Dear Kid Saturday-May 23, 2009

Dear Kid Saturdays at Cutest Kid Ever

I have to admit, I have not been consistent with writing a letter to my kids every Saturday. I guess I tend to tell them everything! That may not sound good, but I learned early to rely on auditory lessons with my kids than text based lessons. Probably you will read more of these than they will, but who knows? One day they may look back and view this blog, and see what Mom was thinking about at this time. So, here is my Dear Kids Saturday note for May 23, 2009.

Dear Son,

This month has been a bit of a whirlwind. We started off with SATs, signed up for summer employment and now, we are studying the MVA driving manual together. If I didn't realize it before, the last 30 days should really convince me that you are growing up. We are talking about your high school graduation next year. We are discussing going to see your biological dad in Georgia for the summer. We are talking about letting you stay in the house for four days by yourself, while we take your younger brother to his dysautonomia support group conference.

Are we really having these conversations?

I don't want to drag out the pictures, but I remember so many stops along the way during these last 16, soon to be 17 years. I remember you as a little boy; withdrawn but yet so adorable. I remember your grandfather and grandmother holding you and saying a prayer over you like you were the chosen one. Their first grandson that neither one would live to see grow up. How they doted on you for those precious three years they had with you.

I remember the inquisitional first Student Support Meeting when I was told you would never finish high school. I never told you that story until you were in high school. Now, you repeat the story every time you get your report card and remind me how wrong even the best intentioned humans can be. I remember teaching you so many things: the meaning of zero, how to hid your fidgety hands, how to stand still when people talked (though rocking was allowed!), how to shake hands firmly while at least glancing at people's eyes; so many subtle little things that make people not believe me when I say you have autism and a speech and language disorder.

I remember the decisions we have made together, you and I. How you have so sweetly become the "little man" of the house. You have your grandfather's gentle spirit in the lean, tall body of your father. The combination is pure joy to my heart. It is like having the best of both people here with me every day.

I realize driving is scary. I know you aren't sure what you want to do for the rest of your life. I know change is hard for you. Even as we speak of next year and its graduation, college visits and four months stay at the DORS campus, I see the tension in your shoulders.

I am not worried. You have made it this far. Farther than anyone in that little elementary school in suburban Queens, NY thought you would go. I know you will succeed.

Guess what, though? It is okay to be a little afraid of the change. I am, too. We will make it.

SAT and Beyond

I am sure to my son, it felt like Death. For me, I felt helpless at first, and then, determined, once again.

I won't know the grades for some time, but I just wanted to post that we both survived the SAT this weekend. We arrived 20 minutes early (I hate to be late!) and sat in our car to talk over any last minute things. My son never understands those talks. He always wonders why I give them. Somehow, the nervousness escapes him. He knows he has a big test in front of him, but that is no reason to talk about it 15 minutes before he has to go through the door. *Sigh* There are still days that I don't think I reach him. Days that he is still so distant and far away.

We stood in line. There were only a few other parents there. I went up front at one point to ask about his extended time, and was brusquely told that he was not on the list! What!?!

As I numbly walked back to where he was, I debated on whether to scoop him up and whisk him back home just out of protest. This was always our life. Mix-ups and promises that weren't fulfilled. Why did my son always have to do things the hard way? And, why did I always have to double-, triple-check EVERYTHING and EVERYBODY!?!

As usual, he sensed there was something wrong. How uncanny that he has this ability! For a child who is supposed to NOT know how others feel or sense the outside world, he can always sense my moods; my tenseness, my joy, even my tiredness.

"What's wrong, Mom?" he asked, in his lovely monotone.

"They are not giving you extended time. You will be doing the test with everyone else. That was not the way it was supposed to be!" I answered sharply.

"Well, I will just have to work faster," he replied, nonchalantly.

When did my little boy grow up to be so unflappable? You know, I can't remember the last time he had a meltdown. Challenges, changes and rearranges come, and he just adapts. Who is this young man next to me, sprouting a mustache and goatee?

I watched him go into the hallway with the other kids. I couldn't go with him. He walked down without a backwards glance. I choked back a sob. Goodness! It is hard to let your children grow up!

He took no snack. He told me, he could make it without it. Yet, when I picked him up, he looked tired and hungry. I admonished him again about the lunch I packed. He countered that he thought it was for me. We went through our usual dance of words, where I explained, why would I want a lunch, if I was going back home? Again, we came to the conclusion that he had not understood. I wondered my usual thoughts of how much more would he misunderstand in this world.

I asked him how he thought he did. He say "poorly on the math." I bit my lip. I knew the math was not his strong point. Unlike so many other Aspies, my son struggles with math and science, and loves English and reading, despite his mix-ups with semantics. With Math being 50% of the SAT grade, I knew this was not going to go well. And, with no extended time...

As calmly as I could, I told him that this was exactly what I wanted. As he stared at me with widening, incredulous eyes, I spoke the words he has heard from me so many times before for so many years.

"Now, we know where to start working."

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.
o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-

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.

Asperger's and the SAT/ACT Test

How I got here, I don't even know.

From a child that rocked and flapped and disappeared into his own world to a junior in high school, who is facing the stiffest tests in any young person's life. Don't ask me how I got here. One day at a time doesn't seem to do it justice. And I haven't gone crazy and neither has he. Don't say there aren't miracles.

I don't know any numbers and I am too tired to do the research, but how many children with Asperger's take their SATs or the ACTs? I am not talking about gifted Aspies. I am the mother of the run-of-the-mill child with average intelligence according to all the tests he's taken, but with definite below-average verbal skills. I won't parade the numbers in front of you, but he was diagnosed with Receptive/Expressive Speech Disorder since he was in elementary school. His recent testing put his reading comprehension age around 8 years old. And yet, his word recognition age is around 21 years old. Should he even attempt the SAT with a vacillating scores like that? He is pulling a C in Math and we have struggled to keep those grades in the high C range. It just seemed too far out there.

I know this is a side topic, but he is always talking outside the box,
creating new words and positively amazing us all with his quirky insights.I have talked/tweeted with other mothers who tell me great stories. I still remember a child grunting, whistling and humming.but now, he loves to create words that aren't in the dictionary (he knows this, because he loves to read the dictionary!). One word that family and friends have adopted is "linner." Linner is the comparative word for brunch. Brunch = breakfast and lunch. Linner = lunch and dinner. Linner is like a very late brunch or early supper. I told him people used to use the word supper, but he just replied, No, Mom, that word is used just like dinner now, so we need a new word." Can't argue with that one, so we use linner.

Well, back to the topic at hand; here we are in his junior year, and everyone is talking college. "College!?! What!!?!!," as I gasp and sputter. Yes, the school and this crazy program I signed him up for (since we don't get therapy at all, I sign him up for every free program I can get my hands on. He has been in AVID, Education Talent Search,etc) are sending home reams of paper and thick, glossy books entitled "The 411 on College."

I signed him up for the SAT. Then I took a look at the SAT. Kinda backwards, I know, but a lot is going on in our house lately. It hit me real hard: there is an essay requirement on the SAT. ESSAY. 8 yr. old comprehension. Okay, that's not good.

I did make a half-hearted attempt to search the library and online for help, but quickly realized that this test was just not going to happen.The study guides were thick, newsprint looking monstrosities. The tapes had suspiciously vanished. Dead end. Then, I headed online. YouTube (which, by the way, my son loves at the moment) had videos, but I couldn't get into any of them. Maybe I am wrong, and if someone finds a great one, let me know. Nothing moved me at all. It didn't look like this was going to happen. At least, not by May 13th (remember, like a dope, I scheduled before the due diligence)

My son has become very resilient over the years. We have no more meltdowns, we have no more stiff as a board "honey, are you there?" episodes. But, remembering my SAT almost through me into a panic and I remember scoring very high. I just couldn't do this to him. So, I decided that he would take the ACT. What is the difference?

SATs test critical thinking, logic and reasoning, where the ACT focuses more on what have you learned scholastically. I don't think I need to tell you that they really don't want my son to draw conclusions or make critical thinking analyses. They would never believe their eyes. The kind of leaps and connections he makes here at home are out of this world. But, still the problem was preparation. Even with a total multiple choice test with no essay, he needed prep.

And then, I found it. E-Prep. I fell in love. Here was a site that looked like it was MADE for us. Video run instruction. The ability to stop videos at any time. An entire prep course in video, showing, not just telling. I am in love.

I don't do reviews very often, and this is not really one either. Check the site out, but this is the answer for BOTH my children. For the oldest, who has a fantastic memory, he will quickly remember the video instructions. For my young son, who has a damaged memory system, the moving visuals that can be repeated are perfect in order to increase retention and recall. Unlike static words or audio, videos always seem to ease learning and remembering for him.

The downside? Yes, there is one. The course is not free. But they do give options that run from $69.00 to $249.00. Somehow, some way, I will scrounge up the money for one of the courses in the middle. Hopefully, it will be enough to give him a good grade. And, then we can start discussing what he would like to study and what he would like to be.

Now, that folks, is a WHOLE other post. Must tell you about the fun we are having getting him to volunteer and find a job.

Until next time, take care.

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.