Wednesday, September 29, 2010

Asperger's the new black

Since even mentioning "Asperger's" and the possibility that SR could be diagnosed with it, more than 3 years ago, the diagnosis has become more prevalent. And the following things I will say, are more than likely going to offend some folks, but frankly I have been offended at things said, and comments sent over the past few years. Which is probably the reason I stepped away from blogging for so long. However I think I am to the point where if your comment bothers me, I do not have to publish it, or if I do publish it I can ignore it.

We have made progress, SR no longer has obsessive behaviors that rule the home, as he did when 12 months to 3 years of age. These are resolved. SR no longer needs all clothes stripped free of tags. SR has not had to leave a public restaurant because of noise for 3 years. In fact he sang in a microphone in a very loud pub downtown, with a band, and sat through many practices in a small studio with children that played horribly. SR no longer hand flaps as a primary stimming activity, most of the time he does not need a stimming activity. Now he will hum once in a while, repeat a catch phrase for a much shorter time, hop, and rarely flaps. I no longer have to warn him every single time we transition from one thing to the next. He can ride a bike, tie his shoes...both which were hard for him. He does not need reminders for simple activities of daily living.

That is a list most folks do not have to make, or think could be solved with better parenting, or early intervention. SR worked hard to get past all of these things, along with DH and I, who tried to provide him with a sensory diet, and exposure to new experiences etc. Trying to figure out the way to our child. A map to his heart if you will. SR gets most credit for doing things that made him uncomfortable, which is really courageous.

The problem with getting him "diagnosed" as I see it, I am not sure what benefit he will see from it. There is no cure. People are lazy and like taking the shortest way on the map to him, even if it ends in disaster. Part of the reason we are having to look at a real diagnosis now, there is a huge gap between SR and his peers. Academically, he is sound, philosophically he has big questions, and tries to answer them and rethink them. Emotionally, he is quite immature, he hits hyperarrousal quickly on days when he is being pushed to frustration. This is happening a lot this year. Simple things like taking a break, some deep breaths, a walk away will help when implemented. He does frustrate easily, and I am guessing this is partially because academics has always come easy for him, and he is not used to working hard. Hard work or challenging work intrests him, but there is a is not always there, some days it is short, other days it is not noticable . In good news he can TELL us when he is done. He has no problem telling folks, I am overwhelmed right now. People are not listening as good as they should be.

In this day and age there is more material on teaching children with Aspberger's than there is regular children.

So now I am struggling with this...ok we might have a diagnosis now what? It only helps if people know what to do. I am one of those that is going to say his diagnosis is more for those outside of the home than for him at this point.

Prayers again if you will we are headed for a testing session tomorrow.


Fermina Daza said...

You always have my prayers but I will say a special one for tomorrow - that you get some answers sooner, rather than later.

You are right to look at this diagnosis as something for those outside of your home instead of something for your family. SR is SR and no label will change who he is or how you love him. Hopefully it will give others some insight into the wonderful boy you already know. And hopefully it will give you even more leverage with which to advocate for him and get him what he deserves.

He is blessed to have you in his corner.

Um Dayo said...

My little brother, who is 10 now, was diagnosed with autism at around 4 I think. He is very high-functioning, to the point they actually assumed aspergers at first. When my mom changed his diet (like you have) and started to implement the stress-relieving steps you have discussed, he really started to get better. He goes to a school especially for children with autism spectrum disorders, so this helps him immensely. Otherwise, my mother would have home-schooled him to prevent the problems he had in regular school before.

May God make things easy for you, diagnosis or no diagnosis. You know what is best for your son ultimately.

Anonymous said...

AWTM, please don't publish this comment. I just wanted to send you a note of -- hopefully? -- encouragement, and I don't intend for it to be public but I don't have another way to send it.

While I always feel a little weird writing to someone who's basically a stranger, I've followed your blog for so long (and even commented here before) that I just can't help feeling like I know you a little. Not, KNOW-you-know-you, know. You've been so real and so honest with your writing that it's sort of a window into your life. (The Internet is a strange creature, isn't it?) Again, I'm not assuming any kind of friendship with you by reading or by sending this note, and I do not expect any sort of response, but I simply must say that I admire you greatly.

This isn't empty flattery. I can't begin to imagine what a challenge all of this is for you and your family. I don't have kids yet myself, though you and I are roughly the same age (I'm 37), and I am always keen to learn from good moms in the event that my hubby and I are blessed with a family someday. Whether or not you think you have anything to teach, I have learned MUCH from you, and I am grateful.

Your family is beautiful and gifted, and your children are blessed because you are raising them with the kind of purposeful love and faithfulness that God honors. He knows your joys and your frustrations, and he knows SR's as well.

Kids like SR are a reminder to me of who God is, of His creativity and His mystery, of His beauty.

Your little man will grow up to be a great man of character (and who knows what other wonderful things!), because you and your DH and little PN love him and cheer him on. He already knows the value of hard work and perseverance and commitment because that is what you have shown him, and that is what he is already engaged in.

It would be freaky-stalkerish of me to say that I pray for you daily...and untrue, frankly. But I do pray for you when I read your posts, and you can bet I'll say a prayer for your appointment tomorrow. May our great God give you wisdom and peace and patience as you navigate "the system." May He give the folks SR has to deal with in his day-to-day life a special measure of insight into his needs, and a willingness to go out of their way to meet them. And may He continue to bless all of you with the great joy inherent in loving Him and loving each other.

Hang in there. I hope tomorrow goes well.

Jenny in Los Angeles

Karen Bunyk said...

Ditto with what you said and Homefront re-iterated about a diagnosis being more for those outside your home.

Think of the diagnosis as a tool you can use. It can help you fight for additional resources (eg social skills classes), funding to enable additional resources and, especially, credence.

Once you have an actual written diagnosis, the school system can't simply write you off as "one of those parents". You have a professional's perspective on your child's issues. The label isn't what's important; rather, it's the back up you need to advocate for your child.

As I said in one of your previous post's, my child was diagnosed about 7 years ago, before Asperbergers became widely known. I waffled on whether to show a copy of the diagnosis to his school, as I didn't want him labelled. In the end, I gave them a copy. And, as it turned out, his school was terrific and took a real interest in doing what they could to make him more comfortable and help him move forward.

Good luck!

Ivy said...

He is so blessed to have you as his mom. You are scrappy, and he is worth the fight. Go Mom!

Anna said...

You are an amazing mom and we can only imagine how tough this has been for all of you. Each child is different whether they have a diagnosis or are considered "normal" and only you and your family can find what works for all of you.

Many prayers and virtual hugs to you and yours.