Neuropsych eval results

[Walking-Iris]

I haven't posted on the special needs forum in quite a long time, but I'm looking for some wisdom from all the great posters here.

 

My oldest ds (10 years old---11 in a few months) was dx'ed when he was 4 with PDD-NOS. Long story short we found an excellent neuro psych evaluation program recently and I got the results today. I talked with her over the phone, but there are more results that I'm waiting for in the mail. 

 

She has changed his diagnosis to Aspergers. She says it fits him more clearly than any other. His cognitive learning and memory and language skills are excellent. No learning disability apparent. He tests average to superior in various tests she gave him for those areas.

 

The main concerns are in social interactions (obviously) :)

And also in executive functioning. 

 

I ordered the book Smart but Scattered.

 

Any and all recommendations, tips, books, etc that anyone here has to help with homeschooling the Aspergers child and specifically to help with executive functioning appreciated.

 

He also has profound motor skill problems. It's extremely difficult for him to play typical childhood games, soccer, running, skipping, riding bikes, baseball etc. He also has some fine motor control issues. His handwriting is excellent, but he does tire quickly when doing any manual tasks and his movements are slow, awkward and labored.

 

He also has food aversions. Most of these issues I have dealt with and researched for years, but now that he is getting older there are some new challenges.

 

His behavior is excellent. He's a calm, peaceful child, very loving. But I would like to look into reward type techniques to help him with tasks, chores, and other situations he is inflexible about.

 

I've read about autism and sensory processing issues, but I need some excellent books or website recommendations for Aspergers specifically.

 

Also the neuro psych mentioned that the Aspie community can be a big help to children as they grow to identify with that identity. Any tips on how to talk with a kid about the Aspie diagnosis? We've talked with him for years about why he went to OT or speech. We basically said that he needed a bit of extra help in some areas than other kids and he just accepted that. But we've never used the "autism" word with him or anything. PDD-NOS sounded so vague and weird to discuss with a kid. I feel somewhat better talking about Aspergers.

 

How did some of you broach that topic with your children? And with their siblings and other family members and friends?

[kbutton]

Our son (9) was diagnosed a couple of months ago. We like this book, and it offers help for telling your child about the diagnosis. http://www.amazon.com/Survival-Autism-Spectrum-Disorders-Parents/dp/1575423855 I think our son has mixed feelings about his diagnosis. Relief that he has an explanation, but frustration that it's always going to be there. We talked about it with our 6 y.o. ds separately from when we spoke to our son with Asperger's, and he was very understanding (he is extremely intuitive and caring by nature). He watches out for his big brother and makes a lot of allowances for him. He's glad to have a name and way to discuss the difficulties he has with his brother. We sat extended family down (grandparents, aunts and uncles, etc.) when we were all together after the kids were in bed--we don't live near any of them, but we wanted them to know anyway. We tell others on a case by case basis, but I've let some children's workers at church know. I will talk about it with adults that don't know my kids, for instance, some of the receptive moms in my homeschooling group (it's for parents, not a co-op).

 

We also like this book: http://www.amazon.com/Growing-Up-Bucket-Full-Happiness/dp/1933916575

 

The Bright Not Broken radio show is available live, archived on the web, and as podcasts. I find it really helpful. It's part of the Coffee Klatch network of special needs radio programs. Many of the other programs on that network address Asperger's from time to time. http://talkingspecialneeds.com/talking-parenting

 

I have no information about support groups. I hear that the focus varies greatly from one group to another.

 

We are working on helping our son learn to speak up respectfully. He's likely to speak up only when totally frustrated, so he comes across disrespectfully. He doesn't really know how/when to ask for help or let someone know what's going on inside his head. I have no tips--just telling you what one of our big struggles is. He's a considerate kid, but consideration means something very different to him than to others, so that's been a social challenge. Anxiety surrounding school performance is a big deal too.

 

 

 

[Jennifer-72]

 

 

Learning the ROPES for Improved Exeuctive Functioning is great for those with HFA and Asperger's. I also love Unstuck and On Target for the flexibility piece.

 

For the motor skills you may want to read up on dyspraxia. A good book is Beating Dsypraxia with Hop, Skip and a Jump. I see you mention he has had OT and Speech, but I would see if you can find a PT to assess him and give you some ideas on how to best help that along. I was reading and discussing an interesting study with our PT the other day about how better motor skills for children with ASD lead to increased social skills development. Motor planning challenges are difficult and require lots of intervention to assure that the child develops a full tool box of skills and a reliable approach to movement.

[Walking-Iris]

Thank you for the recommendations. I have done sensory diet activities from Out of Sync for years, but some of them are beginning to seem a bit babyish to him. We also do some BrainGym movements in the mornings before seat down school work. 

 

The executive functioning was the biggest concern in the evals. Problem solving, planning, organizing. I take pains to organize the books and supplies he needs for school and he still has trouble knowing where things are or how to put it back where it belongs. One example. I keep feeling like there is some magical system out there that I am missing. 

 

It's hard because I have a very strong inner sense of planning and organization. I rarely write dates down, or have to take any pains to organize my projects, it's all "in there" and I can just remember what I have to do or what I want to do. So having to create systems for him has been challenging for me.

 

I don't like the idea of "bribery" rewards for doing things, but I feel that it could be helpful for him to have some external motivation other than a job well done. 

 

I'm going to look at the books suggested. I agree that motor skills will be a big help to him socially. Just in being able to play with other kids in sports or games.

 

He also has a hard time thinking out of the box in school work...analyzing things read, learning and applying various problem solving techniques in math. He learns one formulaic way to do something and if it works he sticks with that every time. 

 

 

[Tokyomarie]

What are you currently doing for gross motor development? Do you live in or near a large city- especially a city with one or more universities? In more urban areas, it is sometimes possible to find adaptive sports programs. Around here- and I haven't paid attention recently, so I'm sure the options have grown some- there was an adaptive soccer team. Some of the martial arts facilities either run programs specifically for students with special needs and/or are familiar enough that they meet needs within the standard classes. Finding some kind of community based adaptive sports or PE program could give your son both physical training and social skills experience geared towards his developmental level.  We used homeschool co-op martial arts and theatrical combat classes to give my son PE experience in a non-competitive environment. Complex motor planning, strength, and endurance were his physical issues and being part of a sport where he was working to improve his own performance w/o holding back a team was helpful. The motor planning and sequencing needed for martial arts was difficult for him when he was younger but the practice was so helpful.

 

Swimming is another physical activity that is excellent for these kids, because of the bilateral, rhythmical nature of the strokes. This requires the brain to communicate across hemispheres and helps develop bilateral integration, which can carry over into other motor tasks.

[Walking-Iris]

Everything you mentioned sounds lovely. Unfortunately I live in an area that worships at the altar of sports competitions and I have heard of zero adaptive anything around here. I'm also pretty rural so logistics it has to be something beyond great to kill a day away from home and work.

 

He is a yellow belt in karate. He lost interest and has taken a break but his little brother wants to do it so I am going to try to get him back in. The instructor was over emphasizing the activity of breaking the boards (the break away practice boards) and because of my ds's fine motor skills he could never break any of them and some other kids started snickering. He is sensitive to other kids reactions to anything he struggles with. Same at co-op, which did have a PE but not anything overly sensitive to those with different needs....basically push up competitions and dodge ball....and a group of highly controlling parents that I wouldn't even begin to question methods with. 

 

I have just heard of a new equine lessons and possibly therapeutic place ---definitely going to check that out.Then we were thinking golf and tennis. Other than that we do most things at home. I'm going to look into possible physical therapy as well.  

[Tokyomarie]

Definitely check to see if therapeutic riding is available. A PT eval would also be a good place to start. Get yourself in with a good pediatric therapist, even if you have to go a bit of a distance to find one who works with kids who have developmental challenges with gross motor skills but are not severely disabled. A PT with this kind of specialty will also know whether there are any adaptive PE type activities.

 

I get you on both the competitive sports worship and the rural living. We are semi-rural, and the adaptive sports activities I mentioned were maybe 45 minutes from home. I wish now that I had made myself find time and space to get my son evaluated by a PT. I have worked as a PT but not for a number of years and I worked with adults. Knowing what I know now, I would make a different decision than I did back then.

[Irishmommy]

Thanks for this thread! It reminded me of some of the books that I had been wanting to read! Hope some of the suggestions help you! You are not alone, I could have written your post!

[Walking-Iris]

Thanks for this thread! It reminded me of some of the books that I had been wanting to read! Hope some of the suggestions help you! You are not alone, I could have written your post!

 

Thanks I'm waiting for some books in the mail...still. I have no idea why Amazon is taking so long. And it seems that there's been a jump in their used book prices.

 

Our neuropsych called a second time. I'm totally impressed. We live far from her and she wanted us to know we're free to call just to talk with her anytime. I told her I ordered the Tony Atwood book and she highly recommended his stuff. 

[OneStepAtATime]

I have started implementing a system with my kids that I read about on-line for an aspie kid.  Mine aren't but they have other issues, especially my older one, with planning, step by step instruction, and my younger one with coordination, etc.  We were having a lot of trouble with chores and getting school work done.  First, I created a checklist of everything that needs to be done each day.  Both of the kids and I have it, the words are in an easy font, the items are categorized and there is a great big check box next to each item.  I started with a really short list and set a reminder on my phone that would go off periodically to remind all of us to check our list for what else needed to be done that day for both school stuff and chores.  It was not by time, but you could do that.  Now that the kids are trained to look at the list, they feel much more in control of their day.  It has helped tremendously with motivation.  They know the day won't continue forever.  They can see, as they check things off, that they are accomplishing things and school and chores will not last the whole day.

 

Second, with regard to chores specifically, I have started an internship program.  I read about this from the parent with the child with Aspergers and it seemed like a great idea.  Each child is assigned a chore for several weeks.  They do not trade off the task, they just focus on that one chore.  The parent demonstrates the chore then helps the child with the chore then eventually lets the child do the chore by themselves but with LOTS of positive reinforcement the entire process, never a negative or naggy word, carefully NOT letting any frustration into your voice.  The chore is taught systematically, and the steps remain the same each time.  Verbalize the steps as they start doing them, then have them verbalize the tasks even if it is just subvocalization, until they know them by heart.  Make it fun, play music, whatever it takes so that it is associated with positive feelings.  After several weeks, once they have truly mastered that chore and can do it without instruction or support from the parent, they "graduate" from their "apprenticeship" and it becomes a task that they do at least once a week so the skill is not lost.  You can print out a certificate for completion of their apprenticeship if they like things like that.  

 

You then start on the next chore skill.  By the time they are adults, these tasks will not be so hard to achieve.  I had read this worked really, really well for another parent.  We started a couple of weeks ago and my son is finally not so fearful of washing and folding towels wrong.  I don't know why but laundry terrified him, even though I did most of the work.  For my daughter it is dishes, but she now feels better about dishes.  I had no idea so much of their reluctance and in some instances almost hostility to these chores was based on insecurity and not really understanding all the steps involved.  They just didn't seem like difficult tasks to me.  Now things are moving so much more smoothly and they don't even question when I say it is time to do these chores.  Still working on a master skill level and that will take a bit of time I guess, but they are so much more positive!

 

I did list, for my own benefit, what my definition of mastery would be but was willing to modify it if it seemed like too high a goal.  Once they get close I will discuss with them what skill level I expect for them to graduate, but in a very positive, excited, glass half full way.  

 

I don't know if any of that will help, but good luck!  I wish you and your family the very best.

[SandyKC]

When we first got our son's diagnoses, he was actually relieved to "belong" to a community.  While in some ways it is difficult for him to feel different, it really was a relief to him to KNOW what to call his difficulties.  With family and friends, they will either be understanding of your son's Asperger's or they won't.. some will say they don't think so, others will say they thought so.  It is a mixed bag as far as people's reactions go.  We've found that there are some people we're open with and others we're not.  It's been interesting to me as my DS got older how he developed his own feelings about when to disclose his LD issues versus when not to.  I think he makes very good choices for his self that way and the majority of people seem more understanding once they know specifics.

 

On the executive functioning, my DS had EF deficits.  We used Lexia's Cross Trainer programs, but there are lots of good programs to help develop those organization, planning, processing, etc. skills.  My son has far fewer problems with EF today and he has learned good organization skills.

[Walking-Iris]

Thanks for that link. Although my ds doesn't have any LDs, he does need help with executive functioning. I'll look through all those resources and see if we can find something that helps. In so many ways it has become easier the older he has become, although I feel that I need to start handing over more of the responsibility for organizing his time and "stuff" to him.