OT: Can I Vent and Ramble?

[Nazran]

Can I vent/ramble? I am going to just ramble because being a guy... my friends don't want to hear it... and my wife and I have talked it to death...

My DS is 5 years old and we received many reports about his behavior and lact of attention span and hyperactivity in private preschool. The preschool recommended having him tested for ADD, ADHD. We did and were told it was to early to test him (3 years at the time) by our pediatrician. He did however recommend PT and OT for him as he was delayed quite a bit. 4 months in to PTOT he was deemed age appropriate.

Last year it became apparent that he was struggling with 3 year old concepts at age 4. Unable to learn the alphabet, numbers, etc. He is a very intelligent child and has an expansive vocabulary, can work a computer despite not being able to read, problem solver, etc etc.

We had the school district we would be attending come in and observe him for a 'comprehensive' autism evaulation at his private preschool. 10 min later he was given a clean bill of health. No autism! Whew! How happy we were in our naive little world.

Next up... have him checked out for dyslexia was the next suggestion. Evaluation showed probable phonological awarness disorder and maybe dysgraphia.

Move to this summer. Five years old. We decide to have neuro-pscych test at pediatricians suggestion. Very intense 6 hour session for him and tons of paper work and evaluations for us to fill out.

Diagnosis...

wait for it...
wait for it...

PDD-NOS which is on the Autism Spectrum! (thanks school district) Sensory Integration Disorder (Proprioceptive sense affected) and possible auditory processing issues. (testing for that next week)

For the PDD-NOS his most delayed part is receptive communication and sequencing. he is understanding most communication at a 3 year old level. Makes sense to me now. "Son take your shoes off and put them away" would often net me shoes off laying in the floor. Many teachers also told us 'he just doesn't want to listen to direction' and 'stubborn' was used.

His Sensory issue is his proprioceptive sense. (hard to explain, but your bodies sense of where it is) This causes all kinds of inappropriate personal space violations for other people as he sensory seeks. He hugs very hard, likes other people to sit on him, etc.

Things that we are doing for him

Casein free diet. We tried gluten free and that did not seem to have any effect however after we took him off Milk products of all kind he many breakthroughs. Overall calmness, opening up to his peers, better memory and sequencing. We are currently not giving him soy because his stomach just can not handle large amounts of it. He will vomit or have intestinal issues if too much soy is introduced. A Godsend has been Almond Milk. While expensive it tastes good (like a vanilla flavored milk) and he can eat cereal, etc.

We just started him on PT/OT/ST at a local therapy per the neuro-pysch eval. We are greatful that we have insurance that pays for 20 PT and OT visits a year (minus $30 copay) and unlimited speech therapy.

He is in a swimming program for children with disabilities. He was terrified of the water at the beginning but now is a fish. Swimming is great for some sensory issues!

We are debating putting him int o social group therapy because insurance will not cover it.

We are fighting two school districts tooth and nail to get special services or speech therapy for him. I apologize for my language but for the most part they SUCK. I live in one of the most desirable (supposedly) school districts in Texas, (Grapevine-Colleyville ISD) and they give us ZERO support. They suggested we put him in kindergarten at 5 and let him fail so he could be held back at which point he could receive services. (that sounds logical) Now since I live in a city served by two different school districts I pay property taxes for both districts. The other schoold district Hurst Euless Bedford ISD has been a little better but they are saying the other school district needs to provide services for our child.

I just want my son to have every opportunity to learn and be as normal in every aspect he can in his child, young, and adult life...

Someone encourage me or tell me it gets easier?

 

[Miss LD]

Not sure if you read my post from yesterday.
But, we're just at the beginning of this process.
Hang in there. I don't have any suggestions since the testing, etc is all new to me. But, just wanted to say it will be worth it when you get this stuff figured out

 

[disneyplanningdad]

My prayers are with you. We have good friends with a similar story with Aspergers. They're son 12. My DW and I are feeling guilty because his behavior had been getting worse over the past couple of years. My boys are 11 and 13 and until then the three had grown up together. He had always been a tough nut bu recently was becoming more and more abusive. Now we feel like we have been neglectful friends. Like you we can't help but think "What were his teachers thinking all these years.

Hang in there. There are lots of treatments. Also, Don't be so sure your friends don't want to hear it. Give them a try. They are not going to stop being your friends because you care about your son. There is nothing more manly than protecting your family.

oh and BTW, since this is DIS, once you've sorted some things out, consider a trip to he World. I've heard great stories about WDW from families in similar situations to yours.

 

[WindyCityDisney]

We've been through much of the same experiences. We have been at odds with the school district for 24 months of fighting with the school district for just the basic rights according to the law. DS starts private school on Tuesday, with OT and speech still through the hated school district. Mommy gut is that this is the right place, but who knows.

Feel free to PM me anytime to vent with someone who gets it.

 

[happymommy]

Hang in there! Thank God you've gotten him help early. You sound like a very involved and caring Dad.

My son has ADHD (very bad) but also food allergies. The reaction your son has to soy makes me wonder if you could get him tested (do a blood RAST test not skin prick). By the way, the two, real food allergies and the autism or ADHD, are not related, BUT your son seems to really react to soy. I have asked my son's allergist about this numerous times (he's the head of pediatric allergy at Johns Hopkins in Baltimore) and he hasn't seen any more kids with food allergies have ADHD. I am just concerned about the reactions. It may just be a good thing to know if he has an allergy, as reactions can become life threatening unexpectedly (like getting sick to your stomach once, then going into anaphylaxis over a small amount, like my son had happen).

Also, if you aren't getting what you know your son needs from your school system, it may be worth it to you to hire an advocate. My friend has twins with severe speech apraxia and she did this with great success. It cost a lot initially, but the advocate got her the help they needed, and they got to repeat first grade (after the system wouldn't let them repeat kindergarten).

Good luck!

 

[MightyMom]

........great big sigh..........

I live in Texas too. I understand your frustration all too well.

DS8 has cerebral palsy. He doesn't qualify for PT in the school district despite his inability to walk independently! The PT who did the eval said that DS doesn't have to know how to walk in order to learn.

So basically, if the child's disability does not hinder the child's education, the district will not provide therapy.

DS does not get PT or ST at school. He does get OT because his fine motor skills do hinder his academics.

I take him to a private therapy facility 3 times per week. On Tuesday and Thursday he does not go to school until 11am. The school has already threatened to file truancy charges against me.

So the school won't provide the appropriate therapies.... and they penalize me for trying to do what is my son's best intererest.

SO FRUSTRATING!!!

Now... on to DS4. He has MAJOR sensory issues too. BTW, if you haven't read "The Out of Sync Child" you should.

DS4 qualified for the evaluation by the school district because he was in an early childhood program because of his prematurity.

Immediately the diagnostician referred him out for a autism test. In my mind I had already come to terms with the fact that DS would probably be labeled autistic.

Nope! Just Sensory Integration Disorder, Speech and Feeding delay. hmmmm.......

Well, we've done some intensive therpies with him including LiFT. (Google it if you're not familiar)

He's made tremendous progress. but there is something a little "off" still.

I won't be surprised if he is eventually diagnosed.

Anyway... I just want you to know you are not alone. I've read other states handle things much differently and all children with disabilities get the services they need without having to fight so hard. Maybe it's just an urban legend.

 

[eyeore]

i would suggest you head over to the disabilities forum on the dis. those guys are full of information and may be able to help you out

 

[Texasmomof3]

I live in the same area too (Keller schools) and don't have any experience but my heart goes out to you. My sister-in-law who lives in Abilene had some of the same issues with my niece several years ago and had to fight tooth and nail to get them to even test her. I know that she had to threaten to get a lawyer and did alot of investigating on her own as to what she was eligible for and it finally worked. It did seem that every year she had to fight again and again until they knew she wouldn't give up. There are alot of support groups who could probably help. My daughter had an autistic boy in her class last year that did super. Her teacher was really super special and made sure the kids supported and encouraged each other and became everyone's friend. My thoughts and prayers will be with you.

 

[chrismartinique]

I have a daughter who has had some learning problems. She is 8 now & things are "fair." I am sick to death of the labels, the annagrams etc. these school personel put on a child. I hate to make excuses, but am I the only one who believes the curriculum is way advanced just so the schools can live up to state regs and stats? If a child isn't thriving or keeping up, it is always that there is something wrong with the child. I have nothing good to say about the school systems around me - don't know how it is elsewhere. I have been frustrated for a few years now, and I just accept that its my problem & will have to be my solution - we are not poor enough or sick enough to receive any real help.

I'm sorry for your situation. I hope you find a resolution - you certainly seem on the ball and you will not let your child slip through the cracks.

 

[kimmylaj]

hugs to you , you are already doing a great job. i am a prek teacher and early intervention really makes a difference. feel free to vent whenever you feel the need . everybody here is a really good listener.

 

[ERMama]

My son saw a neuropsych also and we got the adhd diagnosis that does seem to fit him.

I hope he gets the help he needs!!

(My son is one of those fortunate ones. He got into special ed/Early Childhood thru the school district with only a developmental delay diagnosis. He got 4 days a week "preschool" and speech and OT. He went into a normal K class with sp.ed help and still had some issues. At the end of year meeting the school said "we are not doing enough to help him" and actually increased and changed his services to better suit his needs.
We know how very lucky we are and wish everyone could be so fortunate.)

 

[natnelliesmom]

I am a certified special education teacher in CT- and I can tell you honestly that school systems can sometimes drop the ball on these kids if their parents are not proper advocates. It sounds like you are on top of things- but I would definitely recommend hiring a lawyer or at least an advocate.
When schools see a lawyer coming in for the PPT meeting they will usually bend over backwards to make sure you are satisfied. Some lawyers specialize in these cases.
It's also a good idea to at least discuss this with an advocate since these professionals have so much more experience and know exactly what to do to get your child the help he needs.
You are right to get this ironed out now- he can start school with a proper plan in place to give him what he needs. He'll make more progress and have fewer problems down the road if it's all straightened out from the start.
Good luck,
Sarah

 

[perkinsrose]

You sound like you're on top of it and educating yourself and doing all the right things. Despite the missed diagnosis before, your child is still very young. Early intervention is critical. In our state there is a 0-5 intervention/services program for children with needs--before they are in the public school system. Maybe inquire of such program in your state?

When I was teaching children in a regular classroom with autistic tendencies and sensory issues, this book helped me alot.


The Out-Of-Sync Child By Kranowitz
is a great book on sensory integration dysfunction

https://www.amazon.com/s/ref=nb_ss_...&field-keywords=sensory+integration&x=15&y=32


Support staff at school also recommended gum chewing right before class (stress relief) as well as firm pressure down from top of shoulders and arm & shoulder massage with a surgical sponge (stiff plastic) to help with focus & centering (I suppose related to "Proprioceptive sense" you mentioned?).

One of my student's(with autism) parents hired a child advocate attorney to help secure some basic services at age 5 in preschool (they delayed kindergarten one year). Obviously an attorney is financially out of reach for many but it helped this quiet & reserved parent advocate for her child. This parent & attorney were able to secure a full-time aid to shadow the child in mainstream classroom in preschool and kindergarten (I've lost contact with them after that). I believe the district wanted the child placed in special ed. For this family, at home a specific technique program for behavior &speech development & they had much success--Lovaas Method.

"Behavioral Therapy
('Lovaas Method', 'Behavioral Intervention', 'Applied Behavioral Analysis'(ABA), 'Discrete Trial Training' (DTT))
Use of behavior modification was originally developed by B.F. Skinner (a prime developer of Behavioral Psychology). Lovaas and others have adapted it as a therapy/educational method for autistic children. Behavioral Therapy has a lot of advocates who are insistent in their claims that it is the only method with a study (complete with control group) documenting its success rate. The study is documented in Lovaas's paper "Behavioral Treatment of Normal Educational and Intellectual Functioning in Young Autistic Children'."

http://www.suite101.com/article.cfm/autism/29434

 

[mrsstarwarz]

I would suggest finding a local Autism chapter in your area, they can help greatly with school issues.

I have a ds who has a mild case of Asperger's and adhd and since he has been reading since he was 2 and does super well at school the school refuses an IEP. But I still can get him a 504 plan and with the help of the principal was able to get everything I wanted in the IEP in the 504.

Check out info on 504 and IEPs...lots of times school "misguide or bend the truth" to a parent. If you know the law,,,you know when they are bending to your face.

Louisa

 

[GoofyFairie]

I just wanted to send some happy thoughts your way. Keep fighting for your son, he is depending on you and you are doing a great job thus far! Learn the ins and out of the laws like a previous post suggested and let the schools know that you know you are entitled to services since you pay your taxes. Don't threaten them, but don't be afraid to get a lawyer either to help you either. Good luck! And remember special parents are choosen for special children and God doesn't make mistakes.

 

[deb24k]

As a special education teacher in MA I must say that you have received some very sound advice in both hiring an advocate/attorney and contacting your local Autism support program. Sometimes the support program can offer assistance in finding appropriate contacts. I am appauled but not completely shocked to read that your child, somehow, doesn't qualify for services in your district. Honestly, there are federal laws that stipulate the qualifications for services, unfortunately they can be open to some interpretation as the language is wether or not the child is making "sufficient progress."

Many school systems will bend over backwards to appease or at least compromise with a parent who hires an advocate. The cost of going to "battle" simply is not worthwhile. You will forever be your son's best advocate in this world!

I might also suggest that you inquire about home training programs and social skills groups through both your your local Autism support/advocacy program and the public school. This has been an invaluable service to many families who I service.

 

[disneymarie]

Can I vent/ramble? I am going to just ramble because being a guy... my friends don't want to hear it... and my wife and I have talked it to death...

My DS is 5 years old and we received many reports about his behavior and lact of attention span and hyperactivity in private preschool. The preschool recommended having him tested for ADD, ADHD. We did and were told it was to early to test him (3 years at the time) by our pediatrician. He did however recommend PT and OT for him as he was delayed quite a bit. 4 months in to PTOT he was deemed age appropriate.

Last year it became apparent that he was struggling with 3 year old concepts at age 4. Unable to learn the alphabet, numbers, etc. He is a very intelligent child and has an expansive vocabulary, can work a computer despite not being able to read, problem solver, etc etc.

We had the school district we would be attending come in and observe him for a 'comprehensive' autism evaulation at his private preschool. 10 min later he was given a clean bill of health. No autism! Whew! How happy we were in our naive little world.

Next up... have him checked out for dyslexia was the next suggestion. Evaluation showed probable phonological awarness disorder and maybe dysgraphia.

Move to this summer. Five years old. We decide to have neuro-pscych test at pediatricians suggestion. Very intense 6 hour session for him and tons of paper work and evaluations for us to fill out.

Diagnosis...

wait for it...
wait for it...

PDD-NOS which is on the Autism Spectrum! (thanks school district) Sensory Integration Disorder (Proprioceptive sense affected) and possible auditory processing issues. (testing for that next week)

For the PDD-NOS his most delayed part is receptive communication and sequencing. he is understanding most communication at a 3 year old level. Makes sense to me now. "Son take your shoes off and put them away" would often net me shoes off laying in the floor. Many teachers also told us 'he just doesn't want to listen to direction' and 'stubborn' was used.

His Sensory issue is his proprioceptive sense. (hard to explain, but your bodies sense of where it is) This causes all kinds of inappropriate personal space violations for other people as he sensory seeks. He hugs very hard, likes other people to sit on him, etc.

Things that we are doing for him

Casein free diet. We tried gluten free and that did not seem to have any effect however after we took him off Milk products of all kind he many breakthroughs. Overall calmness, opening up to his peers, better memory and sequencing. We are currently not giving him soy because his stomach just can not handle large amounts of it. He will vomit or have intestinal issues if too much soy is introduced. A Godsend has been Almond Milk. While expensive it tastes good (like a vanilla flavored milk) and he can eat cereal, etc.

We just started him on PT/OT/ST at a local therapy per the neuro-pysch eval. We are greatful that we have insurance that pays for 20 PT and OT visits a year (minus $30 copay) and unlimited speech therapy.

He is in a swimming program for children with disabilities. He was terrified of the water at the beginning but now is a fish. Swimming is great for some sensory issues!

We are debating putting him int o social group therapy because insurance will not cover it.

We are fighting two school districts tooth and nail to get special services or speech therapy for him. I apologize for my language but for the most part they SUCK. I live in one of the most desirable (supposedly) school districts in Texas, (Grapevine-Colleyville ISD) and they give us ZERO support. They suggested we put him in kindergarten at 5 and let him fail so he could be held back at which point he could receive services. (that sounds logical) Now since I live in a city served by two different school districts I pay property taxes for both districts. The other schoold district Hurst Euless Bedford ISD has been a little better but they are saying the other school district needs to provide services for our child.

I just want my son to have every opportunity to learn and be as normal in every aspect he can in his child, young, and adult life...

Someone encourage me or tell me it gets easier?

Your son is covered under a 504 plan for his disabilities. That is part of the Americans with Disabilities Act. They ahve to provide him with EVERYTHING he needs. Sure they may not want to part with a dime and stall and figure you will give in but he IS entitled.

Did they mention aspergers by anychance?
My dd has panic/anxiety to the point she has become school phobic. She is highly gifted, but has low self esteem and very sensitive. Kids are brutal at that age too.

Keep pushing. I hired a educational advocate, and consulted with an attorney that deals in educationsl discrimination.
Be pushy, demanding, get better answers!
di

 

[Mommy2cody]

No advice, just wanted to tell you good luck and your son is lucky to have good parents who are doing everything they can for him!!

 

[KirstenB]

Does either school system have special ed preschool? Our younger dd who is just turning 3, was dx'd with high functioning autism last summer. I go back and forth on this dx, but at a minimum, she does have gross motor delay, motor planning delays, and speech delay, and finally, sensory processing disorder. Regardless of the label, she was in Early Intervention through our county, receiving speech and PT.

She's just started special ed preschool, where she'll continue to get speech, PT, and they added OT. In 4 days, she's started walking down stairs, has added quite a few words to her talking, and is a much more calm and centered child. This preschool is very intensive with small classes. Rather than waiting for kindergarten, is this an option for you?

BTW, we took Zoe off of dairy last fall. What a huge difference!! The only way I can describe it is, it's like she came out of a fog. I'm very impressed with how thorough you all have been in trying different therapies. It makes such a difference for them to get help now, instead of when they're older.

Finally, my heart goes out to you. This whole process has made dh and I much closer. Regardless, it puts a strain on the whole family. I wish you all the best.

 

[Nazran]

Thank you all for the listening, advice, and thoughts. I will digest all of this information a little later. Thanks.