Parents of Special Needs kids thread

[Linnie The Pooh]

I was inspired by the responses to a thread I posted earlier about my son and thought maybe it'd be nice to have a thread for parents of kids with special needs to vent and get ideas.

I'll go first. I'm the mother of a boy who's 6 1/2 and has had nearly every label known to man. They've ruled out everything, but can't pin anything down. He definitely has auditory processing difficulties, both expressive and receptive language delays and sensory issues along with fine motor difficulties. We've dumped tons of money into doctors trying to get an accurate diagnosis and the closest we've come so far is a specialist we saw in a neighboring state who diagnosed him with extremely large tonsils and adenoids.

They were so detrimental. I'm a sped teacher and I never saw it with him. I knew he had trouble, but never thought of tonsils. He could never close his mouth to breathe, couldn't speak clearly (due to the tonsils holding his tongue down) and couldn't hear correctly due to the adenoids being so huge. Also, the muscles and nerves around his mouth made it impossible for him to move his lips correctly because of his being a mouth breather for so long. His muscles & nerves were severely weakened. He couldn't pucker his lips or control his tongue except to stick it out.

He was 4 1/2 by the time he was diagnosed with this and I was told he'd be mixing in with other kids by the time he was 10. We were told to do private speech and occupational therapy (the tonsils & adenoids were so huge they caused a lack of oxygen to his fingers and his fingers became clubbed and lost feeling so fine motor tasks are difficult for him). We also did Fast ForWord and that was the most worthwhile thing we did. We saw the biggest gain with that program, but I worked him hard. I took him out of the private therapy last year because he wasn't making progress with it.

We have 3 1/2 years to go to get the 10 year mark when he'll be mixing in with other kids, but I have to say, I'm losing hope day by day. I don't think he'll make it. He is extremely hyper and has some strange behaviors that I know impede his ability to be like other kids. I'm wondering if the oxygen deprivation for 4 1/2 years affected his brain. His doctor said that if it did, it'll repair itself, but I don't know.

Anyone else feel like sharing or venting? They have support groups, but like my son, I don't fit into any of them. I've never seen a child like mine before. He's a mystery.

 

[kdibattista]

I'm so sorry

I'm not the parent of a special needs but my sister has Down syndrome. It's so hard when people don't understand. I know I worry every day about her getting made fun of, stared at, etc. She's 22 now and knows she different but doesn't really understand. She just wonders why other people are sometimes mean to her

 

[mushumadness]

my niece has downs syndrome, shes 12 now, but still unable to say anything but basic words,

the elderly people in this country are horrible to her when I take her out, I could vent all day about that

 

[Marseeya]

Both of my kids have problems, but they're definitely mild compared to some... especially DD. I'll start with her since she's easy. I'll try not to make it a novel with my DS.

DD (10) is the sweetest little thing in the world. She didn't even cry as an infant, and was just a little doll baby. She just basically had some speech/language delays, which as a sped teacher, you know would affect her socially. She did go to early intervention for it. Then in school, she has always struggled. She has a very difficult time with reading and spelling. We had her tested in the 3rd grade, but she was found to have an IQ of 85 and not enough of a discrepancy for an LD in anything. BUMMER. So, poor thing just has to struggle along, feeling dumb all the time. She's still got an IEP for speech, so they've been fairly good about including accomodations in her IEP that will help her with her reading. Oh, and she's also shown signs of innattentive type of ADHD. I wonder who she gets that from.

DS (15). Ay yi yi. He started out with speech/language delay, and we put him into early intervention. Around the age of 3, he went from being a normal little boy to a destructive little demon. He got angry, destructive, and frustrated. By the time he was 5, we took him to a psychologist, who DX'd him with ADHD and ODD. Over the years, he's been to numerous shrinks and has been on several different meds (Zoloft, Depakote, Ritalin, Adderall, Concerta, Clonidine, Strattera, and maybe something else I'm missing.) The only med that ever worked for him was Adderall, but not for long. Even when he was on a fairly high dose of Depakote, nothing seems to affect him. When he was 13, he was diagnosed with bipolar and depression, on top of ADHD and ODD. Also, in the 6th grade, he was diagnosed with an LD in written expression (finally), but by the 8th grade, they tested him out of the sped program -- all without testing his writing, if you can explain that to me.

The teen years are a nightmare with him. At his best, he's sullen. At his worst, he's a raging ball of angry hormones. Consequences mean nothing to him, no matter how consistent or strict we are.

Being a parent of a kid with behavioral disorders is tough. Teachers and administrators treat us like dirt when it comes to him -- yet those same teachers treat us wonderfully when it comes to our sweet, compliant DD. There are very few places I can go and be honest about his behavior, because people act like it's my fault and that I'm doing something wrong. I belonged to a forum that I loved, but whenever I tried venting or talking about my problems with DS, they would inevitably blame me or my DH for his issues. The people on the Dis have been so incredibly wonderful and supportive because so many of them have been there with their own kids, and it chokes me up thinking about it. I can't even tell you how much that means to me. A mother of a "different" child feels guilty and responsible enough without actually having people throw those accusations at her. There are days when I just feel worthless as a parent, but have nowhere to turn.

So, let me just take this opportunity to THANK everyone who has listened to me whine and rant and rave about my son, and has not passed judgment. I love you for that.

 

[Wishing on a star]

Being a parent of a kid with behavioral disorders is tough. Teachers and administrators treat us like dirt. There are very few places I can go and be honest about his behavior, because people act like it's my fault and that I'm doing something wrong. I belonged to a forum that I loved, but whenever I tried venting or talking about my problems with DS, they would inevitably blame me or my DH for his issues. The people on the Dis have been so incredibly wonderful and supportive because so many of them have been there with their own kids, and it chokes me up thinking about it. I can't even tell you how much that means to me. A mother of a "different" child feels guilty and responsible enough without actually having people throw those accusations at her.

So, let me just take this opportunity to THANK everyone who has listened to me whine and rant and rave about my son, and has not passed judgment. I love you for that.

First... I understand exactly!!!

Second... Yes, it is very very hard for parents to not 'internalize' their childs issues.

Third... back to you!

 

[jackskellingtonsgirl]

Hugs to all of you!

As DS9 gets older it gets harder and harder to be a parent. I told DH the other day "It's not supposed to be THIS hard!" As a nanny I am very experienced with younger kids, but kids older than 4 just boggle my mind!

DS is a good guy. Very sweet, imaginative, funny, polite. But his teachers say he can't concentrate on anything and he can't seem to retain math concepts. At home it takes him FOREVER (3-5 hours) to finish homework that the teachers say should only take 90 minutes. He can pick at a plate of food for nearly an hour. He is very small for his age - easily the smallest boy in 4th grade. If I ask him to do something he has a very LONG reason for why he can't possibly do that right now. He was tested for Gifted but apparently didn't score high enough to enter the program. The guidance counselor said they have made the test MUCH harder because they are cutting the budget and want fewer kids admitted. Don't know if that's true or not. We had him tested for ADD last week and I will get those results on Wednesday. We also completed a profile to rule out Asperger's which I was already sure was NOT the problem.

Last week we had some issues with DS being bullied by the same kid who was bothering him back in the Fall. During that time he took a pencil and poked HUNDREDS of holes in my dining room table. DH said there are over 400 holes. He has NEVER been destructive before. He takes very good care of his things - I don't think he has ever broken a single toy, even accidentally. He can't come up with a reason for why he did it, and I am hesitant to have the table fixed because I don't know if he will do it again!

I think he probably has inattentive ADD, and maybe some anxiety. He tends to blow things out of proportion and he needs help sorting out which issues really are big enough to freak out about. I just hope we are able to come up with some concrete findings so we can work on ways to help him.

 

[Linnie The Pooh]

DH & I worry all the time about DS getting made fun or being bullied at school. He wouldn't know what to do-I'm not even sure he would understand it, but it still scares us. We don't know how much he does understand.

The funny thing is that DD4, acts as if there isn't anything the matter with DS. She expects him to talk to her and play with her and he does sometimes, not all the time. It's interesting for me to watch them interact-she's one of the only people who doesn't treat him as if he's different and I wonder if there'll ever come a day when she sees that he isn't like other kids.

 

[jackskellingtonsgirl]

A family I used to nanny had a little boy with Down's. The older brother (2 years older) never mentioned it the whole time I was working with them. I left when the older one was 7.

The younger one attended a special preschool for kids with developmental delays, and the majority of the kids had Down's. One of his teachers was doing a paper for her Master's thesis about kids with disabled siblings and how the "normal" ones perceived them. She interviewed a lot of the siblings from the school, but I never saw her finished paper. I am pretty sure most of the siblings, at least in the beginning, don't realize that their sibling is different. They either figure it out later or have it pointed out to them by other kids, a la "Your brother is a retard." It doesn't occur to them that not everybody's brother has a therapist of one sort or another every single day of the week. It doesn't occur to them that when they were 5 they could speak and were toilet trained. Their logic just doesn't go that way.

Linnie, I hope your DS doesn't have to go through being bullied! I never would have thought it would start in 4th grade, and I can't pinpoint why the bully chose DS for his target. Unless he knows DS will freak out and that's the reaction he is looking for. It must be horribly frustrating to have gone to so many doctors and still not have a clear answer about your DS. I hope he is able to gain back the ground he lost with his tonsils and adenoids, and that any damage is reversible as the doctor indicated!

 

[barkley]

ds (adhd) will be 9 next week, and i have to say one of our most frustrating experiences was dealing with the preschool years. i understand there is high turn over among preschool teachers (in my opion one of the most grossly unappreciated and underpaid jobs around) but it's hard enough for a preschooler without any special needs to deal with change let alone a special needs kid. we endured a nightmare when ds when age 3-5, constantly getting calls from preschool complaining that he would'nt behave. we understood the issues they had with his behaviour but we could'nt help but feel that never having the same teacher for more than 3 months in a row did'nt help matters. every new teacher brought the need for him to adapt to their personal teaching style, their individual personality, and most importantly his need to establish trust in them (he felt alot of abandoment when someone he saw every day just up and left).

it's also realy hard when as a parent you are trying to work with the doctors to get a diagnosis and the schools are on your back to get answers "yesterday". a parent can advocate for their child but it does take time to get medical referrals, testing and conclusions from the tests. i realy wish in an individual school does not have the patience to deal with the process they would say so at the onset-then a parent can find a school that does (we went through 3 preschools in less than 1 1/2 years before we found one that said "o.k.-if the doctors say it will take x time to do the testing it will REALY take x time so let's not expect any information before that later date).

we are REALY lucky-we've been able to avoid the public school nightmare so many parents have to deal with. we found a small private school that while they don't specialize in special need kids, because of their size and kid/ teacher ratio are able to allow students much more one on one attention and the ability to progress at their own pace (our school has less than 30 kids grade k-8th with 3 teachers, so my son has maybe 4 kids in his grade-that allows for alot of one on one). and i've found that if the school setting is less stressful his behaviour and performance improve significantly (just as his behaviour is variable depending on stress issues at home).

with adhd and sensory issue kids the enviornment they are in makes SUCH a huge difference. i've known several parents whose kids did great in their public schools classrooms that addressed this, but once they went into a playground or assembly or had to transition between classrooms that did'nt take this into consideration they experienced complete meltdowns (and it took several hours into several days depending on the situation to get them back on track and focused). i just wish the public schools could afford to address the entire issue more wholisticly (look at the enviornment the kids will be in during the entire school day vs. just during their classroom hours).

i know the whole school voucher issue is a hotly debated topic, but it seems that in the case of special needs/disabled kids rather than spending years trying to adapt a public school program to fit their needs it would seem so much more compassionate and productive to allow them to utilize an available private school that is already set up to do so. the current laws that require years of failure to provide and then (usualy) major litigation to move them into a private setting just appears to me to be so emotionaly and financialy wasteful. save some time, save some resources and just say "here's the best program for the kid, take the funds we would have poured into 'trying our best' and go get the best available".

 

[summerrluvv]

My son just just turned 7 and has some issues. He is delayed in his expressive and receptive language, he is sooooo distractable and started taking medication for ADD a few months ago which is helping to keep him focused. He has fine/gross motor issues and started EI when he was around 2 years old. He receives OT/PT and Speech at school.

He came home with Citizen of the Month from school last month for being "Caring" which was such a proud mommy moment. He's currently in a self contained classroom with children that have similar issues as him and I'm hoping for inclusion next year but I just don't think that will happen since he still requires a lot of one on one time to stay on task. He has an average IQ (99) and is has a long term memory like an elephant, but his short term is lacking when it comes to working on his reading and math. I get frustrated at times when I'm working with him on reading, etc. and I feel guilty because I just expect him to "get it" sometimes when he doesn't. I never had a problem in school and was an A/B student so it's hard sometimes but I'm trying to learn to be more patient.

Overall he's a pretty happy kid though and I wouldn't trade him for the world

 

[Karel]

i know the whole school voucher issue is a hotly debated topic, but it seems that in the case of special needs/disabled kids rather than spending years trying to adapt a public school program to fit their needs it would seem so much more compassionate and productive to allow them to utilize an available private school that is already set up to do so. the current laws that require years of failure to provide and then (usualy) major litigation to move them into a private setting just appears to me to be so emotionaly and financialy wasteful. save some time, save some resources and just say "here's the best program for the kid, take the funds we would have poured into 'trying our best' and go get the best available".

You do realize that people have spent years and years trying to get their kids out of special private schools into the mainstream public school setting?
You just sent special eduction back to the '50's.

 

[PrincessPatty]

You do realize that people have spent years and years trying to get their kids out of special private schools into the mainstream public school setting?
You just sent special eduction back to the '50's.

I have a question about this, Im not trying to debate, I just dont know much about school and their systems. I am interning at a school for Autistic children (I am a psychology major) This school only has Autistic children and it seems to work very well for them. I cant imagine these children being mainsteamed, they need one on one attention and as much as I can remember, teachers in public schools couldnt even give us "normal" kids one on one attention. And other factors too, one of our new students was in a public school and he had some behaviors during lunch one day and they put him into a restraint hold, we NEVER use restraints, and I think this is just a general thought in public schools, many of the teachers arent specialized in special ed. Just a question on why mainstreaming would be so much better for these kids who need special attention and would never get what they needed in public school?

 

[barkley]

You do realize that people have spent years and years trying to get their kids out of special private schools into the mainstream public school setting?
You just sent special eduction back to the '50's.

i'm saying it should be an option AVAILABLE to parents. in california there have been dozens of major law suits wherein a parent has shown for YEARS that a local private school (not talking a horrible "hide them away" facilitiy circa the 50's-a little inexpensive school that simply has smaller classrooms and better teacher-child ratio) offered exactly what their child's iep has called for. the public school has done their best but not been able to provide what the child needed. the way the system is set up the school has to fail for years and then it has to be proven that they will not be able to provide given even several more years (and "projected" enhancements to programs, greater funding).

the parents enter into a massive lawsuit with the district to send them to the school that provides what the student needs. years and massive amounts of money are lost to litigation (not counting the lost time for the student). if the parent had the choice from day one to secure their child's iep needs at a private school (with a voucher for the amount the public school would have paid for JUST the iep issues) the child could have had their needs met from day one.

being in a large public school may work for some special need kids-it does'nt work for all of them. of course, i would like to see changes to make the public schools more user friendly to these kids, but i don't like the idea of any kid suffering for years while the schools manage to accomplish this.

i kind of view schools like i view doctors. if my child were ill i would be going to the doctor that had a proven tract record to treat the illness not the doctor who was still learning how. i'm not sending my child to a school that is still learning how to address their learning needs, i'm sending them to the one that has proven they can.

 

[Mishetta]

I have 2 boys. My 10 y/o is ADHD, has some sensory issues & as a psychologist said "displays ODD tendencies". My 4 y/o is also ADHD & has expressive & receptive language delays. His neurologist has dx'd him as Asperger. He was also in an early intervetion program & has been receiving SLP & OT since he was 18 months old. I can say that it's only been the past few months that I really notice progress. It's slow but at least it's going in the right direction. He gets SLP & OT thru school (he is in special program for children with delays) & we just qualified thru our county to get more services for him. Soon we should be started SLP & OT at home too. During the summer months, I have enrolled him in special programs which encompass SLP, OT, PT. So it's non-stop here.

I have to admit, since he started taking the ADD meds (Ritalin), he has greatly improved in speech. He seems to "get" what's going on in school now, whereas before he was just being so destruction in school. He'd lay on the floor & just roll back & forth & knock over whatever was in his way & he'd scream too. Now he's able to function like the rest of his classmates & pay attention to what they're doing.

Now, my oldest is another story! He's usually angry & doesn't give a rip about consequences. He does great in school with minimal studying. I see some speech problems with him (in forming sentences). He just kind of starts off in the middle of a paragraph when he's talking. So, I got him in the speech program at school but it's only once per month. (He goes to a private school.)

Just like jackskellingtonsgirl ~ my DS poked a zillion holes in his shirt with his pencil. When I asked him why he did it, he said "I don't know..." That seems to be the answer for all his problems lately!

I have been to hell & back with these kids. I've told my DH that I never signed up for this program. I know most of you will think I'm so awful for saying that but until you've walked a mile in my shoes & see what my day is like with these kids (especially my oldest)...... Life is just so hard with him. I'm always aggravated & upset because nothing is easy with him. My youngest who has more mental problems is easier! Anyway, yes it's wonderful to have a place to vent. I sometimes feel so alone in the world.

I'll be subscribing to this thread & thank you for starting it! God Bless us all & especially our children because Lord only knows what their future will bring.

BTW, I just wanted to add that (supposedely) I live in the best county in MI to get the services I need for my DS(4). I've been told by my kids pediatrician & neurologists that people move from out of state to come to this county to receive all the services they need for their children. The county is providing all our private SLP & OT free of charge to us (besides the free special pre-school program which provides SLP & OT also). The therapists come to my house too! He also qualifies for free psych evals as well as behavorial assessments. They will even provide for caregivers if I need a break (but I don't do babysitters since I have my own issues about trusting strangers with my children.) It's a great program & there are many other services available but I'm just using the basics for my little guy. My oldest seemed to have slipped thru the cracks since there was never a proper diagnosis for him.

 

[nwdisgal]

I have a question about this, Im not trying to debate, I just dont know much about school and their systems. I am interning at a school for Autistic children (I am a psychology major) This school only has Autistic children and it seems to work very well for them. I cant imagine these children being mainsteamed, they need one on one attention and as much as I can remember, teachers in public schools couldnt even give us "normal" kids one on one attention. And other factors too, one of our new students was in a public school and he had some behaviors during lunch one day and they put him into a restraint hold, we NEVER use restraints, and I think this is just a general thought in public schools, many of the teachers arent specialized in special ed. Just a question on why mainstreaming would be so much better for these kids who need special attention and would never get what they needed in public school?

First of all, welcome to the world of Special Ed. You are going to see as you go through your work experiences how the opinions on how to treat Autism and what works best is as varied and diverse as those affected by it. Some of my best advocacy came from professionals such as yourself who had some time in this field and could advise me on the various drawbacks and strengths of different programs. As a parent of a child who has Autism, I can agree with you that the one on one attention and special curriculum is beneficial to a point. My son has had it both ways - mainstreaming and a pull-out program. Both have been beneficial to him in different areas. The pull out helped him to make strides in academics. The mainstreaming has helped his communication and social skills. One of the most critical areas for a child with Autism is learning Social Skills. Studies have found that some of the most beneficial aspects of treatment is through social interaction where Autistic kids learn social skills by observing behavior modeled by their typically developing peers - Circle of Friends, Lunch Buddies and those types of programs. Unfortunately in a segregated, private school setting, the autistic child can not gain that type of social interaction. My son has made significant progress because of compassionate peers at school and in Boy Scouts who help mentor him and model behavior. The peer mentors gain excellent leadership skills that will serve them throughout their life.

 

[HayGan]

My DS#1 (5) is dx as PDD-NOS. For those of you who don't know, PDD-NOS is a classification in the autism spectrum. Essentially I think of it as the generic autism term because the child can't be classified as autistic or aspergers or fragile x, etc.. His main challenges are receptive/expressive language and some sensory issues (constantly chews things primarily!) We first noticed a change in my son shortly before his second birthday (shortly after his 18 month vaccinations.) I don't think that the vaccination was the cause of his challenges but acted as a trigger or switch in his brain that turned off a some key developmental areas. It was a difficult time because we had just had our second DS and probably should have caught the regression a little bit earlier. We had to push our ped to get a speech eval which we finally got when DS was 28 months old. The speech therapist was the first to mention autism (which I had thought about) and my heart was broken. When we called our ped to get a referal for a child psychologist his only response to us was that he had his suspicions WTH?!?!? Needless to say he was not our ped after that! Anyway we were finally able to get DS into EI (speech and OT which came to our home) through our county. He finally received an official diagnosis of PDD-NOS when he was a little over 3 years old. Since then he has been receiving wraparound services through a wonderful local agency. This is all paid for by his medical assistance (which he qualifies for because of his dx.) He now attends a social program for high fuctioning kids through the same agency which has done wonders for him. He will be entering a regular kindergarten this fall with a a TSS (theraputic support staff) person in the classroom with him. I am so excited and scared for him all at the same time. While I wish he didn't have the challenges that he does, I him to pieces and he is just the greatest kid! Everybody just falls in love with them when the meet him and so many of his therapists/teachers talk about what a great kid he is!

My DS#2 (4) has a speech delay and attends a EI preschool (also paid for by the county) We realy believe that his speech issues are a result of his brother's delays. He has come a long way and now only has some articulation issues which will be corrected in time.

My boys are each others best friends. They help each other out in so many ways. I am so lucky to have the 2 most special little boys in the entire world (at the least that is my unbiased opinion of them )

 

[Andrea]

I just wanted to invite anyone who lives out in the georgia area for a motocross race that will be going on febuary 26th its a sunday. All the profits will go out for children with AT
to find out more check out www.ride4at.com

 

[tw1nsmom]

Hi all! I've talked about my DS's challenges in a lot of other posts. DS (5 1/2) has been receiving services since he was three. He's now receiving services in a public school kindergarten.

This past fall we got an official diagnosis of Nonverbal Learning Disability. He has a wide discrepency in his verbal/performance IQ (approximately 102verbal and 75nonverbal). While his receptive language is very high, he has trouble with his speed of language retrieval. His main trouble lies with nonverbal processing. He has difficulty interpreting facial expressions, tone of voice, slang/idioms, double meanings, sarcasm... He also has fine and gross motor delay which has effected his motor articulation skills. He's made great strides with his articulation. They feel he's tested out of articulation services. I'm not so sure.

He's a fantastic little guy who is incredibly loving, trusting and naive. He always tries his hardest and will literally do anything someone tells him to do. This is a major area of concern. I have to watch him like a hawk. If an adult, or other child told him to go with them, he would. For this reason, he has a shared aide this year, and will have an aide next year who will accompany him during all specials and nonstructured activities like recess and lunch. The aide will also preteach concepts and preset him for transitions. He will also receive push-in resource teacher services (he goes to the resource room this year, but because kindergarten is half day here, he does the extended day program after his regular kindergarten day). In addition, he currently receives and will receive next year OT, PT, Speech, and counseling/social skills training services.

He has a fantastic, creative, and dynamic twin sister. They're best friends (when they aren't bickering like an old married couple). She receives OT and PT for a mild fine and gross motor skill delay. She's made fantastic progress, and will be declsasified and serviced under a 504 for one more year of OT/PT consultant services only.

We had an extremely bad experience in a supposedly integrated special needs preschool. In NY preschool special needs kids are sent to privately run preschools that receive funding from the state. His IEP has always indicated that he be in an integrated class. To make a long story relatively short, Ds and all other special needs kids came in the building from seperate entrances, had seperate cubby areas, and were in self-contained classrooms, where they might get a "typical" child visitor for 1/2 hour each day. I complained and was promised that he would be integrated the following year. Not knowing his rights, I agreed thinking that it showed progress. The following year he was supposed to be placed in DD's class (we paid for her to attend as a "typical" student) along with 10 other special needs kids. In the end, they had their own classroom, and would spend about 1 1/2 hours out of their 2 1/2 hour day in the regular preschool. However, they were made to leave the room whenever a typical child had a brithday party, they refused to put their names on the class list, so they weren't invited to any outside social activities, and the time they were in the classroom, they sat at seperate tables while the typical students were rotated in and out of the room in order to provide token integration for the remaining self-contained classroom. When I brought the discrepencies to the attention of the owner, all kinds of nastiness spilled forth. I was told "S. needs to learn to identify with his own kind," "I can't change the typical childrens program, their parents are actually paying for their childrens education, you're getting the state to pay for yours,""integration is highly overrated,""I only have to give the appearance of trying to integrate and they won't do anything to me," and, "If you don't like my school, get out!"

Well, we pulled both children from the school. Our lawyer said that he knew he could win a lawsuit against him, but that S. would be in first grade by then and he didn't feel it was in DS's best interest to remain in the school. Both children received itinerant services in the home for the 9 months until kindergarten started. I didn't quite leave it at that. I wrote a four page letter of complaint to the deputy commisioner of special education in NYS. After an investigation, the preschool was cited for failing to follow my son's IEP (the IEP stated an integrated environment), and for fostering a discriminatory atmosphere. They were forced to change their integration program and are currently under continued review.

To say that I was hurt is an understatement. Then I became angry. I was/am determined that my son's rights would never be violated again if I had anything to say about it. I already had a BA in Psychology and MS in Elementary Education. I've now undergone (and continue to undergo) training to become a special education advocate. I'm also reading every book and attending as many seminars as possible on Nonverbal Learning Disability and Special Education Law. I want to do everything I can to help others, so that they don't have to go through what I've experienced.

 

[VSL]

Hugs to all here. I can't possibly imagine how tough it must be!

I really cannot understand some people's responses to children/people with special needs. Whenever I see special needs children/adults, I just [try] to respond as I normally would to anyone - I smile, and that's it. When I was in WDW in Dec 2005, there was a women with a guy who was in a wheelchair and had a teddy and stuff waiting for the wildlife express in AK - at first I was shocked (in that, it's not something that I've ever seen before), but at the same time I just thought it was amazing that he could be there, and the woman (whoever she was) was amazing for doing it.

How someone could be cruel towards a downs syndrome person is just beyond me. I mean, with some special needs, you can't tell that there is a problem (ie, the behaviour of some autistic children could just be seen as being stubborn to a stranger), but with downs syndrome it is there for you to see. I've only ever met one little girl with downs, and she was an absolute treasure.

My BF volunteers with an autistic teenager as well - he's doing his Psychology degree and plans to do his PhD next year - and we met a few weeks ago. To be honest, I don't think his voluntee(?) liked me at all (just completely blocked me), but that doesn't particularly bother me as he (apparently) really likes Jay and that's what's important. In fact, I'm pretty sure that they have every intention of staying in contact even after Jay finishes Uni and stuff.

Either way, just wanted to send some support to all you out there - cannot believe what some of you have had to put up with.

 

[JulieWent]

This past fall we got an official diagnosis of Nonverbal Learning Disability. He has a wide discrepency in his verbal/performance IQ (approximately 102verbal and 75nonverbal). While his receptive language is very high, he has trouble with his speed of language retrieval. His main trouble lies with nonverbal processing. He has difficulty interpreting facial expressions, tone of voice, slang/idioms, double meanings, sarcasm... He also has fine and gross motor delay which has effected his motor articulation skills. He's made great strides with his articulation. They feel he's tested out of articulation services. I'm not so sure.

Hey! Tw1nsmom! It's so rare to meet someone else who actually knows what NLD is! My son (age 10 now) has NLD, too. (Do you ever go over to www.nldontheweb.org? I love that forum. I get my best info there.) Anyway, hang tight on the speech path. DS has been in speech since he was in 1st grade. He doesn't have any artic. problems, but the MAIN problem most NLD'ers have is in prosody and pragmatics. DS's speech path is his pragmatics goddess. She has taught him how to navigate social situations and maintain conversations. That's the area most in need for him. They work on virtually all the things you listed (facial expressions, tone of voice, slang / idioms, sarcasm), and he's made such progress. He's almost ready (dare I say it???) for MIDDLE SCHOOL next year.

I kind of hope the OP would dip in here, too, cause some of the things she said about her child made me think, "I wonder if anyone has ever bothered to check out NLD as a diagnosis?" So many of us who deal with it went through so many other possibilities first before finally a person who knew NLD dx'd and said, "You know, I think your child fits here." It's so frustrating.

Anyway. Hi! It's nice to know you're out there. Stop by the NLD board sometime.

Julie