Any other Aspie families?

[LoveMyJonah]

My almost-five-year-old Jonah is diagnosed with Asperger's Syndrome and ADHD. I'm at the point now where I am grateful for his diagnosis because of all of his wonderful gifts. He's such a special child. The ADHD is a bit of a challenge, but no meds for us. He's only in preschool anyway.

Any other Aspie families out there?

[damona]

my 9yo has aspergers and adhd. i do medicate for the adhd, b/c otherwise he is just a total space case and can't sit still for 2 seconds. school was beyond challenging, they were telling me that if he wasn't medicated they were going to request that he be pulled out. (hey, 3 years later, and i'm pulling him voluntarily to homeschool. but anyway.)

i also have an 11yo with severe adhd, a 7yo with pdd-nos and food sensitivities, and a 5yo with adhd and food sensitivities/allergies.

[Linda on the move]

My 13 year old DD has asperger's, but isn't ADD. She's not on any meds, but if her anxiety gets bad again, she will be.

[sbgrace]

Hi! My six year old was dx'd with PDD-NOS at 2.5. We were told to bring him back to assess for Aspergers at six (they won't dx. that younger than six around here) but the switch wouldn't change anything we do and I think he's actually a better fit for PDD-NOS anyway as "atypically autistic" fits him well.

He's also got severe ADHD--Inattentive which is, at this point, looking to impact his life as much or more as the autism stuff. It's certainly the piece that makes homeschooling hardest! He's got so many strengths of course as well. Though he's not currently medicated if I've learned anything on our special needs journey I've learned never say never and so that's always a decision that can change if needed as school and life demands get greater.

[lotusdebi]

My older son has high-functioning autism ("Asperger's-Plus" is the term I've heard), sensory processing disorder (primarily sensory-seeking plus auditory-defensiveness), and suspected ADHD. He's on supplements (magnesium, GABA, digestive enzymes, extra vitamin D, Fish Oil, plus a regular multi-vitamin), melatonin to help get him to sleep, and a casein-free diet. He uses weighted blankets and lap pads, and we're adding a weighted vest and ear muffs soon. He's in OT 2x/ week, social skills group 1x/week, and psychotherapy 1x/week. I'd love to get him a speech eval, but we don't have time for speech therapy until we can drop something else.

Once he started on the supplements, his often-violent meltdowns and anxiety stopped being our primary problem. Now his attention deficit is our major concern, though we've seen some improvement since we removed casein from his diet. I plan to continue supplements and dietary changes until they're no longer effective. I'm trying to avoid turning to prescription psychopharmaceuticals for as long as possible. My kids are at increased risk of severe mental illness (depression, bipolar, and schizophrenia) due to genetics, and I'd prefer to hold off on that type of brain chemical manipulation until I really need the big guns.

[LoveMyJonah]

Nice to "meet" everyone

The ADHD is our biggest challenge right now as well. He's getting OT for sensory, fine motor delay and attention and seems to be improving, but the improvement is slowest with attention. I do think he'll have to be medicated at some point - but not until he's in real school. He's repeating Pre-K next year to work on his behaviors. He's a late birthday anyway and he's teeny tiny.

[christinelin]

My 7 yo DS has Aspergers, too. He was diagnosed at 5 and we are fortunate that he doesn't have any co-occuring conditions. He is unmedicated since nothing is appropriate to treat the social stuff, which is his main symptom.

I think many people with an AS/ADHD combo struggle more with the ADHD piece. Are there school accommodations that might help? Have you looked into any alternative therapies to help with attention issues?

[taubel]

My son is 8.5 and has been diagnosed with mild Asperger's and mild ADD since 3.5. He is in regular school with some pull-out/push-in therapies. We did repeat kindergarten by choice since he also was a young kid (Sept. birthday) and needed more time to mature. The extra year made a huge difference.

We do not medicate him, and our school district and special ed services are excellent. School-wise, the ADD is a huge problem. My son can sit still, but he cannot focus on anything! We are hoping he will gain more control of his attention in the next few years - or at least develop coping mechanisms.

Good luck with your son! One of my other sons is named Jonah - great name!

[LoveMyJonah]

Originally Posted by christinelin

My 7 yo DS has Aspergers, too. He was diagnosed at 5 and we are fortunate that he doesn't have any co-occuring conditions. He is unmedicated since nothing is appropriate to treat the social stuff, which is his main symptom.

I think many people with an AS/ADHD combo struggle more with the ADHD piece. Are there school accommodations that might help? Have you looked into any alternative therapies to help with attention issues?

We are trying ABA therapy and occupational therapy for the inattention. So far it's slow, but helping a little.

Anyone else's child have feeding issues? Jonah is not currently in feeding therapy, but I am doing some treatments with him at home. Trying some tactics I learned from therapy videos and it's really helping. We do a five bites then five minutes of a preferred activity, repeat. It seems to help since the eating sessions are shortened. He still eats like a bird and is only 32 lbs at nearly 5

[jacer]

Hi I have three sons all dx aspergers. The middle boy is also being assessed for central auditory processing disorder and the youngest for adhd as well.

My oldest is working full time, in a relationship and is going to be a dad this year as well as being stepdad to his partners daughter.

My younger two have been homeschooled for the past four years and at this stage aren't medicated.

[LoveMyJonah]

Originally Posted by jacer

Hi I have three sons all dx aspergers. The middle boy is also being assessed for central auditory processing disorder and the youngest for adhd as well.

My oldest is working full time, in a relationship and is going to be a dad this year as well as being stepdad to his partners daughter.

My younger two have been homeschooled for the past four years and at this stage aren't medicated.

How is homeschooling going? My nextdoor neighbors homeschool and recommended it to me, but I was more concerned he get services from the school district and try to function in a typical setting. Just looking for your take on it. I'm intrigued.

Congrats on the grandbaby!

NEW question:

Does anyone else either have high functioning Autism or have a spouse with it? My DH would have most likely been diagnosed about ten years ago but has overcome a lot. Now that he's realizing that he may be on the spectrum as well, he's not trying as hard as he used to. Which is good for him, but it is frustrating to me because people think he's being rude.

[Kristine233]

My son has a Autism dx, but it depends on the day. His first dx was Asperger's and refined to Autism. They both fit at times, lol, depends on the situation. I think there is a pretty fine line between them.

We do have to medicate and I put it off for a LONG time because I'm pretty anti-meds for a lot of this stuff, but along with the ASD he has anxiety and that was pretty dominate and starting to interfere with his day-to-day. Its made a world of difference!

Originally Posted by LoveMyJonah

NEW question:

Does anyone else either have high functioning Autism or have a spouse with it? My DH would have most likely been diagnosed about ten years ago but has overcome a lot. Now that he's realizing that he may be on the spectrum as well, he's not trying as hard as he used to. Which is good for him, but it is frustrating to me because people think he's being rude.

I have Asperger's. When I was young my parents took me to various "professionals" but it wasn't widely known about back then so I didn't get a dx at the time. Over the past several years I had others tell me yeah they think I have it. More recently I decided to get an official dx. I figured that if I want my child to feel comfortable with his dx I should lead by example and make mine official.

IMO, it does help to know what it is that makes me different. It helps me understand myself and help my family understand as well. I now know why I do certain things and have trouble with others. I don't have to be so hard on myself and can still strive to be everything I want to be at the same time. It also helps me recognize when I need to work a bit more on certain things to be more "socially" acceptable. I'm setting a good example for my son, while still holding onto "me". My Aspergian traits have a lot to do with who I am, what I choose to do career and hobby wise and my success at those things because of my obsession and persistence to do those things "completely". lol

[Peacemamalove]

My DD was diagnosed with Aspergers just a few months ago until then she was diagnosed with pdd-nos.

I has been really tough though we are glad to finally have a diagnosis.

I would love to hear any tips or advice anyone has.

[ericswifey27]

Originally Posted by LoveMyJonah

We are trying ABA therapy and occupational therapy for the inattention. So far it's slow, but helping a little.

Anyone else's child have feeding issues? Jonah is not currently in feeding therapy, but I am doing some treatments with him at home. Trying some tactics I learned from therapy videos and it's really helping. We do a five bites then five minutes of a preferred activity, repeat. It seems to help since the eating sessions are shortened. He still eats like a bird and is only 32 lbs at nearly 5

My son has Asperger's or HFA (plus ADHD), depending on who you ask- how did you go about seeking ABA? We would like ABA services but don't know where to start. He just qualified for Regional Center Services (California) but the case worker alluded to the fact that he would not qualify for working on goals such as greeting me when I get home from work, or answering questions like "What's your favorite thing to do?" through ABA. These skills can be met through ABA, can't they? or maybe RDI? Aargh.

Anyway, another Aspie family over here...
And also my son is skinny and very picky about food/certain textures. I like your idea for getting him to eat more...

[ericswifey27]

Originally Posted by LoveMyJonah

NEW question:

Does anyone else either have high functioning Autism or have a spouse with it? My DH would have most likely been diagnosed about ten years ago but has overcome a lot. Now that he's realizing that he may be on the spectrum as well, he's not trying as hard as he used to. Which is good for him, but it is frustrating to me because people think he's being rude.

Funny you should ask... after my son got diagnosed I asked his psychologist about the possibility of me being on the spectrum... as I did my research about his behavior and issues I saw myself in alot of what I read. so I have an appt. on Monday with a colleague of ds's pyschologist to follow up on that. It would explain a lot. I was very similar to my son as a child but back then it was just "she's shy, she's overly anxious, she has a bad temper, picky eater, strong-willed, she's not trying hard enough at writing skills, Is she deaf? etc. " There's a lot more that I could go on about.

My son's pyschologist says that happens a lot- when the child is diagnosed a parent soon follows...

[LoveMyJonah]

Originally Posted by ericswifey27

My son has Asperger's or HFA (plus ADHD), depending on who you ask- how did you go about seeking ABA? We would like ABA services but don't know where to start. He just qualified for Regional Center Services (California) but the case worker alluded to the fact that he would not qualify for working on goals such as greeting me when I get home from work, or answering questions like "What's your favorite thing to do?" through ABA. These skills can be met through ABA, can't they? or maybe RDI? Aargh.

We were extremely lucky and the Behavioral team that treats him decided to use ABA in his situation. I get charts along with my monthly reports that are SO incredibly helpful. We have a really experienced team though and we're also in an amazing county for services. Do you have a case worker? maybe ask them how you can get ABA?

[ericswifey27]

Originally Posted by LoveMyJonah

We were extremely lucky and the Behavioral team that treats him decided to use ABA in his situation. I get charts along with my monthly reports that are SO incredibly helpful. We have a really experienced team though and we're also in an amazing county for services. Do you have a case worker? maybe ask them how you can get ABA?

I had a meeting last Monday and asked my intake caseworker. I told him I wanted to add goals for building social skills and functional language skills (like greeting me when I come home from work, offering assistance to his brother instead of just ripping a toy from his hands to "fix" it etc. His response was "That is speech therapy, we don't pay for that. You have to get it through your school district or medical insurance" (Then I said, well I know some parents that are getting similar functional language skills worked on through ABA or RDI in home. "We don't pay for that, atleast not anymore, they must have cases that began before that budget cut" "By law we can't pay for social skills groups either. You can use respite hours, but based on J's needs, you will probably get only a fraction of the amount needed, which is usually a 2-3 day/wk minimum." He also expressed surprise that I haven't applied for medicaid or ssi, but I have no clue where to start, which I told him. His advice consisted of giving me a "directory" of services (not free!) that he already gave me at an earlier meeting a month prior. I'm glad we're so memorable

Did you have to hire a lawyer, or was it just given to you? Not that I have any $ to pursue this but who knows? Feeling grumpy!

[Mittsy]

I'm watching this thread closely, we strongly suspect DD(5yo) has either HFA or AS. We're in the very beginning stages of trying to get a dx now.

[LoveMyJonah]

Originally Posted by ericswifey27

I had a meeting last Monday and asked my intake caseworker. I told him I wanted to add goals for building social skills and functional language skills (like greeting me when I come home from work, offering assistance to his brother instead of just ripping a toy from his hands to "fix" it etc. His response was "That is speech therapy, we don't pay for that. You have to get it through your school district or medical insurance" (Then I said, well I know some parents that are getting similar functional language skills worked on through ABA or RDI in home. "We don't pay for that, atleast not anymore, they must have cases that began before that budget cut" "By law we can't pay for social skills groups either. You can use respite hours, but based on J's needs, you will probably get only a fraction of the amount needed, which is usually a 2-3 day/wk minimum." He also expressed surprise that I haven't applied for medicaid or ssi, but I have no clue where to start, which I told him. His advice consisted of giving me a "directory" of services (not free!) that he already gave me at an earlier meeting a month prior. I'm glad we're so memorable

Did you have to hire a lawyer, or was it just given to you? Not that I have any $ to pursue this but who knows? Feeling grumpy!

I am SO sorry you are getting the runaround. I didn't have to hire anyone, I just had to ask and ask and ask and call and call and we got a TON more than I ever thought we would. When they reviewed our case with a behavioral specialist, she just decided to do ABA. I considered getting an advocate for our IEP meetings because his teacher was HORRENDOUS, but his behavioral team really advocated for him, and so did I so he was really fine.

For medicaid, call your county's welfare office and get an application. Read over it carefully. They may need a letter of disability. I got that from his psychologist. We still don't have medicaid only because I haven't gotten all of the materials together yet. Some states are easier than others though.

[jakesmama]

Originally Posted by Mittsy

I'm watching this thread closely, we strongly suspect DD(5yo) has either HFA or AS. We're in the very beginning stages of trying to get a dx now.

That's where were at with 8 yo ds. We have our first appt with the pyschologist on the 28th.