Kindergarten

I'm not going to blog the thoughts of my heart and mind tonight. They are not pleasant. I'm grieving for the loss of a normal kindergarten for Josh. I'm grieving for the choices I have to make. But I do love this little boy and I always will and I know someday all will be made right. I trust God and that all of this is part of his plan. That is a powerful balm for my grief.

 

Support

Today Josh had swimming lessons at the YMCA with a little friend of his. I'll post something about that later when I have some pictures. After swimming lessons I like to take the kids to McDonald's and since it was raining I decided this would be a good day to let Josh run around in one of those germ-infested play places. I can't tell you how those make me cringe. But Josh was such a good boy, eating his lunch, then telling me he was done and hopping back and forth from foot to foot as if to say, "please, please let me go play over there." So of course I let him go and he had a blast. He was going to have to have a bath when we got home anyway.

After playing for awhile, Josh did something really amazing, something he's never done before. Josh came out of the ginormus play structure and looked around for me. I caught his eye and gave him a smile and a wave. He smiled back, made sure of where I was and then went back to playing. I turned to the other mothers and said, "Did you see that? He checked in with me?" One of my friends smiled and said yes. It may not seem like that big of a deal, but kids with autism often don't "check-in." Even as little babies, they seem lost in their own world. Josh was like this and it's part of the reason his diagnosis was moderate rather than mild autism. I didn't understand this checking-in phenomenon until we had Jane. When she played, she wanted me to play with her. She still brings things to show me and looks to me when she is unsure of something. Josh didn't do this. He could play forever by himself if you let him. In fact if I tried to interact or play with him, sometimes he would get frustrated and shut down. I just thought he was a deep-thinker, a mellow kid. Another name for "checking-in" is social referencing and it's a huge part of how we communicate as human beings. We look at each other, try to read reactions and emotions, seek help. This is a skill that Josh is learning because either he is unable to do it or does not wish to. I can't be sure. But it is a vital skill. I was reminded of this today at lunch.

I invited the mother of the little boy Josh has swim lessons with to come with us. Her little boy goes to Josh's preschool. At McDonald's we ran into two other mothers who have children at the preschool. The moms all sat together while the kids played and swapped stories of our experiences, fears, worries, triumphs. It was great! Having other moms to talk to who are going through similar experiences is such a huge part of this journey. I'm not sure how well I'd be doing if not for good friends who also happen to have children with special needs. I love the support group at Josh's school too. It's such a lifesaver. We don't have a great turnout each month and it makes me sad to think of other mothers who are uncomfortable reaching out through a support group. It's such a benefit to me that I want it for others but everyone has to do things in their own way. I absolutely respect that. Still, I'm grateful for all the support I've gotten in this process. I had a friend tell me the other day, "We moms have to stick together so we can stick it out." I love that. I don't know where it came from or if she made it up but it's so true, whether you have special needs children or not. I think as moms we spend too much time comparing and competing and not enough time patting each other on the back. Motherhood is the hardest job of all and we need all the support we can get.

Our Blue Party was a success tonight and I am looking forward to making it an annual thing every World Autism Awareness Day. I'll post pictures later but right now I am kind of "autismed-out" and exhausted. But seeing how this day and this party helped kick off Autism Awareness month I thought I should post something autism-related. Toys R' Us is doing a special campaign this month to raise money for Autism Speaks, a wonderful advocacy organization. There is a page on their website about the faces of autism with the words of parents. I think it is really beautiful and expresses so many of my feelings. Here's the link. Enjoy!

Whiz Kid

Today Josh went pee pee in the potty for the second time at home. He has also apparently accomplished this feat at least once at school. As I write this, I can only think of the mortification my son will feel someday at this somewhat public revelation. Maybe I will hide this blog from him. I don't want his autism to ever make him feel like a specimen. But these autism stories need to be told.

The reason I bring up the toilet habits of my four-year-old son is because this is something that has been on my mind a lot lately. My son is almost four and a half years old and I'm still changing diapers. I've heard it said to comfort diaper-weary mothers or moms engaged in the struggle of potty-training that "Your child won't go to kindergarten wearing diapers." A sort of, the end is in sight mentality. Well, my child may very well start kindergarten this fall in diapers. Luckily he will be in some kind of program that will allow for that and will assist in my efforts to potty-train him. But every now and then the mere thought of my son starting kindergarten in diapers makes me have one of those moments where I can't breathe because it feels like an invisible hand has grabbed a hold of heart and is squeezing it tightly followed by a vigorous shake for good measure. Once that's over I can breathe again and start over with my life. I know we are going to be able to conquer this potty-training milestone just like we have conquered other delayed milestones, but I have no idea when. That's the tough and slightly comforting part. Josh does things on his own schedule and my job is to support him and be patient until then.

Funny Things

I want to try something new on this blog. I am going to blog about the funny and sweet things Josh does to bless our little family. Even though Josh has autism, he brings a lot of joy to our lives and I want to make sure to convey that part of our story. Josh adores his little sister. Right now they are quite close and I am going to celebrate that for as long as it lasts. Here are two little stories I jotted down in my journal recently.

January 9, 2010
Today Josh wants to play with Jane all the time. She had to go down for a nap but he still wanted to play. After she’d been in her room for a while, he asked me where she was. I told him she was sleeping. He asked me where and I told him she was in her room. I went on my way and a little later I heard the door to her room close. Then I heard both kids laughing. I went upstairs to check on them and found Jane lying down in her crib. The lights were on and Josh was in her crib with her pushing on her chest and telling her, “You gotta wake up. You gotta wake up.” Luckily she was laughing and not upset.

January 13, 2010
Today I heard Josh wake up and come out of his room. I was still pretty tired so I stayed and bed and listened to what he was doing. Earlier this week, Josh woke up and went downstairs. I was barely awake and so I don’t know how long he was down there. When I finally got up and got Jane and went downstairs, I asked the kids what they wanted for breakfast. Josh told me he already had cookies for breakfast. He had climbed up three shelves in the pantry to reach the cookies and there was a definite path of chaos on each shelf as proof of his effort. Besides that he had chocolate remnants all over his mouth. This cracked me up and so today I wanted to see what he would do. This time he went into Jane’s room. He climbed into her crib and snuggled under her blanket. By the time I peeked in the doorway, they were both cracking up and talking to each other. I watched them for a while because it was just so darn cute but then they saw me and we had to start the morning routine. I am so grateful for all the joy and love Josh brings into our home.

Crush

I'm in love with a little boy. I hang on his every word. I understand him better than anyone else does and I can't wait to hear what he will say next. Sometimes he asks me to play "Rock a My Baby" which means I rock him like a baby and sing the song. I love holding him close and remembering the little baby I used to rock. Sometimes he says, "Hold you Mommy" which means he wants me to hold him and I am all too happy to oblige. Sometimes he just wants to sit by me on the couch and watch one of his favorite shows like Sesame Street or Cars. He snuggles up to me with his blanket and his stuffed Lightning McQueen and I ask him if he is cozy. He tells me he is and sometimes shares his blanket with me. Then I ask him for a kiss on my cheek which he dutifully gives. Then my heart melts and I think this snuggly couch moment is one of the best in the whole world. So you see, I really am in love with my little boy.

Autism Treatment Coverage

I received this email today and thought it explained very clearly the benefits of coverage of autism treatments by insurance companies. For those of you in New York state, treating children with autism as soon as possible will save money in the long run and help them grow up to lead productive lives. This is definitely a win-win situation.

The Albany Chapter of the Autism Society of America is proud to announce their endorsement of Senate Bill 6123 and Assembly Bill 688.


Schenectady, NY (November 9, 2009) The Albany Chapter of the Autism Society of America (ASA) proudly endorses Senate Bill 6123 (S6123) and Assembly Bill 688 (A688) since this legislation offers clear and practical solutions that will enable New York families to have equal access to appropriate treatments and services that would be covered by private health insurance if it were not for the diagnosis of an autism spectrum disorder (ASD.) These bills ask insurers to simply update their coverage to reflect the widely held belief in the scientific community that autism is treatable.

The ASA estimates lifetime cost of care for an individual with autism at $3.5 to $4 million; with access to early diagnosis and intervention, these costs can be reduced by two-thirds. Many families cannot afford to give their children the treatments that could help affected individuals reach their fullest potential and enjoy a happy and productive life. ASD results in annual societal costs of $35 billion per year.

Persons with ASD typically require a combination of medical, psychological, psychiatric, physical therapy, occupational therapy, speech therapy, behavioral therapies and other developmentally-based interventions.

Reasons to Support Private Health Insurance Coverage for ASD
ASD is now the number one childhood developmental disability with 1 of every 100 children in the US being diagnosed, making the diagnoses more common than all types of pediatric cancer, AIDS, and diabetes combined. S6123, introduced by Senator Shirley Huntley, and A688, supported by Assembly Member David Koons, would reduce the financial burden on New York families. Families incur significant financial burdens to pay for necessary and appropriate services, sometimes as much as $100,000 a year. In addition to the crushing financial burden placed on families affected by autism, the time, energy, stress and emotional commitment can become absolutely overwhelming and, if left unchecked, can adversely impact employment, health and the marriage. Studies done indicate adding coverage would increase policy premium costs less than 1%. The benefit to New York taxpayers, families and the school system is clear—spend a little now or, spend a lot later. Currently, fifteen other states specifically require insurers to provide coverage for the treatment of autism, thirty-four others have reform measures pending.

Without treatment, the taxpayers of New York will certainly bear the enormous financial burden of a life-time of care for children who live a normal life span and often need round the clock care. In contrast, many children who receive effective, intensive and evidenced-based treatments require less support in school and go on to lead productive lives as taxpayers.

For more information on the ASA’s endorsement please contact Janine Kruiswijk, Executive Director (518) 355-2191 or at jlounsbery@albanyautism.org

About Autism
Autism is a complex brain disorder that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by extreme behavioral challenges. Autism spectrum disorders are diagnosed in one in 100 children in the United States, affecting four times as many boys as girls. The prevalence of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.

About The Autism Society of America - Albany Chapter
The Autism Society of America - Albany Chapter serves people living with Autism in the greater Capital District (12 counties) and their families. Our mission is to promote lifelong access and opportunities for people on the autism spectrum and their families so they can be fully participating, included members of their communities. We do this through advocacy, public awareness, education, compassionate support and research related to autism. Our primary focus is on public awareness, education and compassionate support. To learn more about Autism and the Autism Society of America – Albany Chapter visit www.albanyautism.org