New to this and feeling very overwhelmed!!

[gypsybug]

Hi everyone,

I came across your forum while searching for help on understanding ADHD and Aspergers. My 8 year old son has had quite the history of not being able to function well in a learning environment, even back to preschool and daycares before that. All his life I have had various people from these places, and family members, constantly telling me that "oh, he is adhd. Definitely. You should really do something about that. Soon." While giving me a look...

I was not convinced and so I tried finding other, more natural solutions, to help him behave better and understand consequences. These ranged from various vitamins to trying the elimination diet to trying every book out there on making kids behave with various versions of time-outs, reward systems galore, losing possessions, positive reinforcement. You name it, I likely tried it. by the way, his issues are strictly behavior, mainly social. His grades are perfect, he never requires any help beyond pushing him to actually finish it and turn in work. His standardized test scores have consistently been among the highest in his school.

Enter 2nd grade and at this point, I'm exhausted from our battles. In the first two weeks he nearly gets booted from the before/after school program and I am called to a meeting with his teacher. I'm done, fed up, can't take hearing it anymore. After an entire night crying about it, I took him to his pediatrician, laid it all out and begged for help. She ordered an ekg and a echo and blood tests and a couple weeks later, put him on Concerta (18). This was in October. He seemed to improve a bit, at least as far as impulsivity and aggressiveness goes. Calmed down quite a bit, but still extremely distractable. So it seemed.

His doctor did not want to manage his medications, not her specialty, so she referred us to a behavioral center to take over. It took seven weeks to get an initial appointment, and we had to meet twice with an intake specialist (an LPC). She filled out all the info from her questionaires and ordered additional bloodwork. In our second visit she pulled out a checklist and asked me to fill it out. It was for Aspergers.

Our third visit was with the psychiatrist to begin medication mgmt. While in the waiting room, the LPC came out to see us and pulled me aside. She told me he scored "off the charts" for Aspergers and went on to demonstrate some techniques with him to help me help him make eye contact, which he NEVER does, as well as to help me understand it. Suggested I learn more about it and informed the psychiatric of his score. 15 minutes later, my son is relatively calm in his office though thoroughly distracted by his "stuff" while he and I talk. He states he just "doesn't see it" for the aspergers, increased my bumblebee's concerta to 27 and sends us on our way. Since then we have had one more appointment with him where he was more focused on getting us hooked up with a 3 month by mail script and "we'll see you in April".

Enter yesterday. I got called back to the school to meet with the teacher and the principle. His grades are slipping, but only because he is distracted and not getting work done in time. His is complaining of headaches that always occur after being in the extremely loud cafeteria. He keeps avoiding group activities by literally just walking away and doing something else regardless of what is said to him. I told them about what the intake specialist said about aspergers. The principle lit right up and said she was so glad to hear that because that is what they think too. They want so very much to put an IEP plan in place for him and support him. He is so smart and has made an overall positive impression. These are good peeps.

I'm miserable. I feel like such a jerk. I missed so many signs it's not even funny. All his life he has always given what I call "hard hugs" he hugs so hard it's painful and won't stop until you make him. Always sighs so contentedly and almost glazes over with like a euphoria. His principle said it's compression, a sensory thing, and also his issues with crowd noise. They are already going to put some help in place. Like giving him a little balance cushion on his seat so he can wiggle at will and making a little island in the classroom for him to go to when he needs a break. They are going to scare up some earmuffs or headphones for assemblies and cafeteria if he needs them.

But they can't do an IEP without an "official" diagnosis. We are moving to CA in July, and this school wants to hook us up with as much information, plans and even an IQ test so that we can take them with us to his new school and start him off right. His appointment is this afternoon and I feel like I'm gearing up for battle and I don't know what armor and weapons to equip!

I'm sorry this is so long. I needed to vent and express and biotch....I feel like **** and I'm trying to get all tough for this and demand his medications be adjusted to cover his anxiety issues too and that we really spend some time getting this right. Ok...thanks. I'll quit now before I cry ... again. Sorry if I got all the abbreviations etc wrong. There are so many lol!

 

[TeDo]

I don't care what the school says, they HAVE to evaluate him for services when you send them a WRITTEN request for your son to "be evaluated for special education services including but not limited to thorough academic, psychological, behavioral, Occupational Therapist (OT), Speech-Language, and autism evaluations". Send it Certified Mail with Return Receipt Requested as soon as possible. This starts a Federal timeline for them to evaluate every aspect of his school performance and skills. Don't let them tell you he can't get services without a diagnosis. That is BS!! This will also put certain protections in place for your son when it comes to disciplinary actions.

As for the psychiatric, I would go looking for a different one. You NEED to have one that will listen to you. Just with the things you've shared so far, I think your son is definitely on the autism spectrum. I have had to argue with teachers and social workers who "just don't see it" but I KNOW my son. I LIVE with him. If they won't listen to you to "see" it, you need to find someone that will listen better. The one you have now is deaf!!!

Just an FYI from someone who's beeen there, kids on the autism spectrum don't usually respond well to stimulants. A lot of the ADHD symptoms are actually part of the Asperger's. In our case, difficult child 1 is EXTREMELY hyper without ADHD medications but he cannot take stimulants.

A good site to learn about autism spectrum is Autism Speaks |. Another good site for books and other good stuff is Autismshop.com - Autism Resource Network, a one-of-a-kind Book Store packed with merchandise and information for individuals with Autism Spectrum Disorders (ASD) (Autism, Autism Spectrum Disorders (ASD), Asperger Syndrome, Asperger's, Pervasive Developmental Disorder (PDD), PDDNOS). We provide resources for parents, families, children and . Typical punishments and reward charts, etc don't generally work with our kids. Kids on the spectrum think very differently from us. Their logic is not the same as our logic. To make things work for HIM, you need to figure out how HE thinks. A good book to help you get there is The Explosive Child by Ross Greene. Using his approach is what made me realize HOW differently difficult child 1 thought. Another good book to explain to you how your son kind of feels is What Your Explosive Child Is Trying To Tell You by Dr. Doug Riley.

Good luck and keep us posted.

 

[DDD]

Welcome, Gypsybug. So glad you found us. This is an awesome site with caring and often knowedgable parents. You'll get input from different perspectives and soon you will feel confident to sift through the suggestions and find comfort in your position. Hugs. Yes, we know it is hard.

You are already doing many things to advocate for your son. Alot of people don't even recognize that there is any problem until their difficult child's are older. I raised an ADHD and Asperger's grandson for almost nine years. In our case the adhd stimulants were of great help to him and still are. We had four psychiatrists before we found one who was the right fit for our family. It's not easy finding a psychiatrist who listens well and is ready to change medications as needed. been there done that with ten to fifteen minute apts and three month waits for the next appointment. Sigh!

I agree that you should request an IEP now instead of waiting until you relocate. It will protect your child, provide services and also give you time to see what seems to work best to help him. When you get to Ca. they will have valuable input for outlining services there, too.

Do you have financial resources? Private insurance? If so I would suggest trying to get a complete neuro/psycholical evaluation. The evaluations usually take six to eight hours, are done by experts and provide a complete analysis of capabilities and areas of need.

Sorry that my response is so long. I'm just long winded, lol. Again welcome. DDD

 

[buddy]

Hi there and welcome to the CD Board! It is pretty hard to accept we dont catch every little issue to help support our kids but we simply can't. The fact that you have a school with folks who really DO see it, WOW that is a huge deal. I wish they had clued you into their thoughts long ago, but sounds like your psychiatric doesn't get it.... Many dont. These are just folks who train in their specialty areas and if they don't really study the full spectrum of autism, they often miss it. No worries, just find someone who does get it.

From what you are saying it is not even a close call (asperger's) and that is a huge step forward! There are lots of things to get started on and for sure start with an IEP.... for one thing, he needs individual support to navigate the rules, social landscape and changing demands placed on kids for all things not specific subject related (for him, for now)... like organization, direction following, etc.

For another thing, as he gets older, it is common to find more and more staff who, without it written on a legal document, will hold him to a standard he may not be able to achieve without some support.

Aspergers is a life long issue. But that does not mean who he is today he will be as an adult. he has ability to learn and the potential to live a very meaningful life.... and depending on his level of functioning, he will likely live a mostly independent life. But he does need very specific treatment and learning methods to get there, and as you already have found out, just doing reward stickers and consequence/punishment methods does not work. As you read up on more and more sites for Asperger's you will see there is a lot of hope in this. (though, I for sure--and I can bet most others here---bawled and still have moments like that in grief over MY child having to deal with this.)

Do they already have an assessment meeting planned so you can sign off on getting him assessed for an IEP? IF not, just write up a letter to send registered mail/return receipt asking for a complete evaluation and any IEP follows you anywhere in the USA. Save time and headaches getting it done so that they are legally obligated to support him from the second he gets to the new school.
(if you have time...but you can get it started anyway).

Do NOT be too hard on yourself...lots of professionals have been watching him and not saying it so why should you have caught that? But you know now.... so go ahead and cry...it is part of the process but also remind yourself that your son is so blessed to have a mom who doesn't give up and is even here on this board looking for support!

HUGS and understanding..... Dee

 

[BusynMember]

Hi and welcome! You are lucky he is so intelligent because that will help him a lot. I also wanted to add that I agree...many Autism Spectrum Disorders (ASD) kids do not do well on stimulants. Mine didn't. I was told that many spectrum kids are sensitive to medication. Right now my son isn't on any. He has just turned eighteen and frankly we haven't seen much of a benefit to taking medications and he doesn't like them.

 

[gypsybug]

Thank you all for your responses. TeDo I will definitely be checking out those resources.

Well we went for the psychiatric appointment tonight and I laid it all out for him. Told him I believed I had done him a disservice by taking him to his pediatrician for this and that I did not believe his diagnosis to be quite right. Told him everything I hadn't mentioned to anyone because, before learning about aspergers, I simply didn't know these were symptoms of anything. I just believed them to be personality quirks. Like the hard hugs, the little repetitive noises he makes when he eats (I thought he just really appreciated my cooking since they sound like mmmm, lol), rubbing his head along the carpet like a wheelbarrow since he could crawl (not so much now but once in a while) his constant chewing on things etc.

I told him flat out I thought his LPC was right and that I wanted to start finding things that will help him deal with the anxiety and headaches from crowds, and his social skills. Bottom line, when I walked out of there I came out with an official diagnosis of aspergers with a possible side of adhd. He is keeping him on the Concerta 27mg for the time being, and has added 1 mg of intuniv. If he has any issues or doesn't show signs of improvement I can go back in and we will try something different. He also wrote out a note for the school stating my son is in treatment for Aspergers and to get an IEP set up for him.

So tomorrow I'll contact his teacher and get the ball rolling there. His principle said she would then call in the school psychiatrist and and we'll start building up his support system. Then once we've done what we can, I can then take all of this documentation to his new school in CA and hopefully, get him started on the right foot in 3rd grade.

I feel both better and worse. Better because now I feel like we might actually make some PROGRESS, worse because dang...this isn't what a parent really wants to hear.

SO, at this point, I guess I need to become a student and actually learn how to interact with him and what I need to do to support and encourage him. I'm pretty sure some of my standard parenting responses have not ever helped him, and may have done more harm than good. I feel a bit like a fish out of water.

For those of you who are experienced in this, any immediate advice for his environment here at home? Ideas? I'll get the recommended books and check out the sites, I'm just wondering what else I can do. Of course, now that I understand his need for the hardcore hugging, he'll be getting a heck of a lot more of that!

Thanks so much. I'm so glad I found you guys! All this time I've just believed I must be the world's worst and obviously most inconsistent parent but apparently it was never as in my control as I thought.

 

[TeDo]

There is nothing to feel bad about. Little things will make all the difference. Hard hugs means he either doesn't register pressure or that he likes the deep pressure. A weighted blanket can help with the deep pressure. Since he has sensory issues, you really should find a good pediatric occupational therapist. Ours has done wonders and if they do a thorough evaluation, you might be amazed at what else you find. They can also help teach you ways to help with them. difficult child 1 has soooo many sensory issues that school IS hard for him. Just think about all the noise not to mention the demands placed on the kids. Your son definitely needs an IEP to help accommodate some of that stuff. Don't count on the school doing much with just a verbal agreement. To actually compel them to do everything and do it in a timely manner, you need to make the request in writing and have written verification that they received your request. If he gets an IEP this year at the current school, the school in CA will follow that as a working one until they can get things done for themselves. Please don't wait until you move to get an IEP. It will only help in the long run.

As for things at home....schedules are wonderful and for his age, a picture schedule works great. They need routine and help transitioning from one activity to another. I have to give difficult child 1 "countdowns" before switching activities. Things like 20 minutes until you have to get off the computer for supper and then again at 10 minutes and then 5 minutes. Too many in between irritates him so I stick to those times. That goes for ANY transitions if I want them to go smoothly. Sometimes I have to compromise. Time will be up but he is just finishing a level. When I tell him time is up and he wants to finish, I agree that he can finish but then he HAS to do the next thing.

Also, they have difficulty putting things into words. In our house, that is HUGE. We are doing speech therapy to work on expressive speech.

Another no-no in our house is using vague language such as later, not now, maybe.... Kids on the spectrum are very literal thinkers. It is a process to learn to remember that but you'll get there.

There is a lot of hope for your son. He's young enough that with interventions now he can make great strides. There is a lot of hope. You're on the right track. Keep going.

 

[gypsybug]

Thank you TeDo for the ideas. I stopped in to chat with his school principle this morning when I dropped him off and we are going to do the IEP asap. I also handed her a formal written request. They know about our move in July so they intend to have everything ready to go to help him transition into the new school. Once I know where we'll be living and exactly what school he will attend, I'll make arrangements to get in and talk with them before the new school year starts.

I am definitely getting a weighted blanket. The past two nights I have burritoed him into his bedding and it's done WONDERS. Normally he doesn't settle down and constantly gets back up to play or sneak read. Once I burrito him, and after a good long goodnight hug, he just passes right out.

We've always had a pretty good schedule at home, mainly because for all of his life, I've been a single mom. Having the schedule just saves my sanity and ensures everything that needs doing, gets done. I'm engaged to a wonderful man now, who is very on-board with this and he has helped shoulder a bit of the load. I have never actually written out, or set up a diagram of the schedule. He would likely love it if he got to help. He loves creating "blueprints". And I do the advance warnings for changes, especially with bedtime, so he doesn't fly off the handle. For the most part, it works well. Sometimes I forget and boy do I regret it. At least I have that part down.

I didn't know about the vague language and the literal thinking. I'm terrible with saying things like later, not now etc. That's something I an work on. And I'll look into finding an pediatric occupational therapist around here. Thanks for that, I'd never have thought of it.

So I guess I know where to go when I need help, or just some understanding ears.

 

[DDD]

Sounds like your home environment is already peaceful and scheduled which is a huge advantage for your son. Others have given you wonderful advice and I am so impressed that you have a supportive school administration. I can't express how fortunate you are to have caring responsive educators to turn to for additional help. That doesn't happen often.

Your son is a very lucky boy. Hugs DDD