My Autism Insights

I will veer slightly off topic for a moment to say that first I am thankful that President Obama’s inauguration went well!  I’m also thankful that Gus’s school made it possible for the kids to see it.  Gus was excited about it, but his only comment when he got home was that the speech was too long.  That’s valid coming from a seven year old.  My five year old was a bit…disgruntled about having to watch “the bad news” at first, but then became more engaged after I explained, “We have to watch this because it will never, ever happen again. No matter how many African-American presidents we have after President Obama, we’ll never be able to see the first again.”  She seemed to get it!It was an awesome day.

I am thankful that Gus’s behavioral evaluation (evaluation done by a behavioral specialist)  went relatively well, according to his teacher.  He had a good day on Tuesday and didn’t have his rough day until yesterday.  She’ll be back, but at least she’s seen that he can have a good day, and often does.

I am thankful that my buddy Adonya Wong, author of In My Mind, will be here in just a couple of days, stopping for her Virtual Book Tour!  She’ll be discussing a typical day with her son, Nicholas, biomedical interventions she tried and their effectiveness for Nicholas, and other very interesting topics!  Save the date and stop by on Saturday January 24th and see what she has to say about life Through the Eyes of Autism!

And as always, please share your thankfulness below.

A few things to post about today!  We went to DH’s office party yesterday and one of the staff brought his kids: two boys aged 5 and 2.  I was amazed at how well they ALL played together.  Usually, MM is the one to make friends immediately and to dominate any new children’s attention.  I expected that to be the case since the older boy was her age.  So imagine my shock when I saw that Gus was playing with J with all DH’s action figures!

One thing I’ve noticed before is that Gus can get along, and will actually take an interest in other children, just not his peers.  A two year age gap seems to work very well for him, and he loves babies.   It was nice to see.

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On another note, Barbara at Goal for the Green had honored me with the I Love Your Blog award, and I’m finally passing it along.  (I’m starting to run out of blogs!)  I don’t remember exactly what the rules are, but I’m passing the award along to:

Lainie Sips - This is a tea blog that I’ve really grown to love!   I am by no means a tea aficionado, but I do drink tea almost to the exclusion of everything else.  Lainie has really peaked my interest in different teas with her reviews.

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Finally, Tanner’s Dad has organized Autism Healthcare Twitter Day taking place all day today.  President Elect Obama is looking for input from the autism community for healthcare needs.  So if you’re on Twitter, use the hashtag #HHS and please lend your support and input!

I had also received this about a week ago:

“Early next week, the Autistic Self-Advocacy Network (ASAN) has been invited to give input to the Office of the President-elect at two meetings relating to disability policy in the upcoming administration. The first meeting will focus on autism policy issues specifically while the second will focus on health care policy from the disability perspective. The meetings will be small, intimate and include representatives from several other autism and/or disability organizations as well.

I’d like to take this opportunity to invite people to give their thoughts as to what issues matter to them in relation to Autism Policy and Health Care Policy in the upcoming administration. We’ve been asked to take 2-3 policy priorities into the first meeting and will want to represent some of the specific needs of autistic self-advocates in the second. As an organization that seeks to represent the needs of the community of autistic people and to fight for the rights of ourselves, our families and our supporters, we want to hear from you. Please feel free to either reply directly here or by e-mail to me at aneeman@autisticadvocacy.org . I’m looking forward to hearing from you and please distribute.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530″

Even if you aren’t on Twitter, you can make your voice heard.

I was feeling much more thankful before Gus came home and told me that he threw out the $13 thermos that I bought him because he didn’t like the fact that I was sending him water.  Asking to have juice in his thermos was clearly too difficult.  So much for trying to be environmentally friendly.  Anyhoo, thankfulness for today…

1. I am thankful that the thermos that has been allegedly thrown out was only $13 and not $30 because then I may have lost my mind temporarily.  And yes, it’s not out of the realm of possibility that I would have spent that much on a thermos because sometimes I’m silly like that and I forget that we can’t really afford to do that!

2. I am thankful for the head’s up that I got from a friend today.  I’ve been considering trying to find Gus a neurologist closer to home instead of going back to the developmental specialist an hour away.  But it was suggested to me that if I think Gus might at some point benefit from medication, it might be wiser to see a psychiatrist instead.  Not only are they better at managing medication, but they may also (obviously depending on the doctor) have a better handle on other issues that could contribute to behaviors but have nothing to do with Asperger’s.  I think with any medical professional, everything really hinges on the competence of the individual, but why not stack the deck in your favor as much as possible?  Anyway, it’s something to consider that I hadn’t thought of.

3. I’m still thankful for President-Elect Barack Obama!  Do I think he’s some sort of Messiah who’s going to save the world?  Even if I believed in any messiah, no I wouldn’t think that.  But if he doesn’t manage to do anything else in the next four years, right now, he’s given an awful lot of people a much needed morale boost.

What positive thoughts are keeping you going today?

P.S. Nano word count: 11K +

This will be a non-autism related post…sort of.  I’ve just spent the evening watching the first African-American president become elected.  And I feel hopeful.  I feel hopeful that my bi-racial children will now grow up among a different world view, that there is now an image of success at a whole different level than I’d ever imagined.  I feel hopeful that no matter what my son’s differences, it has been proven in a very visceral way for me that the sky is truly the limit for him, for my daughter, for generations to come.

I’m rambling a little because I’m, honestly, floored.   No matter what happens now, beyond political alliance or color of skin, the majority of the people of this nation have stood up and looked beyond difference toward our best hope to achieve the common good.

So in that way, maybe this is a post about autism, about succeeding regardless of difference.  Maybe it is a post about possibility, and vision, and hope.  Yes, we can.  I will look at my son with the renewed belief that yes, he can too.

Ha!  They waited long enough to send it!

Maybe I should just rant about how the clocks changing has really upset our lives instead.  I woke up at 3:45 this morning and had to force myself to stay in bed for at least an hour.  The kids were up by 5.  It’s a very tense day here today.  My husband took today and tomorrow off all because of this historic election, which quite frankly has me nervous as heck.  I think Gus has picked up on this because he is completely off the wall this morning!

We went early to our polling place and did not encounter long lines.  Gus came into the booth with me, turned the little levers, and then pulled the big red lever to cast our vote.  I missed one little initiative that was hiding in the top corner of the ballot, but I didn’t mention this to Gus because he’d just get stressed over it.

The kids did very well in not making loud proclamations about the candidates, and Gus didn’t mention anything about how, “Alaska is going to become independent!” because he heard my husband and I joking that Sarah Palin isn’t setting herself up to run in 2012, but that she was planning on becoming the first president of an independent Alaska.  We always get busted when we don’t watch what we say around this boy.

I was going to post about voting rights for persons under guardianship or with ‘intellectual disabilities,’ but I honestly am too wired to say much on the subject that would be coherent.   I did find it disturbing that there are still 8 states that have provisions to deny people the right to vote based on a disability, and there are a couple who have some really deplorable language on the books at that.  The Americans with Disabilities Act is supposed to protect voting rights for persons with disabilities.  I never thought much about it before now, I mean, Gus is only 7, but I think this is something I’ll be looking at a little more closely and hopefully I’ll have something coherent to say about it soon.

Or lack of policy, more accurately.

Governor Palin gave a speech in Pittsburgh today.  I’m scouring the Internet, but so far have been unable to find video of the speech, but I have found some information , including a transcript of the speech. After reading it, I still don’t see anything new or particularly substantial about her plans, and I find some of her words contradictory to her past actions.

She did mention fully funding IDEA - great, only 11 days before the election and about a year after Senator Obama mentioned his intention to do so.  She talks about school choice for students with special needs, but some states already provide at least some level of choice.  Expanding that would certainly be a nice idea, but with the spending freeze that Senator McCain called for during the debates, where is the funding coming from?  Governor Palin claims that by reallocating funds already in the budget it can be done, but she neglects to give concrete information as to how.

In a Chicago Tribune article, quoted at Autismvox , her plans apparently include boosting early childhood funding until age 3, but what is supposed to happen to those children after age 3?

A couple of other issues are distressing.  First, she claimed that the special education budget in Alaska would have been tripled by 2011, but a big chunk of that funding increase is for a program called the Alaska Youth Challenge Academy, a boot camp for dropouts with behavioral issues.  Autism, Down’s Syndrome, Cerebral Palsy, ADHD…none of these, nor a host of other special needs, are ‘behavioral issues,’ so where is the funding for those students who wouldn’t be served by being in a boot camp?  When given the opportunity to advocate for individuals with special needs in Colorado, she opposed an amendment that would raise funds for those waiting for services - about 12000 people.

Governor Palin got in a dig at the Obama campaign, and her digs have been nothing but misrepresentations and double standards up to this point, by saying that his tax plan would tax trusts that parents establish for their special needs children, which is inaccurate.  As one commenter on the CBS News blog said:

“Sure, any special needs individual who is lucky enough to have a NET EARNING of $250000 per year in INTEREST FROM TRUST FUND will be affected a bit. We are talking about trust funds well above $5.000000 here. How many kids will be affected, I wonder? I”d love to see statistics on that.

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Posted by odnarusalka”Governor Palin fails to mention that the McCain-Palin health plan would allow insurers to deny coverage to those with pre-existing conditions.  Finally, Governor Palin spoke about the fact that children with disabilites grow up and that there needs to be support for them as adults as well.  Yet, she has yet to act on Maria Shriver’s call to Governors to employ disabled adults, and John McCain opposed the Community Choice Act, as mentioned in Becky Blitch’s blog.  So once again, the sound bites sound interesting but there doesn’t seem like there is much in the way of specifics, action, accuracy or truth where the Governor is concerned.  If this was her Hail Mary play, she seems to have just missed the goal.

I think first and foremost, I’m thankful that last night was the last presidential debate.  I’ve had enough of hearing the same thing over and over, and I’m really tired of McCain’s angry sniping.  Anyway, my thankfulness:

1. I’m glad someone FINALLY talked about special needs families and that Obama came out and said he wants to fully fund IDEA.  And for all Sarah Palin’s assertions that she would fight for families with special needs, her state seems to be a bit behind the times in terms of providing support.  Also, I was a bit disturbed that McCain seemed more focused on finding a cause for autism than dealing with the present lack of support for so many individuals.  He mentioned that we shouldn’t just ‘throw more money at the problems with schools.

2. I am thankful for the existence of Roe v. Wade and more than a little offended at McCain’s characterization as people who are pro-choice as being pro-abortion.  I don’t know if there is really anyone who is pro-abortion (and if there are those folks, they are in an incredibly small minority).  I mean get real - no one wants to just go wantonly killing unborn babies.  But there have to be options available when circumstances dictate.  You cannot mandate a person’s body.  And how dare he belittle the health of a mother as a valid concern?!

3. I am thankful that Obama finally mentioned the real cost of health care in response to McCain’s $5000 refund.  That would be great if you could actually get a decent health plan for that much, but according to the National Coalition on Healthcare , the annual premium on a family plan averages around $12,000.  Quite frankly, I don’t have$7 grand to dish out so that my kids can go to the doctor, especially since one of them sees specialists several times a year.  And McCain keeps talking about competition between states - how does that help?  Does he really expect people to travel to other states for health coverage?  Our current health plan is based in another county.  Now, we have decent coverage, but most of the doctors inthe network plan are in the county where the plan is based.  We can go out of network, but the cost is prohibitive.  So, that means I have to travel an hour to go to the doctor.  Guess what - I don’t go to the doctor very often.  My primary doctor is now relatively local, but my husband’s is not.  So when he injured himself and couldn’t drive an hour, that was a problem.  Now, that’s within the same state.  How are people supposed to manage that if they have to travel out of state to receive certain benefits?  And if anyone thinks insurance agencies won’t do that, please guess again.  As it is, we’re traveling an hour to see Gus’s specialist (Pediatric Developmental Specialist) because we, in 2.5 years of living here, haven’t found a local specialist who takes our plan.

4. I am thankful that the debate was not more eventful than it was because I wasn’t tempted to stay up afterward.  I got a decent night’s sleep for a change!  And now that Gus is feeling better, he slept to a good time this morning too, which hopefully means a good day for him.

I hope my views haven’t offended anyone, and I’d love for you to comment withyour own gratitude!  Look at the bright side, in just over 2 weeks, you probably won’t have to read any more about politics from this mom.  Have a great Thursday!

Posting twice today because this is so important.  Borrowed from Celebrity Today!

AP Photo by Charles Dharapak - notice how McCain Still refuses to look at Obama!

My decision was not swayed after watching last night’s debate, but I gained a bit of insight into John McCain that was a bit disturbing.  I am even more concerned than ever about that man getting into the top office of this country for two reasons.

Although the debate was supposed to be about foreign policy, there was no way to avoid at least some discussion of our domestic economy.  When pressed on the issue of what would have to be foregone from his plans in light of the proposed bailout, John McCain’s response was that there should be a freeze on spending except for veterans, the military, and institutions like Medicare.  No mention whatsoever about people with special needs or children or pretty much anyone else in the country in need of support.  One reason this bothers me is that his running mate vowed to make families of people with special needs a priority.  Did McCain not get her memo?

I look at his reaction as having one of two causes.  Either it was an emotional reaction and he didn’t really mean it as drastically as he made it sound, or he totally meant it and never intended to support individuals with special needs in the first place.  Whichever way you look at it, it’s a problem.

Let’s say he was just experiencing a knee-jerk moment - it happens to the best of us under pressure, right?  That doesn’t make it the best way to deal with a situation.  His blanket spending freeze would be akin to me saying to my family, “Okay, we’re spending too much in this house, so going forward, that’s it - no more spending!”

“But Mommy, what about food?”

“Start rationing out those hot dogs and suck it up!”

Not the most practical solution.  And while it’s a big enough mistake for me to have those kids of periodic emotional overreactions with my family, it’s way worse for the leader of a country to not be able to hold himself in check, take a breath, and make a more rational decision.

Now suppose he wasn’t being emotional and overreacting.  I’m not sure if IDEA (Individuals with Disabilities Education Act) funding falls into the same category as Medicare.  If not, without that funding, it will be even harder to get services for our special needs children than it already is.  That’s not looking out for special needs.  That’s kicking us right in the butt.  Clearly this is not an issue of particular value to him.

My other major concern about McCain’s performance last night was the fact that he didn’t look at Senator Obama once during the entire 90 minutes.  As anyone with a child with autism knows, lack of eye contact is one of the first markers in diagnosing the condition, so I know a bit about it after seven years.  Not only did he refuse to make eye contact, he wouldn’t even look in Obama’s direction.  His body language was rude, juvenile, dismissive, angry, and completely inappropriate for someone wanting to lead a nation.   My five year old refuses to look at someone when she’s angry at them.  I would not put her in the president’s office to deal with foreign leaders.  If he can’t bring himself to look at his opponent during a debate, how the heck is he going to conduct himself with other world leaders?  I read a great post the other day about eye contact in public speaking at the Communication Exchange .  I’m curious to see how Patricia reacts to the debate.

So, I am now convinced more than ever that if McCain is elected, support for individuals with special needs is going to dry up despite a promise to the contrary, and the security of the country is going to be even shakier than ever.  But that’s just me.  Maybe I just don’t really understand, like McCain repeatedly tried to convince us Obama doesn’t.  I think McCain’s the one who lacks understanding.  Your thoughts?

    AP Photo by Susan Walsh

I’m not going to turn this into a political blog, but for days now I’ve had something nagging at me, which means the words want to come out.  I will caveat my statements by pointing out that I’m a Democrat and wouldn’t vote for the Republican ticket no matter what.  I am, however, paying attention because if this team happens to win and they are running the country, I’ll be effected as much as the next guy.  And so will my son.  The one with the special needs.

In her convention speech, Governor Palin said, “To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.

I pledge to you that if we are elected, you will have a friend and advocate in the White House.”

I don’t know about that.

I’m not interested in the fact that she’s got a teenage daughter who’s pregnant.  It happens.  I do find it interesting that she wants her daughter’s choice to have this baby to be left alone, and it should be.  I find it commendable and wonderful that Governor Palin chose to have her youngest son knowing that he’d have Down’s Syndrome.  I find it disturbing that while it seems the Palins should be allowed their choices, the rest of the country, including those who do not have the same resources and support that this family does, should be denied a choice.  But I digress…

I am also very skeptical of her vow to be a friend to families of special needs children.  “Oh, but she’s a parent of a child with special needs,” you might say.  So?  Here’s what I don’t get: She went back to work three days after her son was born.  Now maybe it’s not so taxing to run the state of Alaska while still providing children, one with special needs, with all the care they require and deserve.  I’m sure she’s excellent at multi-tasking.  But Alaska isn’t the White House.  Something, in my opinion, would have to give.  Clearly, her career is her priority, and that’s just fine - to each their own.

When Gus was born, I had a career that I loved, and it was taking off nicely.  Even before his diagnosis, I decided that I wanted him (and later my daughter) to be my priority.  So I let one career go and have developed another.  My kids came first.  Now, I’m not saying everyone should have to do the same - I believe in choice - but if the governor’s children, her new baby in particular, aren’t her priority and focus, how can I expect that my child would be any more important to her?

I know plenty of moms with special-needs children who work, by the way.  I think most of the ones I know have either made some adjustments to their careers to be more available for their child (like I did) or would jump at the chance if they could.  It’s not just being at home playing with the child; there is a whole realm of advocacy and constantly being on top of what’s going on in the child’s life that just can’t be done if you’re doing something like running a country. I’m not being anti-feminist, just realistic.

There are other issues I have with Governor Palin that I won’t address here because it’s not the place for them.  I just really wish that the people of this country would look past all the rhetoric and glitz of all these candidates with a critical eye, analyzing not only what they say in their carefully orchestrated speeches but what they do.  Forget what all the news stations are prattling about - stop for a minute and think about what we’re being shown.  Am I way off base on Palin?  I don’t think I am, but I could be wrong.  What are your thoughts?