Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.
Saturday, May 23, 2009
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.
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 I remember you as a little boy; withdrawn but yet so adorable.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.
Monday, May 11, 2009
All I want for Christmas...is a Kindle DX.
I have to admit something. I am an procrastinating early adopter. Is that an oxymoron? Well, whatever it is, that identifies me. Let me explain.
I love technology. From the first time, my brother took me on a tour of an IBM plant back in..., well, whatever year that was that computer mainframes took up entire rooms, I have been hooked. Not the programmer, webmaster, system analyst kind of hooked, but the I have gotta have it, figure out how to make my life fit it and it fit my life, kind of hooked.
I spent a lot of time and money getting things first.
And, then I woke up. I was tired of getting things first, only to be a beta tester who paid full price. I was tired of bugs, patches and upgrades. So, I decided that even though every fiber of my being stretched toward buying (or pre-ordering as the case may be) techie stuff first, I would wait.
It is hard. So very hard.
You have to listen to all the people blather on about their iPhones, iPods, netbooks, 17 inch laptops,...do I have to go on?
Well, this is the ONE time that I am SO glad I waited. When the Kindle came out, I watched people pre-order. My little heart sputtered. I wanted one. A line that can only be said with the appropriate pout. But, I stuck by my guns and waited. First generations ALWAYS goes through an upgrade (look what happened with the iPhone!).
I waited. Out came Kindle 2. Then, the controversy started.
Where was the sound? The blind community felt left out. There were petitions and Twitter Blitzes.
I waited some more. By this time, I knew another upgrade was coming. And, here it is.
Was this thing made for me or not?
If you are knew to my blog, you may not know that I have vision issues. I need everything larger. Everything. Another thing you may not know is that I have a book collection bordering around 630 books (the one categorized already) and counting. I LOVE READING. And, I have waited for the day, when I could carry my books around with me in a slip of a device.
I have read some people disparaging the nearly $500 price tag. When I think about the Optelec Farview that I want that costs over $700, I am willing to deal with the price. I will probably use both equally as much.
So, for once, you hear about something Mom wants. Let's hope the rest of the family can afford me!
Friday, May 8, 2009
Today, I received disturbing news from one of the bloggers I follow.
Michael Buckholtz is the blogger for the non-profit organization he founded called Aid For Autistic Children Foundation, Inc. As usual, I stumbled across his blog as I perused the many Twitter posts for autism. As a person who was not diagnosed with his spectrum disorder until grown, he brings a unique perspective to the world of autism and Asperger's. As my son grows into manhood, I appreciate that perspective.
However, Michael is going on a fast to bring awareness to the plight of those families that deal with autism, but who do not have bankrolls (or even houses to mortgage) to pay for their child's care.
He is on a 30-day hunger strike.
I am not here to judge, but I still don't like the idea of having to fast to get the attention of people. I don't know if he is being followed by a doctor to monitor his health as he does this. And, with over 900 friends on his page, some of them doctors, I am appalled at the lack of response.
Does the autism community need hunger strikes? Do we need to get grass-roots and sit-in on some senators or insurance companies to get attention to the needs of our children? Have we really come to that?
Michael thinks so.
Earlier, he asked people to write the publicist he hired in support of his book. I wrote a lengthy email. There was not even an autoresponder from Ms. Barnett.
I want awareness, but I don't want our children or even our adults with autism to have to go to such extremes to get attention. Of course, he is free to do whatever he wants, but I hope by my writing this up in two of my blogs, that people will become aware of his journey.
I know April was Autism Awareness Month, but autism doesn't take a vacation or only show up once a year. It is a disorder that families go bankrupt over, marriages fall apart over, and mother after mother (and plenty of dads!) work from dawn until dusk, caring for their children. There are elderly parents still caring and truly worrying about what happens when they are gone.
I am not sure what I want to ask my readers to do. I do want you to click through to his pages. I do want you to support him. But, most of all, I want to open the dialogue. Is it time for the community of people whose lives are touched by autism to go to more radical ways. Is it time to go past petitions and walks?
What do you think?
Sunday, May 3, 2009
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."