My "Why"

Why do you do what you do? Why do you go to work every day, or not? What motivates you to do the things you do in life? These influences and your intended results are your "why".

These two are my "why".

As I am sitting here listening to the very loud sounds in my house - the older one is burp-singing in the shower, the younger one is talking incessantly and eating a peanut butter coated apple, the phone is ringing, the voice caller i.d. says another telemarketer wants to sell me something, and the dogs are licking my legs - the tension running up the back of my neck is making me begin to question why they are my "why".

In our daily activities, it is easy to get frustrated.  We all do.  I get frustrated when it takes Ian forty-five minutes to take a shower because he spends the first twenty minutes trying to get the water temperature right and then forgets to get in. I get frustrated from 4:45 until 9:30 p.m., which is when Ainsley talks non-stop. Every. Single. Day. The later it gets the higher her pitch goes and the deeper it drives a tension nail into my temple. I get frustrated when my children are so tired or unfocused that I have to give them step-by-step instructions on how to brush their teeth. I get frustrated when my husband and son are in a department store and are arguing so loudly that everyone in the three adjacent departments hears my son say, "I didn't pick my nose. I had an itch!"

But it could be worse. Much worse. And it isn't.

I used to think I was saving money for their college. In the traditional sense, higher education is becoming highly over-rated and I am not impressed with what it has to offer. It is a mold that we force people into, whether they fit or not. Then we try to hold them accountable for poor performance at something that doesn't meet their needs.

My goal for the fabulous duo has changed in recent months.  They are differently-abled. Traditional ways of doing just about everything don't work for them. Yet, they are capable of doing incredibly creative things, and both are very bright. One day they will each do something to change the world for the better. For certain, neither of them will take a traditional route to reach their own goals. It just isn't in the cards.

Rather than planning for the day my children leave home for college, I am preparing for a lifetime of having them with me, if that is what they need. It is certainly my intent that they be able to take care of themselves. Mamma WILL going on vacation without them once in a while. It would be nice if my parents can still come stay with them. Hopefully, when my dad is 90 that won't be necessary. Still, it's nice to have options, just in case.

I want these two beautiful lives to be able to take whatever varied course lies ahead of them, without having to conform to the expected order of events. When I brought them into this world, I was under the impression that they came with an eighteen year contract. After that, I would be free and clear and able to "par-tay like it's 1999".

Something tells me that ten years from now, they will still spend every night before bedtime reading Garfield comic books together on Ian's bed. Ainsley will still want my mom to sleep next to her when she visits. Ian will still be playing video games (or whatever has evolved by then) with my husband for way too many hours at a time. (It would be nice if that activity could involve total body movement and a little cardio instead of sitting in a chair using only fingers to play the games. Wii isn't cutting it in the exercise department. Just sayin'.)

Whatever it is that happens, I don't want them to be stuck in jobs they don't particularly enjoy or doing things that fail to connect them in some way to the world around them. I do want them to experience joy every single day. Meaning. Purpose. Fulfillment. To know their own "why", and to let it drive them to the pinnacle.

Why Don't Aspies Play?

As I walked home from school with my 8 year-old daughter today, I noticed many of the neighborhood children enjoying the sunny afternoon and playing with friends outside.  Some rode their bikes, others walked to the park. A few were walking leisurely home and talking. It's the same scene when I bring Ian home from middle school.

Instead of thinking about how nice it is to live in a neighborhood where the kids can still ride bikes and run through the yards playing games, it made me sad.  My children don't do those things that I enjoyed when I was their age. Most of the time, they prefer to come home to quiet, video games, homework (ok, they don't prefer that, but it's part of the schedule), and spending time with each other. Even if someone asked them to go for a bike ride they wouldn't, because they are both too embarrassed that they still need training wheels to keep their balance.

There are a few select kids who will venture forth to enter the worlds of Ian and Ainsley.  Often, that is one world. They have always been close, each others' favorite playmate and best friend.  They know each other like the backs of their own hands, almost as much as twins would.  Outsiders learn quickly that they prefer to be a package deal. They are most comfortable when they are together.

I wonder . . . is that enough for them?  Do they ever feel lonely? I worry about Ian, especially, because right now he really has only one good friend from school.  There are boys from our Lego club who he enjoys playing with a few times a month.  Is that enough?  Ainsley socializes a little more at school, but not much. She knows everyone, but when it comes down to true friends even she really has only one.

Does it bother them that they don't ride bikes and run through the neighborhood? Do they even want to have friends? Are the rules of social interaction so complicated that they would just prefer not to bother at all? If I ask these questions out loud, will it open the floodgates of self-pity for them?

Are they happy?

I think Ainsley is, but I'm not always sure about Ian.  He's a tough egg to crack.

There are times when he knows a situation calls for a smile, and I can watch as his brain slowly sends the message to the corners of his mouth to turn upward. These contrived faces are obvious to me because his eyes don't reflect what the rest of his face is indicating.  At least he knows when to fake it. Other people are not always aware of how difficult it is for him to read unfamiliar situations. Does this make other children less interested in being his friend? Is it just too hard to be his friend that no one wants to make the effort?

Every morning when we part company at school, he says good-bye to me at least 4 times with and I-love-you in the middle. There is no emotion on his face, only words.  We regularly cause the carpool line to be backed up into the street because of our tradition that has been going on for over 6 years. I love those moments, and at the same time it tears at my heart to say good-bye that way.

As I look at the clock and see that it isn't long until I'll pick him up from school, I am looking forward to seeing his genuine smile, the one that lets me know how glad he is to see me. I've missed him today. Maybe we'll work on some friendships this afternoon ... if they want to.

Here's How to Help Your Child

This information was forwarded to me by Liz Ditz, whose blog can be found at: http://lizditz.typepad.com .

If you have ever wanted to make a big impact on behalf of your autistic child, this is your chance.



Government Agency Seeking Public Input

Please feel free to forward this to any person you think would be interested.

More information at: http://neurodiversity.com/weblog/article/171/

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On September 15, 2008, members of the Services Subcommittee will meet to review all public comments submitted to date, and will present these comments at the next meeting of the full Interagency Autism Coordinating Committee, which is scheduled for November 21, 2008. Members of the public are invited to participate in the September 15 Services Subcommittee meeting by conference call; for more information, please consult the public notice posted on the U.S. Government Printing Office website.

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Request for Information: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders
Notice Number: NOT-MH-08-016

Key Dates

Release Date: August 11, 2008
Response Date: September 19, 2008
Issued by: National Institute of Mental Health (NIMH)

Description

The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.

Background

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and, among other duties, requires that the IACC develop a strategic plan for ASD research. The IACC includes both members who are active in the area of ASD research funding, services, or advocacy, including several members who have family members with ASD, and one member with ASD. In March of 2008 the IACC established the Services Subcommittee, to assess and improve services and supports for people with ASD and their families. A previous IACC developed an ASD Services Roadmap, which is available on the IACC Website above. This RFI is a next step to obtain updated information about present and future services and supports to individuals with ASD, and their families across the lifespan.

Information Requested

The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.
Responses

Please send responses to iaccservices@mail.nih.gov no later than September 19, 2008. Please limit your response to one page and mark with this RFI identifier, NOT-MH-08-016, in the subject line. The responses received through this RFI will be collated, summarized, and provided to the IACC Services Subcommittee and the public. Any proprietary information should be so marked. The collected information will be analyzed and may appear in reports. Although the IACC Services Subcommittee will try to protect against the release of identifying information there is no guarantee of confidentiality.

A summary of the results obtained from the responses to this RFI will be available to the public on the IACC Website.

Inquiries

Inquiries regarding this notice may be directed to:

Azik Schwechter, Ph.D.
Office of Autism Research Coordination
National Institute of Mental Health
6001 Executive Boulevard, Room 8203, MSC 9669
Bethesda, MD 20892-9669
Telephone: (301) 443-7613
FAX: (301) 480-4415
Email: schwechtera@mailnih.gov