Fix Your Child!

I have got to stop doing this.

Starting out as a comment to a friend's journal entries on Trusera, I ended up writing too many characters to fit in the message box. Instead of deleting 258 characters, I decided to turn it into a blog post. This is the second time this has happened. Mostly, I just end up leaving really long responses. But, today, this ended up having a life of it own.

My friend was reading the latest assessment for her son. She was frightened and angry at the same time. She wanted answers. She wanted quick answers. She knew she wouldn't get them, but in her heart, she wanted them just the same. If someone could have walked up and handed her a prescription that would take all the deficits away, she would have taken it and parted with every earthly possession she owned to get it.

She didn't want to hear "nothing can be done." She didn't want to hear about how autism can be a blessing. And, I responded with my own, similar feeling.

Read on.
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I would NEVER tell anyone that their child should or shouldn't be "fixed." That is not the right word for what you want to do. You want to help your child succeed. They need intervention. It exists and you want them to have it. There are so many ways to help our children. Therapies, tapes, DVDs, our own behavior and drive, etc.- all this can make a difference.

I realize that some people have severely delayed children, who remain non-verbal, wearing diapers into their middle school years. I realize there is a side to autism that is aggressive, violent and even dangerous. They are in a different place than you or I. Where I am, I can see a tunnel. It is a long one, but it has a faint light at the end of it.

When I was told my son needed a special school and would never graduate high school, I dug my heels in and fought. Every night, over and over again. Fought the delays, the stimming, the inattention, all of it. Through what I now know is called modeling, I shaped his responses. Eventually, we could understand each other. Not always, but enough. Once we could understand each other, then the real work began. Over and over, like a broken record, I explained the world to him. How he should stand; how close he could get to people. If he walked out of a room while someone was talking, how it would appear to the other person. How to hug. How to hug tightly. How to kiss his mother good-night. We even formed a ritual around that. We patted them into our cheeks to make sure they couldn't be wiped off. At 16, I still occasionally catch him doing it.

This Saturday, my son will take his first SAT. I don't expect high grades. I expect him to finish. As I type this, his practice test is printing. We will go over it, line by line. He will take the test again next year, his final year in high school. He is on time and on no meds. He has driving assessments, a 2 week career assessment with assistance. He will go away for 4 months next year to live away from family. He is not on the disability they asked me to file for him 11 years ago.

My 2nd son has speech, language and memory delays. We fight the lack of language skills through picture and video vocabulary, mind-mapping software, practice, practice and more practice. Even though his prognosis is more grim, I forge ahead and fight his brain's deficits. I expect more and each day, we, he and I, somehow get it.

This is my rant today and my advice. Don't ever stop fighting to uncover the abilities your child possesses. Whatever level your child functions, don't just accept and be content. You may end up like me; a tired, but triumphant mother of the best two people I know.

Updates, Updates Part 5

Two for one.

I don't often post two times in one day. Even, though I may often have more things to say, I try to keep the posts down to one a day. And, they have gotten shorter and more to the point (I hope!).

But, today, I had two things to say. One was announced in the post below this one. The other is to finally finish a series of posts regarding my family. This post makes Updates, Updates, Part 5. I finally have to talk about myself.

Sometimes, this is very easy. I feel I could talk about myself all day. Not sure you want to hear it, but some days I am so in touch with who and what I am, I could go on and on. Other days, I question my reasons for being, my motives, my ever changing and unenlightening emotions, etc. Basically, some days, I don't know who the heck I am or what the heck is going on.

But in Updates, Updates, I usually focus on the reason each member is a part of this Unique Family. When it comes to me, I am a member, because, well, I was the one who heard the phrase in my head, that fateful morning, when I didn't think I could go on anymore. I heard "You have a Unique Family." And, it was I who had to place myself in the Unique Family first and then bring the rest.

Without sounding too psychological, I had to see myself as part of something unique and wonderful, even when, on the surface, it didn't look that way.

I certainly didn't feel like I wanted to be included. Certainly didn't feel like I would write about it, either. And yet, both of those things happened. So, I will try to write about myself and what I face every day. I have struggled with some limitations from early on and others surfaced as I got older.

For all I can find out, I was born visually and partially hearing impaired.

I didn't find out until I was 37 that I have degenerative myopia. That is a fancy way of saying my vision never stops changing. I usually have to change my glasses every year or so. It is at the point now that I have to use assistive technology to get things done - CCTV, large 22” monitor on my computer, large text and icons, text readers and speech to text synthesizers, etc. There are other items I would like to purchase, like an Optelec Farview. This would help me outside of the house. I still have a driver's license, but I don't drive much, and never on the highway. My life and the lives of others are too precious to me.

I have also learned that my hearing loss is not just about being partially deaf. I have permanent nerve damage in my inner ear, which has caused vertigo to be a permanent part of my life. I had a few episodes of it as a child, but after 2006, it decided to show up every day. There is therapy, and I may try it, but for now, three different meds keep the world from shimmying, and the nausea and migraines at bay.

I have mobility impairments (herniated discs - 5 in all) as well, but most days this is hardly noticeable. After being practically bed-bound for a year, I had back surgery in 2005, that returned me to the land of the walking, but, no hikes, long walks or drives for me. I can drive 20 minutes one way, but the return trip, I will pay for it. Anything longer, someone else is doing it, and even then, I will stiffly get out of the car.

I have an allergy to dust mites that I didn't know about until last year. Due to this allergy being untreated all of my life; I also suffer with multiple chemical sensitivities and a weakened immune system. I am getting stronger (I made it through this whole winter without one cold, flu-like episode or bout of sinusitis! Not even a runny nose!), but I still can have violent reactions to fragrances, everyday cleaning supplies and chemicals, and dust that can halt my activities in a second. I don't need an epipen, but I will always have Benadryl, Zyrtec or Allergan handy.

I continue to battle diabetes through diet (vegetarian/vegan) and herbal supplements, but have had to start taking meds for hypertension.

Since I have been treating my allergy and the inner ear problem, I have not suffered much with bruxism, TMJ or trigeminal neuralgia (TN).

I have survived and overcome Bell’s Palsy, RSD/CRPS, optic neuritis, and a 40% disability in my lower left leg (due to a fractured tibia that went undiagnosed for 3 weeks). I have had seizures, multiple faints and chronic fatigue syndrome-like symptoms since my late 20s.

To look at me, you wouldn’t be able to tell all of that. In fact, if I go back to wearing contact lenses, you won’t even be able to tell I have a vision issue. I am truly a person with invisible disabilities.

If you read the post on "Learning to Be Less Than Perfect," you know that during my childhood, most of this went untreated. As an adult, I didn't really acknowledge my weak state of health even as I was staring disability in the face. I continued to work and ignore my health needs, trying to be stoic like my parents. Even after receiving disability, I continued to try to work; at home and in temp jobs. I only stopped in 2006, after the bout with Bell's Palsy left me shaken, broken and scared. I had to pay attention or no one knew what would happen next.

I thank God, today, for that life-altering experience. I would not be writing today, starting an online business, making the friends I have, if I had not faced one of the most difficult periods of my life.

Here I go again, making a really long post. Sorry.

So, now you know a little about the final member of the Unique Family. The one God chose to bring these stories to you. Perhaps this is one of my purposes in life. I hope it makes a difference in yours.


P.S. While looking for a pic for this post, I came across this quote from The Jungle of Life:

It is not the mountain we conquer but ourselves. - Edmund Hillary

Repost: College Chances Grow for Those with Intellectual Disabilities

This is a repost from Patricia Bauer's blog, Disability News. She has a wonderful blog full of news and tidbits that I usually don't find anywhere else. Even though I am just starting out following disability blogs, I enjoy her approach to the material she reposts. Please visit her blog. Click on the Title for the direct link to the post.

The 16-year old in the Unique Family is getting ready to tackle the SATs and the ACTs. I cannot even believe we are discussing this. There was a time when I held no hopes for college or even a high school diploma. And yet, he is here.

Within her post, she mentions a site that is collecting information on colleges and universities that are making strides in providing transitional services, inclusion and assistance for our children to continue on into college.

For my son, we are going to try to go. I am not sure what that future holds, but the opportunities are there for him, and we intend to take them. I will have more on this as the weeks go by. His first SAT test will be in May and his ACT in June. I am looking into SAT prep for him now.