observing at this point until we can determine if it is a real issue or just Kyle.:unsure:

Noah is 4yo with Down syndrome and also has a colostomy because of a birth defect. Currently, he is at a wonderful special needs preschool in the next county. He has awesome therapy there as well. I think he'll be going 5 days/week this year. (We find out next week if they have worked out transportation.) We just keep praying. The Lord hasn't really led us to homeschool him at this time. It has all been very hard to figure out, but God has really guided us.

My mommy-heart wants things to be just like it has been with his brothers, but we're just praying every step of they way. It is our desire to keep him in K-4 for two years and then "K" at his current school. After that, I'm not sure. So we just keep praying. :)

[Jo in PRC]

Hello Ladies,

Our Anna is 8 years old and her special needs are a result of a brain tumor that was diagnosed when she was 4 years old. It's been a puzzle trying to figure it all out, since she has so many different challenges. She has a lot of sensory issues (but to be fair, those could be inherited instead of from her tumor), physical challenges, learning problems, and some behaviors that look like ADD.

The good news is that as she matures and her vocabulary grows, it's been getting easier. Many people have told me they had no idea after spending time with Anna that she had any issues. I always think "Are you kidding?!" :lol:

We will fly to St Judes in Memphis this next Sunday and she'll have an MRI on Monday. I'm really hoping that the tumor will be reduced because of the cancer treatment she went through in March and April this year. It's been so hard to wait to see if there are results.

This board has given me hope and encouragement and great resources as we've walked this path with our littlest. Thank you! :group: ~Jo

[Alice R]

:hi:

I'm a speech pathologist. I work in Early Intervention. I've been working with special needs kids for exactly 20 years now. :eek: (I might delete that last sentence) :lol: Currently, I work with a clinical psychologist who diagnosis PDD so I'm kinda into that area at the moment. My husband is an OT.

My son had developmental verbal dyspraxia but made a full recovery. :clap: He has severe fine motor delays. It impacts his school work so much. You live and learn on this journey...I never knew how bad fine motor skills can be for a student. Noah has a great personality and disposition about it. But if he has to write more than one sentence, he is almost in tears. :wornout:

My oldest son was exhibiting tics in 11/07 which really looked like Tourettes. Recently, they have really subsided. They pop up once in a while. I'm just watching him. And praying. He is doing great now but it is the fear of where might this progress that got me so worried. He was turning his head, moving his eyes and clearning his throat. Now he just clears his throat which no one notices but me.

Blessings. :)

[Kayla M]

Hello, I'm Kayla and I have 2 boys ages 16 and 8. Yes, it's a big age gap. We had a miscarriages during those years.

Dakota has always been advanced in everything. He is doing fine with school.
He does have eating issues and only eats bread and cheese. He spent 5 weeks in a feeding clinic and still came out only eating bread and cheese. He also throws up a lot.

Elijah has eosinophilic gastroenteritis and has a feeding tube. He gets neocate formula through his tube. He has good days and bad days. Some days he can only lay on the couch. And he also throws up a lot too. We keep trash cans handy! He had speech delay and has spent years in speech therapy. He is caught up on his speech, believe me he talks non stop!
Elijah has spent a lot of time in the hospital over the years. It seems as he would make progress in reading he would end up in the hospital and he would lose what he had learned. It's always been a one step forward and two steps back. So he has been a struggling reader and a very reluctant writer. Elijah has also lost the vision in his left eye. He is very farsighted in his right eye and wears a + 5 glasses. We have been told to forget about the left eye, work on keeping the vision for the right.
Elijah goes to the literacy clinic at our university twice a week for the past 2 years. That has helped and we are seeing some progress now.

We try to carry on with life and make the best of what we have. We do not let Elijah's disability stop us form living. We do slow down when he is ill, but we live life to the fullest. Our calendar is always full.

[Cheryl in SoCal]

Howdy:hi:

My boys (14 1/2 and almost 13) don't have any special needs so I'll jump to my girls.

DD#1 (5 years old) was born with cataracts that were removed when she was 4 weeks old, shortly following surgery she developed severe glaucoma and nystagmus. She has been through many surgeries to control the glaucoma (I think the last count was 14 with 53 or 54 times under anesthesia), most from 18 months to 3 years of age. Her glaucoma has been stable for a little over a year but her right eye has been severely damaged and her left moderately damaged by the glaucoma when it was out of control. The nystagmus (which is on the mild side now) impacts her vision the most but the glaucoma is what threatens it. Despite everything she has very usable vision, her near vision is 20/60 & 20/40 and her distance vision is 20/90 & 20/60. So far she shows no signs of any developmental or learning disabilities. We will likely need to use magnifiers and a few other assistive devices when she is older and fonts get smaller but for now she can easily read large print, what she needs/doesn't need in the future can change if/when her vision changes.

DD#2 (20 months old) was born with a unilateral cleft lip/palate. Her lip, nose and gum line were repaired when she was 7 months old and her palate was repaired when she was almost 10 months old. She is a little behind in speech but has recently been making significant improvements. So far no ST, they didn't think she needed it yet at her last cleft clinic (15 months old) and they will reevaluate her at her next cleft clinic (24 months). She is making all the sounds that are difficult for cleft kids to make so as long as she is making progress and not extremely behind I don't think she will need ST. So far no developmental or learning disabilities. Obviously, I'm not schooling her yet, at this time I don't see her needing anything special accommodations/etc.

[Linda]

Trish, I never knew we had so much in common! :) and :group:

My oldest was a hard baby, didn't sleep more than 15 min. at a time and screamed, screamed, screamed when she was awake. :( Very hard on a first time mama w/ no family or friends around for support. Around 3 months, the screaming began to subside, but the sleeping issues never did. She still is up at all hours of the night.

As she got a little older I began to notice in our playgroup she would separate herself from the rest of the kids. They would be on one side of the room doing parallel play and Emily would be on the other side of the room, w/ her back to the group looking at books. She always has been obsessed w/ books, still is to this day. As a toddler/preschooler, that's the only thing she'd play with. Other than a slight delay in gross motor skills, she was on target for everything else. She was advanced in her fine motor skills and verbal skills as well as showing unusually high intelligence(my mother called it scary smart). She would say & know things that your normal two year old just didn't say or typically knows.

As playgroup progressed through the years, I saw the differences between her and her peers growing larger and larger. I was beginning to look for reasons why she would melt down and be in tears whenever we were around the other kids, why they wouldn't include her and why she didn't seem to want to be included. I'm sad and sorry to say, those weren't my stellar mothering days. I was very hard on her and it makes me :cry: thinking back. It was here in the SN's room that I began to do research on Aspergers and Sensory Integration. I thought she had a mixture of the two and finally my pediatrician began to see it too. We went through numerous evals only to be told, there's something not quite right, we just can't figure out what it is. On the other hand, my friends who were therapists (OT, Speech) and worked w/ kids on the spectrum told me "No, she is not an Aspie." :unsure: She qualified for 3 months of OT for her sensory issues, which helped tremendously. :clap: She went from jumping out of her skin when someone brushed up against her to tolerating it (not liking it, but tolerating the sensation). I learned how to touch her for the first time. We never did kisses, just smushes (invented by her), which she still does to this day.

She always had some type of tics, which I thought were AS stimming. They gradually got worse and more noticeable and she has since been diagnosed with Tourettes. I think at the moment, that's our biggest obstacle. Trying to control the tics. They don't bother her but they can be a bit distracting to others, especially in a public setting. It makes me very glad we homeschool.

As she's gotten older, her sensory and Aspie traits seem to be lessening. She is still easily excited in a group situation and becomes a bit spastic. When she's around peers, it's glaringly obvious, she's not one of them. She is awkward and doesn't even know it. She's very outgoing and tries to make friends with everyone. I've always had to watch that with her. It wouldn't be uncommon as a 3 year old for her to wander away at the park to go talk to a group of strangers. I caught her once on her way to talk w/ some men playing basketball. *yikes*

Despite all her differences, she's a remarkable girl. She is so talented and extremely smart. Art, music and school work come very easily to her. We just continue to work on emotions (what they are and what they feel like) and I try to coach her in social situations. Oh, an odd thing, for all the crying she did in her first 4 years of life (and it was a ton), sometime in her 5th year she stopped crying all together. She will be 11 this fall and hasn't cried for probably 6 years. She doesn't understand why other people do cry. Don't really know what that means, but I thought it was kind of unusual.

My 2nd dd lost some speech around 3. She began slurring her words and not communicating as clearly as she had been. Nothing that the drs. thought was too bad, but it was something I noticed. She began to mimic her sisters tics as well. We thought everything was going along fine, besides those two things I mentioned, until I tried to teach her to read. Before she was official school age, she would sit in on our FIAR stories and answer a lot of the questions. She was 3 at that time. I thought she was an auditory learner the way she could remember details from the story and retell them back. Once she was 5/6, all of that had changed. She no longer could tell me what happened in a story. Her short term memory had seemed to disappear. Teaching her was a nightmare, especially following on the heels of her older sister who didn't really need to be taught.

We continued to struggle along and she began reading, we found our niche in her learning of lots and lots of repetition. Then, two years ago she began to become agitated and upset when we'd throw things away. At first, we thought it was just drawings or things that seemed "important". Then I discovered her stash. :( She had been hoarding trash in her bed. She had gotten to the point of not being able to throw anything away. Our worst moment was when she was sitting on the toilet, unable to get up because she couldn't bear to throw the toilet paper away. :cry: It was a horrible, horrible time. She was diagnosed w/ OCD and through some kind rowers here who sent me their info on OCD w/ children and lots of prayers from many places, we were able to help her over this hurdle. We learned some coping strategies that we employ and are teaching her to use for when she begins to feel an OCD episode emerge.

This same dd still struggles w/ school work to the point, she's behind. She's finishing up her 3rd round of Vision Therapy, which has helped quite a bit but not completely. Our next step will be to see if a neurodevelopmentalist can help us come up w/ some type of program to get her brain working together. Her tics have become worse and unlike her older sister, they do bother her and she says they actually hurt. She's extremely sweet, caring and sensitive. She sees the smallest detail and draws beautifully. She's a big nature lover so can usually be found searching for insects for her collection or just staring at the sky. Most of her drawings are nature drawings, very technical detailed drawings. eta after rereading Trish's post about her dd and the similarities to our first two children, Anna's tonsils are HUGE, ginormous! She is a snorer as well. Drs. will comment on them, but have never recommended surgery. She still tends to slur her words and I'm often saying to her 5 to 10 times, "what???"

My 3rd dd seems to have oral sensation problems. I've been so busy w/ the older two, I haven't really delved too deeply into getting her checked out. She used to be a great eater, but now is extremely picky and gags on a lot of textures. She's also begun sucking on her fingers and chewing on her clothes *yuck*. None of my kids sucked their fingers, starting this habit at 6 took me for a loop. Other than that, she's smart and fast. She loves to do school work and whips it out faster than I can give it to her. One of our concerns, is that she'll be passing up her sister in some areas very soon. She was diagnosed w/ asthma last fall and we struggled all winter to get that under control. She's currently doing fine w/ no inhaler, but I'm anxious about the fall and winter months coming.

My 5 year old, so far appears to be perfectly normal in his development! Thank you Lord. :) He's funny, lively and shows no signs of tics or anything else atypical!

My 2.5 year old, we're keeping our eye on. He reminds us a lot of our oldest as an infant (we put him on zantac as an infant so he actually slept and stopped crying inconsolably). He's just a little too intense. It may just be we're getting a taste of 100% boy (my older boy is more on the quiet, sensitive side) or he's a sensory defensive kid too. We've delayed his MMR as both dh and I just never felt peace about giving it to him. All the rest of the kids are fully vaccinated, he's our first to not be. This was huge for dh (an MD) to agree to, and it was really his idea, which is why I wasn't going to argue. He teeters so close to the Autism spectrum in many areas, we just didn't want to take the chance. Like I said, his ignoring us and blank stares, wild rampages and screaming could just be strong-willed boy or it could be something else. Having several atypically developing kids, we're a little gun shy.

We try to follow Feingold as much as possible. We've seen a huge difference when we let our kids have things that aren't on the Feingold list. We've just never been able to go 100% due to laziness on my part!

Whew! That was a long intro to my world. :)

[TrishaG]

eta after rereading Trish's post about her dd and the similarities to our first two children, Anna's tonsils are HUGE, ginormous! She is a snorer as well. Drs. will comment on them, but have never recommended surgery. She still tends to slur her words and I'm often saying to her 5 to 10 times, "what???"



Hey Linda...tht's very intersting...PM me or email me, please. :kiss:

[Tracy from ON]

I'm a newbie here's our story...

I have 2 children both with Noonan Syndrome.

First my DD had open heart surgery at 2 1/2, she's been wonderful since. She is in school:blush: but we feel it's the best choice for her right now. She's in a wonderful small country school. The school K-8 has 108 children. The values they teach in this school and the home feeling is just wonderful. Her class this coming year will have 14 children with a teacher and an educational assistant. I did consider last year pulling her out and homeschooling her...we will consider it again if we see a need.(a bit of a confession there)

Back to her needs..we are working through many behavioural issues right now. We are still trying to figure out if it's Noonan Syndrome related or just the fact she's almost 6, don't know. She will be getting physio therpy again soon because her feet turn in. She has bowel and bladder control issues she has been potty trained and can mostly control her bladder. She has no learning issues at all...she'll be entering grade 1 in September and reads at a gr 2 level. I thank that on reading to her from day 1. We are still learning so much from her.

My DS is 2 1/2 also has Noonan Syndrome. We have had many more medical and developmental concerns with him. In his 2 1/2 years he's had 2 surgeries and has been in hospital 8 times anywhere from 4 days to 15 days. He had a feeding tube for a while because he was a failure to thrive baby (I will always hate that term). He has asthma and allergies as well. He has speech therapy, physio therapy, OT, infant development, feeding team. He still has many oral adverisons. He has bowel issues as well which we thought we had under control for the most part but as of this week things are getting worse again...more surgery in the future for his bowels maybe:unsure:

They are both the love and joy of my and my husbands lives. We are very blessed to have them. They are both miracle babies because before and after both I had miscarriages.

I have and always believe that God only gives us what we can handle. Some days I wonder how strong He believes I am because some days are really hard.

I found FAIR when researching for DD, I am starting B4FAIR with DS in September. My hope is that is will give him and myself time to forget everything else in our day and just sit with the books. We have taken ideas from HSS and so far he's enjoyed Brown Bear, Brown Bear and Frieght Train.

[Chris-AL]

Trish,

:group: :group: to all the ladies who have shared:hcry: .

My son, Noah, had 3 years of speech therapy for moderate to severe articulation difficulties. This past year he tested outof therapy!:clap: He was adopted at almost 2 and had learned the Tamil language in India. I waited a while to start therapy because I wasn't sure how much was starting over with a new language and how much was a real problem.

Last year my younger son had some physical delays and a tight heel cord. He ended up in physical therapy for 4 or 5 months. He has more than made up for the delayed walking. Our doctor also suggested speech therapy at 18 months, for VJ, but I told him I wanted to wait. At 2 years he has 60+ words and lots of two word combo's, so no speech therapy. Praise the Lord.

I think this will be the first year in 5 that none of the kids will have therapy! I probably don't qualify to be on this board any more.:lol:

[tracy]

I've lost my reply twice. Rats!! :angry:

I'll reply later ...... after I compose myself :(

[TrishaG]

I've lost my reply twice. Rats!! :angry:

I'll reply later ...... after I compose myself :(

Oh man, I hate it when that happens.

Take a deep breath and try again, Tracy. We'll be here waiting for you.

:group:

[MelissaAL]

I'm melissa Mama of 2 Special Needs girls.

**
Freja was born in 2004 at 38 weeks via emergency induction because of fetal stress. She did super well until 4 months old, she had her 2nd set of shots. 4 hours later I wasn't able to wake her up. She spent a week in the hospital and after she got home everything was different. She no long held her head up or anything. She didn't sit up on her own till about 7 months started crawling at 10 months and didn't walk till 18 months. When she did walk she had issues. Her behavior was very odd to me. She would flap her hands and freak out at the weirdest things and have the most VIOLENT fits. She didn't speak anything understandable until the age of 3 and then her interacting wasn't normal. We went through EI in which she was diagnosed as High Functioning Autistic (I'm going to have her re-evaled soon as I think she's an Aspie) and has mild CP (Cerebral Palsy) we found out after an MRI. She's had complete genetic testing done and it's all fine.

My second born Raeden was born at 36.6 weeks and from the get go something was weird about her. Her nose sounded like it was constantly stuffy and she would throw up excessively. No one believed me until at 4 months she stopped breathing. She was diagnosed with Severe GERD, Asthma, and Sleep Apnea. Many sleep studies, meds, swallow studies, apnea monitors, breathing issues and Endoscopy and PH Probe later. She's grown out of the GERD and Apnea but still has pretty severe asthma

I'm so very blessed to have these girls in my life. And I'm reminded of that every day when I look at photos of my angel baby Calypso

Freja is beginning Pre-K HS this year :)

[Jen M]

Can I post even though my child is still not formally diagnosed sn?

Well I will, and if I am out of place let me know and I will delete my post. :)

Hello Everyone :hi:

My name is Jen and I have 3 sweet blessings or as our ped says 'Unorthodox Children' :lol:

My unique and giggly first dd Elizabeth was overall a pretty good baby. She (like many first babies) was always clingy, had nasty colic, and was easily over stimulated. As she grew she was always 10 steps ahead of the books and peers. I figured I was an awesome parent! ;) We have since concluded her to be mentally gifted. But with this advancement came challenges. She would do very strange things when she was bored (still does), and much of it resulted in her getting in trouble. She started reading chapter books during her 3rd year. The only way to keep her happy is to keep her mind busy. Sounds easy? NO! I had/have to schedule everything to the minute. She learned to tell time very early and has had to have clocks in every room. As she has grown older we have noticed that she has excellent recall and continues to excel in her mental abilities. However, over the past year we have started to notice that she has a specific need to be balanced. If she moves one hand, she HAS to move the other one exactly the same. If she has an itch on one foot, she HAS to itch the other. Everything has to be balanced. She has recently voiced many sensory annoyances, which make her want to do things as a reaction. If her sister rubs to cloths together, she feels like she needs to punch her. Thankfully she alerts me of her terrible thoughts and does not follow through on them. We are trying to figure out how to help her deal with the sensory things. Right now we are just removing her from the source. This little girl's mind has never stood in the way of her making friends. She is not super social, but is just singled out by children. She never stops giggling. She loves to laugh and makes me smile everyday. :kiss:

Our spirit filled David was born a healthy happy boy. However, he was born with the most painful newborn rash the nurses had ever seen. He was beat red and looked painful. He has been rubbed down with so many cremes that his skin is so white to this day. He actually stands out next to his sisters. As an infant he just never caught onto things like his sister. He could not handle feedings well, choked on his own spit-up, and had many breathing issues. We later learned he has reflux, allergies, eczema, and asthma. The asthma took a year and many ER trips to diagnose. He received PT for 14 months for Tort. and wore a helmet for 3 mo for Plagio. He has been in ST since he was 2 yrs and just finished at 5.5 yrs. He may have to have more, but has to wait until he is more developmentally behind to qualify. As he has grown we have noticed that he has issues with attention, extreme emotions and focus. He has been diagnosed with an anxiety disorder - which one is still in the observing phases. He can not recall well, and forgets things that happened two minutes prior. He can not get a sentence out and stumbles over almost every phrase. He has been known to stutter. He gets lost in his own head. He also has high sensory issues. He has seen one specialist who says he has a problem, but could not diagnose more than 'At risk for PDD'. And the others say wait until he is about 8yrs old. He was just denied services from the state last week due to clerical errors. I was told I should appeal. This child is so into music and rhythm. He 'tunes' into beats and enjoys singing. We hope to feed his need to sing by signing him up for classes in spring. With all concerns that have come with this child, he knows Jesus better than anyone I have ever met. He is just so filled with the spirit! I know God has great plans for this little guy. :kiss:

Lastly, my precious Emily. She was our blessing after two miscarriages. She was born with an inability to make bowels well on her own. Many tests were done, but none confirmed anything. She spent her first year+ on Milk of Mag, Prevacid, and very restricted diet. As she grew stronger and bigger, she was able to make bowels on her own. However, even today doing #2's frighten her sometimes. She also wore a helmet, like her brother, and kept hers on for 6mo. She has Asthma like her brother. Overall though, we have referred to her as our 'normal' child. :lol: She is just sugar and spice. :kiss:

We are also a Feingold family. Thanks Linda for introducing us to that. :) This diet has helped tremendously with my older two.

This was fun. I am enjoying reading about your wonderful children.

[LindainOK]

We have 3 still at home and 4 married or in college. The girls at home joined our family by adoption (from China) at 9mos, 7.5 yrs, and 12.5yrs and are now 10.5y, 9.5y, and 14y.

The newest addition, 14y old has been fostered by us for 14mos while receiving humanitarium medical treatment from an eye institute. We learned about her from our 7.5yos paperwork and met her during that dau's 2006 adoption. Last month, she and I traveled back to China to complete her adoption into our family.

We knew, before fostering, that she was missing one eye. That's all the orphanage included in her report. Once home, we discovered more. She had untreated, 20/400-500 vision in remaining eye and her eyes are very small and both had severe ptosis (she held her head upward inorder to see). Left leg is 1" shorter than the other. She walks with legs slightly bowed and feet spreading outward--like a very sore cowboy ;) . She has received some awful treatment from other children because of her unusual walk and her small eyes appearance. Worst was from a 5yo girl who was yelling loudly in the pool, "You're ugly and weird!" over and over. :sad: The Dad was plugged in to his phone and clueless. All I could think to do was walk over and tell the little girl that Casi is my dau whom I love very much and she will be a good friend to play with. That seemed to work.

I tried to teach Casi last year and it was sssllooww. In China, Casi was never allowed to attend school and is dev delayed because of neglect and poor vision. In China, you are either perfect or not; there's is no acceptance of mental or physcial defects. In fact, that culture looks on all birth defects (no matter how small) as a bad omen. Chinese gave me and Casi a wide berth during our recent trip while our other Chinese daus were fussed over by the locals during their adoptions. Luckily, the locals couldn't see the huge surgical scar on middle dau's chest from her heart surgery...

We recently went to Jan Bedell for a neuro-developmental evaluation and will begin the program after I recover from a major surgery scheduled for next week (I had b.cancer surgery last year just before I traveled to bring her to our home for fostering)

I do not feel that we have near the challenges that many of you have daily. Yet, I often worry that we are able to help her because I don't wish her to be a burden, later in life, for our other children (not that any of them have ever voiced this or even shown this; they like her much). Sometimes I've felt overwhelmed because this is not anything I know about and often feel so inadequate to help her grow and learn. And it's hard and different to "fall in love" with an older child. That's not bad, just an adoption reality.

That's when I remind myself how God has worked out many details ahead of time and that He is in control. In 2003 I joined Jan Bedell's Little Giant Steps email list because of a sibling group we hoped to adopt (one had severe abuse and neglect). Over the years, as I continued to receive the regular LGS emails, I often thought of unsubscribing but never did. Now I see that God was slowly readying me to parent Casi. I pray that I can learn from Casi all God has planned for me. She is a very kind and generous person inspite of all she lived thru in her birth country. It may sound silly, but I know that I will be a much better person if I learn this lesson.

Thank you for the help many of you have offered to me.

Sorry if I'm doing this wrong; I just noticed the recent comment about Official Diagnosis. We don't have that. We just recognized that things weren't "right" for Casi in many areas and we sought help. Honestly, I really don't want labels, but that's a another conversation.

[TrishaG]

Thank you all for sharing your stories. I know there are more of you out there, please share!! This group is such a blessing to me.

Sorry if I'm doing this wrong; I just noticed the recent comment about Official Diagnosis. We don't have that. We just recognized that things weren't "right" for Casi in many areas and we sought help. Honestly, I really don't want labels, but that's a another conversation.

Linda & Jen,

I think there are many of us here without an 'official dx'. There are several more things we could be looking into for our youngest, in particular. The labels that we would more than likely get would not help him or us at this point in our lives, so we've opted not to pursue unecissary testing at least for now.

As a family, we've learned to seek help when needed, we've learned to adapt where we can, and we've learned to trust God through it all.

:group:

[mariah m]

My family novel is...

Samantha, 16 has asthma and scoliosis.

Lucas, age 12 has neurofibromatosis type 1, dyslexia and processing problems.

Rebekah, 9, was a preemie, developmentally delayed, vision problems, scoliosis and now dyslexia, dysgraphia and dyscalculia.

Nicolas, 7, Down Syndrome. AV Canal repair at age 2. Entering 2nd grade public school.

[Heidi in IN]

Hi!

Here's our family in a ;) nutshell:

Dd was diagnosed with tracking problems while in 2nd grade at a Christian school where she transposed everything--letters, numbers, words. So we did Vision Therapy. This was my 1st exposure to learning problems. The VT solved her tracking problems, but she continued to struggle with spelling and esp. with math so we pulled her out to remedial tutor her for the spring semester and summer (with the intention of putting her back in in the fall but we fell in love with homeschooling;) instead!) We've since decided her math is dyscalculia since she has always been 3-4 years behind. The crisscross pattern of double digit multiplication took us 3 years to master, fractions took 5 years, and long division took 3 years. I didn't even know there was a word for her problem. She also struggles with organizing information into her brain in a way that makes retreval of that information easy. Her gifts are art and creative writing.

Then along came ds. He is a whiz in math (he'll start Pre-Algebra this year in 6th grade) but couldn't read above a K/1st grade level even in 4th grade. Spelling was impossible and handwriting was painful. We did VT with him in 2nd grade with only miminal results for all that money. We've since discovered that what he has dyslexia and dysgraphia and a bit of dyspraxia, all words I knew nothing about until last year. I went to a Dianne Craft seminar last fall and learned a lot. Found out because ds was a premie he could be missing essential brain fat. The Brain Integration Therapy and Fish Oil and gymnastics have helped him to gain at least 2 years in reading (as well as balance and muscle control) and he's writing in legible cursive now.

So that's where we are today---still struggling (and crying and mourning and begging God for answers and direction), but making progress, which is a lot better than the standing still we'd done for years. :thumb:

Dd has gained so much confidence, that she wants to do Algebra this year so we'll take it slow and do it as much hands-on as possible. If it takes us her Jr and Sr year to complete, I'll be very pleased and proud indeed!

FIAR made LEARNING soooooo much fun with all of its hands-on, read alongs, learning through discussion and esp. through its lack of worksheets. If it hadn't been for FIAR, we'd have given up long ago! Dc would have gotten discouraged and quit trying YEARS ago if we hadn't used all the levels of FIAR to LEARN while we struggled with the academics. FIAR's approach separated LEARNING from schooling for us and helped them to maintain (and for my dd, redevelop after 2 1/2 years of formal schooling) a love of LEARNING.
I will forever be indebted to the Lamberts and this wonderful group of ladies! :hcry:

[Katie]

What a wonderful idea, Trish! Thanks so much for starting this thread! :)

Our family was blessed through adoption!

Tanner is 14 and has been diagnosed with ADHD, bipolar tendencies and Asperger's. Life is a daily challenge, but we trust God has allowed it for a reason. One of the blessings of having a child with special needs is that when you see the fruits of your labor it is really evident! He is on Concerta 36 mg a day and seems to be doing pretty well on that. We have sought counsel from two of our pastors and continue to pray that Tanner will not inherit the bondage from his heritage. We also see a psychiatrist who is great at building Tanner up while helping him see his need to take responsibility for his actions, set goals and take steps toward those goals.

We have needed respite care for a long time and, since my husband has been diagnosed with multiple sclerosis and stress makes the symptoms oh-so-much worse, we have recently felt led by the Holy Spirit to call a couple from church who are foster parents for troubled teens. She called yesterday and shared that they have been praying and feel led to help us by providing respite care for Tanner, and we are now in the process of setting that up. Praise God! \o/

We also have a 7yo daughter, Lydia, whom we adopted from South Korea who beautifully displays many of the fruits of the Spirit. She is truly an angel sent by God and brings much love, joy, comfort and sweetness into our family!

Currently, I am reading The Five Love Languages of Teenagers by Gary Chapman.

Thank you all for your ongoing love and support! It means so very much! :hcry:

[Jill S]

Great idea, Trish! I don't always remembered all the SN we have here, so it's always good to have a reminder. Let's see what we've got around our house:

Alex: I don't generally write about him having a SN, but we feel strongly that he was alcohol-exposed in utero. We see this in his poor memory and poor judgment in lots of situations. He has struggled a LOT with reading but over the last couple of years has progressed quite a bit and even seems to enjoy reading occasionally. His great strength is his willingness to help. He loves to feel needed and is always looking for new ways to prove that he is responsible. I would be hard-pressed to send him to school because his poor judgment is often manifested in the people toward whom he gravitates.

Vera: She has Down Syndrome and was adopted from Russia when she was 5.5 yo. Her gross motor skills are incredible; she loves to play sports. Her speech has improved tremendously over the last year, to the point that lots of people can understand her now, instead of only us. Vera's greatest strength, from my point of view ;) , is her love of her mommy! OK, so that isn't her greatest strength, but I sure love it. Her unconditional love for me makes even the hard times with her very sweet. Her greatest strength is her strength and athleticism, as well as her enthusiasm for life.

Emma: She also has DS but was born to us. Her speech skills are the best of all the DS girls we have. We get lots of compliments on her speech. She has decent fine motor skills, as well, although she is clearly behind. She has been having lots of fun drawing lately, which is fun to finally see. Her greatest strength is probably her winsome personality; she can't seem to stay mad or grouchy because a smile always peeks through and ruins it for her. :lol:

Ella: Yes, more DS, and Ella was adopted from Colombia when she was 2. Ella has wonderful fine motor skills; she can eat an entire meal and not make a mess at all. She hasn't shown much interest in coloring, but she definitely hold pencils correctly. She has almost no speech, but she is signing. We need to work on more signs with her, though, because I know she has a lot more to say and she clearly understands everything. She also has hypothyroidism and some GI issues that can usually be controlled with diet. Her greatest strength currently is persistence; she keeps going until we understand what she wants/needs.

Actually, I think the greatest strength of all of my little girls with DS is their drive and desire to do the things their big brothers and sisters are doing and they try very hard. They don't tend to get discouraged the way their older siblings do, either. Obedience is still a challenge because their stubborn nature can make them want to keep going until they are done. Oh well, so does mine. ;)

[Esther-Alabama]

My little family is a diverse one in the special needs spectrum....

First, my oldest ds was just diagnosed with dyslexia. We have suspected this for a long time and just had him tested. Thankfully, it appears mild to moderate with spelling and writing being the most effected, though he reads, his reading is effected as he attempts to read harder and harder things. He is a precious child and so responsible and sweet. He is a performer at heart and while still getting used to the idea of this diagnosis....we are sure his strengths will overcome his weaknesses.

Then we are blessed with ds number 2 who is absolutely the opposite end of the spectrum. Paul is very academically gifted, taught himself to read at 3.5yrs and works ahead of grade level in all areas. He has almost caught up with his brother in reading and this is the main reason I wanted to test John Henry. Paul can be difficult to teach though as he already knows everything, kwim??

I have decided to do seperate things with them this year, so I can be sure I am meeting their extremely different needs!

So far our other two little ones are perfectly average!!

[JennyO]

I'm Jen,

I have 5 beautiful children. My oldest is our SN child. Autumn will be 8 in September and has a rare genetic disorder called Wolf-Hirschhorn Syndrome. The chances of having a child with this genetic disorder are about 1 in 50,000, but recently I heard another parent say 1 in 100,000. My pregnancy with Autumn was uneventful until the very end, when they noticed that she was lagging in growth. They didn't know why she was so small, and even then I was a bit worried...of what I didn't know.

Autumn came 2.5 weeks early. I had a normal birthing experience with her. I expected her to be around 6 lbs. But, when the Dr. announced her weight at 4 lbs. 1/4 oz., my heart sank a bit. She was very healthy and only had to be in the hospital for 5 days to get her body temp. up and for jaundice. She came home at under 4 lbs.:eek: She too was a very difficult baby. Didn't sleep well at all for over a year. Cried so much and so hard. I was exhausted for the first couple of years of her life. After her brother came something happened and she started sleeping fairly well, unless she was sick...PRAISE THE LORD!:clap:

We got Autumn's diagnosis of WH at about 5 months of age. At about a year, Autumn started having seizures. We really were expecting this, as most kids with her syndrome have them. But, nothing could prepare us for the reality of it all. The hospital stays and yo-yoing emotions of trying to find the right seizure meds. Ugh. Autumn has also tended to be very chronic with ear infections and severely prolonged colds, etc.

The ear infections have really lessened with numerous sets of tubes, and her seizures are pretty much under control with meds. She almost always only has seizures when she gets particular viruses now. But, seems to be improving slowly with that as well. Our prayer is that she will outgrow her seizures all together someday and that she will continue to grow a strong immune system.

Autumn is mainly non-verbal, is small in stature, and is moderate MR. We were never for sure if she would walk, but she learned to at 4.5 and continues to surprise us. Lately it as been in an all out sprint! Autumn's true self is very happy and loving. Her negative behavior almost is always linked with seizure activity or some other physcial discomfort.

Life can be amazing wonderful with Autumn, or amazingly difficult. Our plan is to homeschool her long term at this point. She is at a pre-school level in most things. Her favorite thing in all the world is being read to. She is starting to enjoy new things...slowly. This is so exciting to me.:) As, I often read from other parents with kids who have WH...they seem to learn very slowly throughout their lives. So, only the Lord knows what's in store for our Autumn.
*********************
I am not at all labeling my almost three year old with SN at this point. But, he came a month early when he was born and was in the NICU for almost 2 weeks on a ventilator. He had PPHN. He was released as a completely healthy newborn. He had follow up appointments up until he was about 9 months. He has some quirky things about him. He is very preoccupied at times with staring at his hands and examining them. He hates having socks on and doesn't like tags (but neither did I as a child!:lol: ) I cannot quite put my finger on it, and maybe I'll never need to. Yet, he is very loving and bright. But, also different. My dh is having a very hard time connecting with him lately. It makes me kind of sad, but I am just hoping it's a season and it will all work out. I just keep praying about it.

[Trish A]

Great thread Trish! I never have been able to keep up with everyone, but always wanted to. (maybe this should be a sticky?)

I think we've all read and over read about my Sethie, but for future newbies...

Seth doesn't have a dx yet. Maybe he will at his eval on Monday...I can only hope that having a label will help us to be taken seriously.

Seth (and his twin, Malachi) was born 7 weeks early and spent 9 days in NICU. Three weeks later they had RSV and stopped breathing. I did CPR (mostly just rescue breaths) and kept them going till the ambulance arrived. The ER staff assumed I had done something to them, but that was quickly proven wrong when they stopped breathing again in ER. They were both intabated and rushed to a bigger hospital in Tulsa. Seth spent about 19 days on a ventilator and was weaned off only to have to be re-intabated a day or so later because one lung collapsed and the other super-inflated, pushing his heart completely to the other side of his chest. The nurses, I believe were preparing me for the worst.

That night I prayed and knew I could do nothing but surrender him to God...not give up, but surrender the pseudo-control I was clinging to.

The next morning his lung had popped back open and all was well...or so it seemed.

As they began to wean him again from his vent, they also began to wean him from the drugs that had kept him in a coma for the last 3 weeks. I waited and waited for him to open his eyes...when he finally did I knew something was terribly wrong. There was zero eye contact (his brother made eye-contact immediately coming off of his drugs) and his eyes shifted rapidly for at least 24 hours non-stop. I asked every staff member that came in why that happened, but I didn't get an answer until the next day when a RT walked in on me crying to my DH that they weren't telling me anything. She left and a nurse came in and said that the dr. told her that if his eyes had been pulling to one side, she would be concerned, but since they moved back and forth, it was fine.

Exhausted and ready for it to be over, I accepted that answer.

As months went by back home, I noticed that Seth wasn't making eye contact and that he was always looking around the room as he nursed...well all the time really. I told myself that he was "inquisitive". It wasn't until Kennedy asked me one day back in June, "Mommy, why does Seth always look past me and never looks at me?" that I let myself accept that there was a problem...I was like, "You see that too?!"

The eye doctor says his eyes are "structurally fine" but he can't explain why Seth isn't tracking. He goes back in Oct. for another exam and brain scans.

The PCP has been nothing but a roadblock to getting Seth care. That's what we are dealing with now. We are hoping to fire him Tuesday (after getting dx from someone else). We just know God will provide just the right dr. for him. (If you click on Seth's name in my sig line, you can see his blog I just started keeping up with this craziness.)

More recently, we have discovered that his head circumference is much too small. Still looking for answers to that as well.

I am so thankful to be taking the first steps of this journey with the support of you all! What a blessing you have been to us!

[AmyinWI]

Hi everyone!!!:hi:

I have a 17yo dd with Asthma, ADD and visual perception problems , she has always had a tough time learning, and reading- but tends to make up for it in her artistic and creative talents! She is currently taking meds for asthma and aDD,and has glasses to help with her reading difficulties.

My next 2 kiddos (14yodd and 12yods) don't have any SN -they are both very gifted in many areas and are a huge blessing and help to me!

My 9 yodd (unofficial diagnosis here) seems to have learning disability/visual perception and possibly ADD tendencies. She is a little ray of sunshine though- rarely has a grumpy face,and loves to be mommy's helper.

My 4.5yo foster dd has severe speech delays,and learning delays, and inutero drug/alcohol exposure. she receives speech services through the public school. She is one of the happiest and easiest to get along with kids I know -and a smile that will melt your heart.

the 2yofoster ds has speech delays and history of inutero drug/alcohol exposure. He is little Mr. Stuntman- his strength and coordination skills continue to amaze me. He will be starting speech services next week.

the 1yo foster ds was born at 28 weeks , wiht history of drug/alcohol exposure. in addition, he has down syndrome, a heart condition, severe reflux, possible hearing impairment (has failed 3 hearing tests now) , and possible cerebral palsy (too soon to confirm the diagnosis.) Right now he's getting ST, PT,and OT every week. We are waiting to see a neuro/developmental specialist and a feeding specialist. He's had a lot of appts. recently,and we are awaiting a sedated hearing test to see if he truly has hearing loss and what type. He is just a joy to have around,and is never cranky - his little face just lights up when you play with him.

[Sarah]

I love this thread Trish!

Well I have 3 beautiful daughters. My first 2 do not have any special needs. My third child, Sophie has autism. She was diagnosed with moderate to severe autism in Dec. of 2006.

She was slightly delayed in walking but other than that, she was a normal baby. She was sweet and smiley and she waved and pointed and could count to 20 and to 10 in spanish. Then she regressed, she stopped doing all of those things and disappeared into her own little world.

She had many classic symptoms. She would line toys all day, she would not respond to her name, no longer gave any eye contact, constant constipation, very fussy all the time. She just seemed very sick.

I could point to many things that caused this, but in the end it doesn't matter. I treat her biomedically and she is making great gains. We started viral therapy a couple of months ago and it has been miraculous for us! :clap: Chelation, (removing heavy metals) has also been helpful, and is ongoing.

I blog about what I do with her here http://wakingsophie.com

[Christi in OH]

What a great thread.

Our daughter Veronica has down syndrome. She had open heart surgery at 3months and 18 months and surgery on both eyes at 5 years old. Other than lots of fillings and crowns she is very healthy. That is a true blessing to me since she won't take any medicine.

Since her eye surgery her world has opened up and she is showing her true colors. She has a pretty large vocabulary of well over 100 words, we stopped counting. She will be starting more regular ST at the start of the school year. We will continue with therapists from the school district coming to our house until she turns 6.

Right now I am working my way through Play to Talk Dr. MacDonalds newest book. We see the biggest results when using his methods, but I have the hardest time changing my interaction to his suggestions. :unsure: But, the new book is much more user friendly than Communication Partners, plus they have a fantastic Yahoo group for a resource too.

Anyway, I would say she is mostly around 2-3yo developmentally. But, has the life experience of a 5 year old so she is hard to peg down to just one thing. She is a funny gal and regularly calls herself "silly". Her motor skills are pretty good and she loves sports.

I have gotten some pretty clear messages that we are to keep her home again this year. I feel the most peace after praying about it and thinking home is where she belongs. Plus, new resources and ideas keep falling in my lap when I think about sending her off.

Oh, and I can't forget the baby. He seems to be just fine so far at the ripe old age of 3 months. He always sounds congested and has some soy sensitivites, but so did Ronnie.

Looking forward to meeting the rest of the group here.

[Robin in KS]

I have three great children. My oldest and youngest don't have any special needs. My middle daughter is the one that learns differently.

When she was in preschool we noticed that she was not learning as fast, or processing things as well as our first daughter had at that age. We didn't think much about it, and didn't get to concerned because we thought she would outgrow it, that she would catch up. But that didn't happen.

When we finally decided to seek help, the first step was to rule out vision and hearing problems. After taking her to the optometrist, we found out that she had severe eye tracking and convergence problems. That led us to check into vision therapy. We got several opinions and decided that was what she needed. I was hoping that would solve all the problems, but it didn't. Vision therapy helped tremendously but she was still struggling to learn.

When she was nine we took her to our pediatrician, to have her evaluated and he diagnosed her with ADD. She has just come to accept that she learns differently, and that's okay.

She is now thirteen and growing up beautifully. She has so many gifts that outshine academics. She is creative, caring, she loves to talk to anyone, has good friends, and has a heart for God.

[Rebecca in Orlando]

Hi. Thanks Trish. It is good to read this thread and see we are "not alone" in our experiences.

I have 3 children,
oldest age 12...perfectly normal, except for asthma and severe nut allergies

middle dd, age 10, has Asperger's syndrome. She has had a reaction to every vaccination she ever received. So, we stopped getting them at age 2. She began to lose some of her speech around age 2. She speaks very well now ( 4 years of speech therapy). She also has vision issues, eye convergence problems, etc. She still receives therapy for that as well as occupational therapy for her many fine and gross motor delays. She has an auditory processing disorder. She is very easily agitated. Sometimes, it is very difficult to deal with her. But, she can be super sweet, loves to have friends (although she certainly stands out as "weird"). She is my biggest challenge and prayer concern.

My little boy is 19 months old and I am so thankful to be able to say, so far, he is NORMAL (whatever that may be!). He has no signs of any delay. We have postponed his shots, but do vaccinate, just at a much slower rate than with my first two. I can honestly say, that even when he cries or gets upset about something, I am so happy that he responds and communicates so easily!

[Greta]

I have 4 wonderful children. My oldest 2 do not have any special needs. My third child, Christopher, has autism. My youngest is not talking as much as he should be but seems normal in every other way.

Christopher was diagnosed with autism shortly after turning 3. During his early years, he wasn't too difficult. He did not interact well with people and had an unusual temper, but he has always been strongly bonded with me. As he got older he began to scream more and more. He still has meltdowns often but they don't last as long anymore. He had strabismus surgery at 5 months of age but he continues to have problems with his right eye.

We have been using RDI since he was diagnosed. He has made so much progress both in comprehending what is said to him and in speech. He is speaking in full sentences and expressing himself more all the time. He has really grown in his ability to relate to others as well. He still has an extreme difficulty with his little brother but I know that will change in time. We are just starting to venture into the area of biomedical treatment. The only strong sensory problem that Christopher has is his oral sensitivity. I have never been successful in getting him to take any kind of medicine. I just got 4 supplements this week and we have been wrestling with that. No success yet, but I am still holding out hope! Maybe feeding therapy will be next.

I had much fear about getting things going with school this year. We are two weeks in now and all is going really well. I am growing more confident about meeting the challenges that Christopher will have with education. This year I am focusing on giving my older 2 more independence in certain subjects and helping Christopher to be healthier both mentally and physically. Alexander is just working on making a mess of everything and being cute. :)

[Lisalyn]

Great thread!

I'm Lisa (Lisalyn on FIAR) and this is our family...

Can I just start with Dh? He is dyslexic/ADD. He is a challenge some days. He is a typical creative mind whose mental file cabinet is upturned and every folder is a jumbled mess. :lol:

1. My oldest dd (17) went to a Christian school for K-5 and 1 semester of first grade.
She was struggling, but her teachers would only say that much and add that she would catch on. No suggestions, no offers of testing, etc. I later found out that the teachers could not suggest a problem because the school would then be required to pay for testing and make special education a reality. :angry:

At the age of 9, her eye doctor asked lots of questions and did a simple dyslexia assessment. This lead to an unofficial diagnosis of dyslexia, disgraphia and dyscalcula.

I also suspect that she would be labeled ADD, but that testing has never been done. At 10 yrs old, her pediatrician gave me a copy of The Strong-Willed Child.

She has done better than I expected. Let's just say, she takes after her father. :D


2. My oldest ds was born with Congenital Heart Disease. Very similar to Hypoplastic Left Heart, but on the right. (HRHS) He doesn't really qualify for this SN list, but I usually can't bear to leave him out. :) He passed at 9 weeks of age.

3. Jack is 13. He was diagnosed with developmental and speech/language delay at the age of 4. Originally his diagnosis was Autism, but was changed after a second eval. I have always believed Autism was more realistic. He went to the PS preschool for a couple of months.

We pulled him out and started working with him at home. He has always been my quirky little guy with the perfect pronunciation. He has absolutely no southern accent. Really strange! He makes us sound like a house full of hicks. :lol: His obsessions are Science Fiction and computer graphics. He knows so much about both subject, it scares me! :cool:

4. Trent is 10. He is the easy to teach, quick to learn, enjoys everything guy. He is an artist and a practical joker. When he was a toddler, he was so shy that he spent two years of AWANA and SS under the table. :lol: It is funny to watch him be the clown now. It's a little funny that he is so "normal" for lack of a better word, and right in the middle. I try to keep a good watch on him due to that middle child syndrome. With all the other stuff going on, it is easy for him to slide by, kwim?

5. Cade is 7. We thought he would forever be the baby. So, when he was born, we called him Baby Cade. We called him that for nearly 5 years. He is immature for his age, and very sensory-affected.

I hope to get some testing done this school year for speech and sensory. He struggles with writing, cutting, and retaining the letter sounds. He can read short, short vowel words, but says he can't. He chews his hands and his shirts.

He loves to be read to and remembers details from all of the FIAR books we've studied. He spouts facts from those studies and things from the Discovery channel all the time. He, ummmm.....talks....a lot. Talk, talk, talk, talk......TALK! It drives everyone :crazy: !!

6. Eli will be 3 in December. He was also born with Congenital Heart Disease. Same diagnosis as his older brother, (HRHS) but a variation of the actual defects. Thankfully, he hasn't had surgery yet, where his older brother had four heart surgeries in his first 6 weeks of life. Proposed surgery date is this December.

He has had sleep apnea/tonsil issues and some minor urological issues, and a foot that turns in quite a bit.

Eli is currently being assessed by various organizations for likely Autism, sensory issues, oral motor or apraxia, speech, etc. We will be starting several different therapies very soon. He is non-verbal and has a few obvious Autism traits like stimming, screaming temper tantrums that could wake the dead, etc. Right now he is running from the kitchen into the living room and back over and over. I can hear his little feet slapping on the tiles. :D

Well, that's our story! I'm so glad this group is here. The FIAR boards have been my lifeline since 1999. I didn't realize so many of us are in the same boat.

:group: to all of you!

[Angela Paige]

Let me first say that this board has always been such a blessing to me! I'm inspired by all I've read in this thread as well ... and it's good to get to know each of you and your children better. Thanks, Trish, for starting this thread!

I have 3 children, who were born in rapid sucession (under 3.5 years) after 3 years of infertility. I'm so incredibly blessed and not a day goes by that I'm not still amazed that I get to be the momma to these three precious kids!

Joel is my oldest and my truly SN child. He was finally diagnosed with Asperger's at age 6. It was a long road in getting us to that dx though. I first noticed the oddities and differences after Nathan was born and began to do things in a more typical fashion. As there are only 19 months between them, Nathan quite often appears to be the older of the two boys.

Anyway, Joel is typical as far as Asperger's goes ... very social inept, a bit physically clumsy, some significant fine motor delays, consumed by his passions (presidents, geography/maps, and TV history), uses a somewhat stilted speech with an extremely large vocabulary, very sensory sensitive, etc. He can be tactless. I can't tell you how many evenings he walks into the kitchen while I'm cooking and annouces "What's the horrid aroma?!" :lol: He can be impatient if the rest of the world doesn't know exactly how many years Arthur has been a part of the PBS children's programming or exactly which years Millard Fillmore served as president.

Yet, despite all this, Joel is very tender-hearted, sweet and kind. Oddly enough, he's the easiest of my 3 children ... easiest to parent (so far), easiest to travel with or take places, etc.

My two younger kids, Nathan and Julia, both have slight special concerns. Nathan has tremendous ear problems. He is 6 and has had 32 ear infections (one which required a 4 day hospitalization :eek: ), 3 sets of ear tubes, and 1 other ear surgery. He has some hearing loss, but I'm not sure how significant. So far, it hasn't affected his speech at all, other than he talks really loudly.

Julia has some minor speech delays that resulted from fluid build-up in her ears during infancy. She was born with a lot of fluid. She never passed a hearing test at all during her first 2 years of life. We had tubes put in her ears and the fluid drained out, and she immediately began attempting to talk. However, her speech has never truly caught up with her.

My kids do go to ps, but we do a lot of work (that I try to make FUN, FUN, FUN) at home. I'm really desiring to someday homeschool again ... praying about that all the time. But for now, we are looking for the blessings that ps provides, while I attempt to give them my best at home and just pray for God's grace and mercy to cover us all and fill in all the holes.

Well, that's us in a nut-shell.
Paige

[ShannonSC]

Hello everyone! I am brand new here and I was so excited to see this section and thread! Both of my children have special needs.
Here is our story in a nutshell, a very big nutshell:

Our precious daughter Amelia (Mimi) was born four weeks early on Christmas Eve 2002 weighing a whopping 3lbs 14 oz and 16.5 inches long. They explained that she had suffered from intrauterine growth restriction. AFTER delivery, I crashed with preeclampsia and HELLP syndrome. She had jaundice so we hung out in the hospital for a few days until we were both healthy enough to go home. She ate well, grew slowly and gained weight but followed her own curve, but well below the first percentile.

In the Fall of 2003 I became pregnant with our sweet boy Crosby. At our 20 week ultrasound they noted that he was not growing properly. Further ultrasounds and testing concluded that he was falling further and further behind in his growth weekly. I was told repeatedly that he had most likely had a chromosomnal abnormality such as Trisomy 18 and that he would probably not make it. I was monitored very closely and at 37 weeks on May 17th 2004 he was born weighing 2lbs 13oz and 16 inches long. He ate fairly well, though he would tire out quickly. He spent only 10 days in the hospital and came home weighing 3lbs 3oz.

During his first year he ate pretty well, but did not gain well and was also growing well below the first percentile. At around his first birthday, we realized that he looked different and began to do some research on what might be going on. At this point he had all but stopped eating, and had weaned himself from BFing. He would only take his formula in a bottle. We discovered the Magic Foundation for children with growth disorders and a form of dwarfism called Russell Silver Syndrome. I joined a listserve of parents dealing with this and learned so much including that there was a specialist for RSS(Dr. H) and she was giving free screenings at the upcoming convention. So I went and took Crosby, along with pictures of Mimi. She diagnosed him as Small for Gestational Age and by looking at pictures she also diagnosed Mimi SGA. SGA is often described as RSS without the face-meaning without dysmorphic features. However, both Mimi and Crosby do have dysmorphic features, though fairly mild, Crosby more than Mimi. After asking a lot of question she diagnosed my me and my mom as SGA too! SGA is a descriptive term they give babies at birth if they fall below a certain height and weight. Usually those children catch up by their 2nd b-day, but if they don't the descriptive SGA becomes a diagnosis as a growth disorder.

Several specialists since then have disagreed with Dr. H's diagnosis for Crosby and do feel he has RSS so we are kind of in limbo on what is truly going on with him. Lucky for us, Dr. H and another ped. endo. are heading up a groundbreaking study to find out what is really going on with all of these kids diagnosed as RSS and SGA as there tends to be a lot of overlapping with the two symdromes, and many different "looks". Hopefully we will have an answer soon!

For now they are being treated appropriately as the treatment for the two disorders are the same. They take nightly growth hormone shots. Interestingly, this is the only form of dwarfism that responds to growth hormone! Their bodies make normal levels of GH, but do not utilize it effectively so they need extra to grow normally. This does not mean that they will be very tall, it simply means that they will reach a more normal height. Right now projected height for the kids is Mimi-4'11", Crosby 5'5". I was against doing GH at first, after all, we love them for who they are, not how tall they are. However, there came a point in early 2007 when they both almost completely stopped growing and gaining weight. At that point they were both candidates for a gastrostomy tube. We were given the option to try GH or have them both get tubes. So we tried GH and within days Mimi's appetite increased and she began eating normally. Crosby, not so much. He did end up with a g-tube and is on 24 hour feeds. We have the Zevex enteralite Infinity pump and he carries it around with his bag of formula in a little backpack made especially for this pump. So he is completely mobile. And don't we know it!:lol: He eats very little by mouth. I am currently working with a natropath to treat his allergies for eosinophillic esophagitis, and trying to concoct a formula for Crosby that he is (1) not allergic to, and (2) is healthy(hopefully orgainc!).
They also suffer from chronic constipation for which they take coconut oil and occasionally mirilax, hypoglycemia, poor absorption, delayed gastric emptying, and illnesses knock them completely off their feet and often land them in the hospital. Crosby has a mild hearing loss which is being monitored. He had a tonsilectomy, partial adenoidectomy, and ear tubes in Oct. of 07.

They have both hypo and hypertonia, but get around just fine. Cognitively, they are within normal limits. However, because the development of their nervous system was compromised, they do display some sensory issues. Clothing is not really a problem, but transitioning is a HUGE deal! They also fight us at almost every turn-meal time, bed time, time to go somewhere, it gets exhausting!!LOL!!:lol: :lol: Recently, it was suggested by Dr. H that Crosby most likely has some kind of metabolic disorder in additon to SGA, so we are awaiting further instructions from her on exactly how this is to be tested for.

Well, that's it! We are always willing to share info. If anyone is curious about something and wants to ask questions feel free. I am all about getting this info out there because so many of these children (especially SGA but RSS also) go undiagnosied and untreated and suffer the consequences.
If you got this far, thanks so much for reading about my kiddos! I have enjoyed reading all of your stories!:)

[Merrilee Morse]

Coming in on this late; I have three SN children. My ds John is mentally challenged and a 33 yo adult now who still lives with us. My ds Patrick is Aspergers, severe ADHD and has bipolar disorder. He is 27 and lives in Oregon. My youngest, Ryan, is mildly autistic, with OCD and sensory integration issues.

[Lisa in Virginia]

Coming into this really late!(I have been on vacation camping).

My first child and only daughter is the one that has learning disabilities. She is also "gifted". She started talking at 9 months and had a huge vocabulary at one year of age. People are surprised when I tell them she is LD. She started to read at 3 and could memorized hundreds of dinosaurs names, diets, what period they lived etc. She currently can read and comprehend at a 8th grade level.

She has dysgraphia, dyspraxia and ADD. It is a struggle to have her write. I knew that she was having problems when I would try to get her to write on her own. I would ask her to spell words like "dog", "are" etc. and she couldn't do it yet she could read large complex words out of science books.

I knew that she must be ADD also because she couldn't follow through on simple directions. I would send her upstairs to get dressed in the morning. I would go up a 1/2 hour later and she would be sitting playing and totally forgot what I told her to do. I have lists posted all around the house reminding her of things. She has told me that it helps her.

Lately, I have been worried that she is OCD. OCD runs in my family and she is exhibiting very strong OCD tendancies. :sad: My heart is breaking in a way because I know what kind of struggle this is going to be for her and it pains me to see her upset. I have spoken to her about seeing a "talk doctor" who can help her with ideas on how not to worry about things. She wants to go so I am now researching this.

Thanks for letting me get this off my chest. Has been heavy on my mind(and heart) lately.

[Leslie Nelsen]

I'm chiming in late too. What a great thread! Thank you all for sharing.

I'm going to go in reverse order with my children. My child with the most significant special needs is my youngest Eliana. If you've been on this board for awhile, you are familiar with some of our story. Eliana has Down syndrome and was born with several heart defects which were repaired a little over a year ago. We've struggled with feeding from early in her life when she went into heart failure. We've progressed from an NG tube (down the nose) to a g-tube (surgically inserted into her stomach) to special bottles to baby food. It's still a lot of work, but she is progressing.

Weekly Eliana receives therapy in feeding/OT, speech and physical. She is doing well in all areas - though is delayed. She is also a joy - a delight - an amazing little girl that has taught me so much. :hcry:

Daniel is 4 and has Sensory Integration Disorder. I knew something was wrong when he was young as his eating was just off. I became pregnant though (and very, very sick), then Eliana was born with lots of medical needs and his just had to wait. We've had him evaluated and he is currently receiving OT/feeding therapy weekly. We may also begin speech therapy (which would hopefully be a short-term issue).

My other children have had some issues - though nothing too significant. My 6yo has some struggles and I'm wondering if there is something more to it than just "being a boy", kwim? I'm not sure where to go with it though and am still trying to figure things out.

We've dealt with vision issues with ALL of our children. *sigh* My 8yo is colorblind and had articulation issues requiring speech therapy. (He is fine now.) That's about it.

I feel like this has gotten long. I'm thankful for others that understand - even if the path is a little different. :group: Hugs to all of you precious moms of special kids. Aren't they amazing gifts?!

[SoniaM]

we have 5 children with Fraigle X syndrome and the 4 boys also have autism ,poor speech.muscle tone issues,1 has epilepsy. How blessed am I hey

[Robyn5]

I feel bad that I havn't jumped in yet. My 9yo son has aspergers. He has been in ps up until last spring. I think it was the year all the other kids really began to realize something was very different about him. He is very socially akward, and was teased and bullied at school. I would peek in at the school and see him reading alone at his desk during circle time, and eating completely isolated at lunch. It broke my heart! He had a tremendously difficult time concentrating with the noise in the classroom, and was feeling like he was stupid. (Actually he is very smart academically). When he began talking about "getting rid of himself," we never sent him back.
Now we are homeschooling. He is so happy to not be at ps that he is being a perfect student. He is willing to do literally anthing I tell him. His concentration and behavior are so fantastic that he has gone off all medication for depression/anxiety/adhd.

This has been one of the scariest leaps I have ever taken! But I have gotten so much inspiration from these boards, and it has come together marvelously! It is the best decision I have ever made! He will actually be able to focus on learning instead of dealing with all the anxiety! I love that I can mold the curriculum to his learning syle/interests, and teach him one on one. Now I'm trying to get up the nerve to homeschool my other 4 children! (My oldest son has ADD).
Anyway, it's a good time to say thank you to all of you that have unknowingly helped me through a traumatic time in my life. I honestly couldn't have done it without you! :)

[LindainOK]

When he began talking about "getting rid of himself," we never sent him back. Now we are homeschooling. He is so happy to not be at ps that he is being a perfect student. He is willing to do literally anthing I tell him. His concentration and behavior are so fantastic that he has gone off all medication for depression/anxiety/adhd.

What a fortunate boy :hcry: and what a happy new beginning!

[laurie in ok]

I am brand new to the Special Need board. You guys have been very sweet in uplifting me the last week. I appreciate you so much. :group:

My dd is 9 and she struggles with writing and math. She was just diagnosed with a Convergence disorder (eyes). She was prescribed glasses and we will go back in two months to see what all that has corrected. I believe she has dysgraphia - but maybe the glasses will solve some of that? Julie sent me her Diane Craft books, and so we have started some of her brain integration therpaies. They also said she had retained at least one of her primitive reflexes so I'm trying to do some research on that. Surprisingly, she reads very well despite all of her other problems, and I know that is a huge blessing.

[Wendy in SW MS]

...but I am "chiming in" way late. ;)

All three of my boys have allergies...mostly respiratory-type (hay fever, pollen, who knows what all). Tim is also allergic to horses (and his sister loves horses! ;) ). Tim also seems to be at least somewhat lactose intolerant (like I am).

I suspect that Tim, Jen, Daniel (maybe Steven, too? don't know for sure yet there) are at least mildly dyslexic. They have not been tested, any of them. Tim and Jen struggle greatly with math, and are not the greatest readers...although Jen says she loves to read. :)

In January, 2004, Jennifer was diagnosed with Type 1 diabetes. That is when it seemed my whole world caved in! That was not a good year (putting it mildly) for us....as those of you know, who have been around these boards that long. Her blood sugars are still a real roller coaster!! You can read some about our diabetes journey here (http://jensdiabetesrollercoaster.blogspot.com/), but it has been awhile since I posted anything! Now with her moving through puberty into young adulthood.........well, the moodiness can get pretty bad at times! :eek: New concerns: she is developing a goiter, so is having mild thyroid problems now, which is common with diabetes. Also, she is 15 now, and still no sign of menstruation. The medical personnel won't get too concerned about that for another year, though. And lately, she has begun to complain of slight hearing loss in one ear.

I have otosclerosis; I began noticing hearing trouble when I was maybe her age, maybe a year or two older. I hear it can be hereditary.

That brings us to Steven! Steven didn't want to wait for his due date; he tried coming at about 6 months. One time they actually gave me medication to stop contractions. Although the doctor didn't put me on bedrest after that, my mom did! ;) Finally at 38 weeks, there was no way that baby was gonna wait any longer to make his appearance!! ;)

At first I didn't seem to notice much amiss with him. I did find it interesting that he spent his first 48 hours or so making constant verbal noise, even in his sleep.

I did notice, at about 4 months or so, when he would try to reach and grasp something, his movements were jerky, and he had a hard time actually reaching what was reaching for.Then at six months, he still wasn't sitting; 9 months, he was still not sitting unassisted...much less crawling!! He finally began crawling at one year. And there were times, when he would be sitting, he would just all of a sudden fall over, like he lost his balance.

I noticed also, when he was under a year, scooting, but not crawling yet, when ever there was loud noise, he would curl up in a ball on the floor with hands over his ears!

I don't remember when we started having someone come into the home, to do therapy with him. He also began having therapy once a month at the clinic (speech and pt). He was only 1 1/2 years old when Jen was diagnosed with diabetes.

We began the testing process. We had his hearing tested; come to find out, he had a hearing loss in one ear! We had the sedated hearing test done, too; it confirmed the hearing loss. About that time, we moved to Florida. So, then we had to kind of start all over.

At this point, all I really know about him: he has a confirmed hearing loss; he has sensory issues; he is developmentally delayed; he is extremely speech delayed/has apraxia. And he is the sweetest child I have ever known!! He is truly my joy, and the light of my life! He seems to exhibit some autistic characteristics, and yet not. And he does seem to have some learning disabilities/challenges.

He has speech therapy twice a week, PT one of those days as well; was in OT as well, and they want to re-eval him for that. He wears a hearing aid now. And right now he is having a real explosion in speech progression.

Well, I suppose I have written way more than I needed to!! And I am thinking, maybe I need to start blogging about Steven....like I started to for Jen's diabetes journey. ;)

I am grateful for this board, and for the prayers and encouragement shared here! :kiss: Thank you all!

[KatieCO]

OK, I hardly ever get the time to be here anymore, but thought I'd post anyway! :) (Sorry for typos - computer is acting weird)

We have 8dc and one on the way. Three of them we consider SN.

Our oldest ds is 14 and has Aspergers and an auditory processing disorder. Being our first, we really didn't notice anything out of the ordinary except that he used to clench his fists & teeth on occasion - without being frustrated or angry. Looking back at home movies, knowing what we know now - we can see signs. But we just didn't get it then.

When he started school, we noticed some DEFINITE quirky behavior. He refused to cross the lines on his matching worksheets. He would freak out that the clocks in the house didn't match exactly. He refused to wear a coat in any weather. We chalked it up to "quirky" and, unfortunately, stubborness. :( Until his sister was dx.

Kyle now is most definitely Aspie, but can be a HUGE help around the house and ADORES babies. His fascinations are US wars and different aspects of time. (Don't ever say "Just a minute" and be more than 60 seconds! :lol:) He couldn't read until he was 11 and after 10 wks of brain games, he gained 3 years in reading! He did have a convergence/tracking problem but we did VT at home for 6 mos when he was 4 and it helped a LOT.

Meg is 12 and was different from the start. Colicky, HATED to be swaddled, would ONLY go to sleep for Daddy (he'd have to come home a couple of times a day from work to put her down for naps). Slept only 30-40min at a time. As a preschooler, she had extreme rages (1-3 hours long, with me restraining her!), would wear all her clothes inside out, was always putting her hands over her ears.

At age 4, we went to counciling and she was dx as ADHD. We felt it was a wrong dx, but didn't know what else was an option. The behavior mod. we tried made everything 10x WORSE. Finally, Aspergers was mentioned by a few professionals. She actually has High Functioning Autism and sensory issues.

We have never had her in any therapy, but she does VERY well with role playing at home. She has done overnight summer camp, she serves the elderly lunch at church once a month, loves going to youth group activities... She still sucks her thumb, has occasional SHORT rages (much more controlable!)and only reads at a STRUGGLING 1st/2nd grade level. This all frustrates her and she is becoming depressed and resentful towards God. We are looking at getting her a reading tutor (AGAIN - this will be the 3rd).

Emily is 10 and gifted. She has some ADD tendencies, but not anything earth-shattering.

Hannah is 8 and is also Aspie. VERY similar to Meg as a young child, but we handled her differently and have seen HUGE gains. Her biggest hurdle is not giving people appropriate space (she is INTENSE). Her greatest gift is her compassion for others.

Jay MAY have Aspie tendencies, DEFINITELY SI, but nothing that interferes with his life.

Sassy is EXTREMELY shy and didn't talk to anyone in our new church nursery for over a year. She would just sit and stare blankly/ Spooked people, really, but that is all.

The twins seem fine, but we watch them closely.

And that's our family! :)

[Lynna]

:hi:

I'm a speech pathologist. I work in Early Intervention.

I thank God for people like you! My oldest ds was born with 3 birth defects. One of them being a sub-mucal cleft palate (not the lip too). Well, he never talked very much and I would always ask the ped, he is almost 2 or 2 1/2 and not talking, why? Well, I was told I was being over critical and would eventually be telling him to shut up!

Finally, I had his hearing checked and the lady doing the test was asking questions and as a nervous first time mommy looking for answers talked way to much, but it paid off! She directed me to TEIN (we lived in TN at the time). A SP came out and after one visit said, he sounds like he has a cleft palate, try the ent and suggest this to him. I did, and he blew me off. SO, the SP told me to call Vanderbilt to get an appointment with another ENT, I did and she came with me. With her help and willingness to come with me, Dylan's 3rd birth defect was finally detected and corrected. :clap: Thank you for the work you do, a SP made a difference in my son's life! :clap:

Just to finish up the story here, he had his palate repaired in Aug, just after he turned 3 and in December my little boy who could not say 5 words (literally) until that time got up in front of the whole church and sang, "Happy Birthday Baby Jesus!" There was not a dry eye in the house because they all knew his trials.

[TrishaG]

Just came across this thread from last summer and thought I'd give it a little bump.

Anyone want to join in or update? It's funny to me that the thing I really down played last year is the very item smacking us upside the head right now: food allergies (ds#2).

And can I just boldly proclaim that our precious middle child is READING FOR PLEASURE?!?!?! She's recently discovered the joys of Narnia, and though she butchers some names along the way, she's loving the journey! :clap:

[Robin in Colorado]

Like me, my mom, my sister, and my nieces, my two oldest have sensory integration dysfunction. I fully expect Princess and Boyo to demonstrate their sensory struggles as well.

Big Girl and Kitty also have hypotonia and motor dyspraxis, though, like their sensory issues, they present in different ways.

Big Girl has tons of environmental allergies and peanut anaphylaxis; Kitty is highly allergic to one thing - cats. Go figure...

With Big Girl, we knew as a baby that she had struggles. Took us years to identify and get help. At age 4 we started her in OT, and she was there 18 mos until the plateaued. At this time we also had her in music therapy, and with Dianne Craft.

When she was 6 and began losing teeth, that really messed with her and we returned to OT for about 6 months. Our previous ot had stopped practicing, so we went to a new practice. DD received OT, music therapy, cranial-sacral therapy, and sound therapy. She made little to no progress, so we stopped.

At age 9 we found a therapist who would come to our home. By this time we realized that Kitty, then 7, was struggling with sensory issues. Her issues were very different from her sisters and she had some good coping mechanisms in place that allowed her to hide. So, the in-home OT actually worked with *all* my children in our home for over a year, 2x per month (all we could afford). This was tremendous for all of them, and we are now on an as-needed basis.

As well, Kitty has some long-term health problems that we are still struggling to pin down, and Princess has some speech and voice issues we are just beginning to work on.

Both Big Girl and Princess take allergy shots, and they seem to have helped tremendously.

Boyo seems to have escaped scott free for the time being. :lol:

[Trish A]

never mind. :)

[EJ IA]

Just came across this thread from last summer and thought I'd give it a little bump.

Anyone want to join in or update? :


Hi there! I'm Erin; I have three kiddos: two boys and a girl. My younger ds (4yo) has sensory processing disorder and is currently in OT, which has been wonderful for him. We're on the waiting list for an eval with a psych. in an attempt to determine "what else" is going on with him--ADHD, OCD, generalized anxiety, etc.--but won't likely be seen until mid-fall sometime. He's who I'm rowing with. My older ds attends our local public school and my dd is just two, and desperately wants to "Do skoo, too!" :)

[AmyinWI]

well I have a brief update on our foster kiddos (hopefully soon to be adopted!)
Our 5yo fd is doing wonderful with her speech therapy,and many people are commenting on how easy it is to understand her now:)

Our 3yo fs ended up not qualifying for speech therapy,and in the past 6 months his language skills have improved dramatically,he continues to amaze us all!
Our 2yo (down syndrome) has been officially "undiagnosed" from Cerebral palsy!:clap: He suprised us all by starting to walk at 22 months,and is starting to sign a few words here and there. His hearing is still questionable- as he failed the last booth test.
His heart defect healed on it's own- so no more cardiologist visits!:clap:

[MelissaSS]

Hi all! This has been such a great thread to read through :clap: I am so thankful for these boards and all the support you have all given us over the past several months.

Makaylah is 5, and has asthma and lots of environmental allergies. She has a great memory, loves everyone, and is sweet as can be - except when her allergies are bothering her, and then we have some anger and attitude issues.

Sophia is the reason I am here! She was always speech delayed, but she had some ear infections as a toddler, and so had Makaylah - once Makaylah got tubes, her speech exploded, and we expected Sophia's to do the same. But it never really did. She was always moving forward, but it seemed that the gap kept getting bigger and bigger between where she was and where she should be. I should have taken her in so much sooner, but everyone (including her ENT) kept assuring me that it was just her personality, being second born, being stubborn, etc, etc. Finally at 3, with almost no intelligible speech, I took her in for an evaluation. She was diagnosed as having a severe speech delay, and we have been in ST twice a week through the PS since October of 2008.

We have some other "issues"..... Sensory seeking behaviors, very wild, socially awkward, but not in a typical fashion - she is social, makes eye contact well, but has no friends, tends to lash out in big group settings.... I suspect somet type of SPD, but I don't really know. She has also started refusing unknown restrooms even if it means she has an accident or holds it for hours (the record is 13!) We are trying to get in for some further testing and evaluations. I don't want a label just for a label, but I just feel like something is not right.

Her speech is somewhat improved. Now at almost 4, I've had a few people from church tell me "She said something to me, it was like three words and I understood it!" That's sort of :clap: and :unsure: all at once, kwim?

Her ST also mentioned at her last appointment of summer school that she feels she has some fine and gross motor issues, which surprised me, since I've always thought her gross motor skills were pretty good.

Isaiah is 11 months and a really sweetie! I'm trying not to panic about the fact that his only word so far is "mama", and that he is not babbling any other consonant sounds consistently yet.

[Sue C]

Thanks for bumping this up Trish. For newbies like me this is great. I have 6 kids and am homeschooling my last 2 so I am giving my readers digest version of life because I could put everyone to sleep. Actually, my friends could tell you that you would find it unbelievable so I won't even try because you don't even know me. :lol:

Anyway..... My kids are affected by Fragile X syndrome. Out of the 6 kids 3 are affected by it.One of my boys is affected so he is developmentally disabled. He is 19 now living in a one on one living situation. His behaviors got too out of control (anger issues etc.) this is working well. My one daughter (7 year old) has Aspergers Syndrome. This will be her first year of homeschooling and I have no doubt it is saving her little self esteem and I am very excited to see how she will blossom this year. The other one affected by the Fragile X Syndrome is my 21 year old daughter. She has a math disability.

Thrown in the middle of all this is smaller frustrating things like severe food allergies and asthma that we struggle with on a daily basis.

But through it all God is good and He has been my Rock. My life verse is Jeremiah 29:11 "For I know the plans I have for you declares the Lord,plans to prosper you and not to harm you, plans to give you hope and a future."

My other 3 children that I haven't mentioned are unaffected. I don't want to leave them out but since this asked about special needs kids I only mentioned my ones affected by the Fragile X. My 3 unaffected are just as special. :) To wrap it up, after my Lord the other thing that gets me through my day is humor......and I have a very warped sense of humor. :D

[Suz MamaFrog]

My ds has some language development delays and some ADHD/OCD to contend with. He isn't waht I would technically consider a SN kid, so I don't think of myself as a SN mama, but I guess in reality, I am......

Anyway, we treat ds's ADHD with vitamin supplements. He takes rather high doses of certain B vitamins every day. They help to regulate his brain chemistry enough that he can function as a happy, if somewhat bouncy, little boy. I don't have to worry about the nasty side effects of Ritalin and some of the other drugs they use to treat ADD/ADHD, and we're all happier for it.

His OCD we treat on an incident by incident basis. If it's a real problem, we try interventions, coping mechanisms and/or acceptable alternatives. If it's no big deal, like leaving his door open "just this much" at night time, I let it go. It's what the dr. calls "picking my battles" I guess. He no longers has to have every car lined up just so on his shelf and he's no longer afraid of riding in the back seat of the van, so I think we're making progress.

His language difficulties manifest themselves in strange ways. He's a slow reader. But he can write as well as any other 8 yo boy - yes it's messy but you CAN read it! ;) He can narrate fairly well, as long as he's been paying attention, but he doesn't like to make up stories or poems. (Just the facts, ma'am! :D ) He loves to sing, but can't always remember the words, even though he's heard the song a billion times. And don't try to make him learn anything through music! He can sing the Months of the Year Song perfectly, in key and everything, but can't remember what comes after October, for example. Same goes for math songs, geography songs, Spanish songs, etc. Something gets lost somewhere along the way. I've been told he may not have any real disabilities - that it may be that he's just a boy, or that it may be his ADHD gets in the way, or it may be just 'cause he is who he is and he can't change it. We work with it as best we can. He prefers oral lessons to having to write anything. He is "behind" in his reading level, but he's making progress. We make up rhymes or recite lyrics to all those fun "learning songs" instead of trying to sing them and he can then remember what they're supposed to be teaching. I guess you could say we cope as best we can and figure a lot out as we go.

The biggest challenge I have with ds is the way others see him. His ADHD makes him seem a bit immature, and his language difficulties can make him seem "slow," and his OCD can make him seem problematic. What I've tried to do is find folks who are willing to listen to me and follow some of our methods for dealing with his difficulties. His dance teacher knows that he will have to enter from stage left or not at all, for example. His SUnday School teacher knows he'll never learn the Books of the Bible from the song they sing, and so she recites it every week. His Wednesday night teachers know that he can't be called on to read just any old thing, or when they do, they make sure he has his "special" Bible that they keep just for him so he doesn't feel left out. I make sure that everyone knows he can't be expected to sit for more than half an hour or so without a wiggle and walk break. Even our pastor has gotten used to seeing him leave the sanctuary right before the sermon, and returning sometime during.

I get really frustrated with people who tell me the only thing that boy needs is a good spanking. I get really frustrated with people who tell me he just needs to grow up a bit and act his age. I get really tired of well-meaning folks who hear him get flustered and struggle to express himself sometimes and automatically assume he's "one of those kids." (I'm fairly certain that there's at least one lovely little old lady at our old church still praying for God to "release" me from my "burden" of a "backward" child. :eyes: )

So, that's me, that's us, that's our life. We're too blessed to stress about it. :cool:

Blessings to you,
Suz

[CINDY LB OH]

WOW! What amazing stories so many of you have!

We have never had a formal diagnosis for my ds, but from all my studying I'm pretty sure he has an auditory processing disorder. This is also compounded with dyslexia and dysgraphia. He didn't talk until he was four and attended speech therapy for 5 years. We are still working on the r sound at home, and only reminders for a few other sounds.

He still does not read or write at 11yo. Thanks to Dianne Craft we are seeing improvements using her Right Brain Phonics program and Brain Integration Therapy. YEA!!!! We are also starting the supplements she recommends-especially the fish oil to build up that brain connection.

He needs everything to be highly visual in order to retain it. We will be using Beyond this year and am very excited for him to have a breakthrough year.

[Christy in NE]

:hi:

We have one dxed SN dd, and one dxed SN ds-which prompted me to visit this forum over the last two days.

Dd. She suffered from a vax reaction(9 vaxes at once!:eek:) at one yr. old-Praise God it was a mild accute reaction.

Her SN resume is...

Age 3yo, dxed with REACTIVE AIRWAY DISEASE...which has led to mild asthma.

Age 5yo, dxed with SPD (Auditory and Tactile) OT helped a lot, and it was soo...validating? to know that she wasn't just a quirky girl.

Age 6yo-dxed with SEASONAL ALLERGIES. (This would be the year round type.)

Age 10yo-dxed with PANIC AND ANXIETY DISORDER.

Dd received 10 months of Cognitive Behavioral Therapy 2x/week-took us three psychologists to get the right fit. She is much better these days, but it will probably always be a struggle for her, since anxiety,panic,depression,ocd,etc..all run in our family. Though it was touch and go for a while, we have managed to keep her off of meds with the CBT.

I hit a major wall dealing with her mental health issues, as I have a hefty health resume myself and was not coping well at all. Our last year of hsing was horrible.:sad: She is now in a PS middle school and has been identified as highly gifted, doing well-so far. In a way, I feel like I let her down-but that really is my own baggage.

Bringing me to ds.

Severe eczema as a baby-still struggles in the winter with this.

Ages 2-7yo dxed with food allergies-most common are eggs and fish.

Age 4yo-dxed with severe far-sightedness and....his right eye crosses over(darn it-I can't recall the name of that dx!:unsure:) he has worn glasses since the dxes. At his last visit with the pediatric eye doc, his vision had gotten worse(huh??) and he is *supposed* to wear an eye patch 3-4 hrs. a day-and I am a horrible mommy, as I often forget-and he sure won't remind me!

Dh and I concluded last night, that ds is showing HUGE signs of both ANXIETY and OCD. I feel like I am about to relive another mental health nightmare.:sad:
Pretty much spent all last week in denial, explaining away his many obsessions, worries, fears, and anxieties. Then this week hit, and by this afternoon, I was in the basement digging around to try to find some of the books we read when dd was first dxed-came up empty on books and full of tears.

Dh just left to tkae the dc to a high school football game-and this is the first time ds agreed willingly to drive anywhere over the past two weeks-without putting up a major fight. He missed his co-op Art class this AM, as he was in absolute fight or flight mode at the thought of the short drive AND the class.

As of the end of this month, we will no longer have ANY mental health coverage-so that royally stinks. Trying not to visit the pits of despair.

Our last name should be "invisibleillness.";)

Hugs and prayers for yourselves, your family and your SNs sweeties.:group: