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

SEIT

I want to use this blog to explain some of the great services Josh receives. We receive amazing services in New York State and it has had a huge impact on Josh and our family. We feel so blessed by the miracles Josh's teachers have done and the kindness with which they have done them.

One of the kinds of teachers Josh has is a SEIT teacher. SEIT stands for Special Education Itinerant Teacher. She comes to our house every weekday morning and works with Josh for one hour. She can also do the appointment just about anywhere else. That's the "itinerant" part. Starting in the Fall, Josh's teacher is going to start coming for two hours a day. We plan to do more activities in the community so Josh can learn to interact in social settings and with his peers. Socialization is one of the three key areas with which children with autism struggle. Josh's SEIT teacher works closely with Josh's teachers at the school and a binder goes back and forth to school with him each day with notes on his progress at certain tasks. We are so grateful for Josh's SEIT teacher. We've had several people come into our home to help Josh and every one of them has been wonderful. They've come to be good friends. They love what they are doing and they love the children they work with. They bless the lives of children and families every single day. We would be lost without all of their help, or at least a lot more tired and stressed out.

So here is my soapbox. A lot of kids with autism or other special needs aren't getting the services the need. New York state has very good programs but many other states do not. Cost is the reason most often cited for underfunding these programs. However, there are studies that show that "an early diagnosis followed by proper early intervention can reduce the lifespan costs for treating, servicing and supporting a person with autism by two-thirds."* These lifespan costs are estimated to be 3.2-3.5 million.* If states don't want to help special needs children simply because it is right, then they should do it for savings they could be pocketing. I love it when the moral good and the economic good are the same thing! It makes it easier for people to do the right thing.

*Information taken from The Autism Advocate, Second Edition 2009, Volume 55, No. 2, pg. 4

New Favorite Words

"Want Mommy hold you." or "Mommy hold you please?" This is what Josh says to me when he wants to be held or cuddled. He comes over to me with his thumb in his mouth and his blanket under his arm. This is one smart kid. He has basically discovered the one phrase to which I simply cannot say "no." I love snuggling my kids. I love their sweet baby smells and their soft baby skin. I love that they are quiet and still and that at that moment they need only me. When both kids want me to hold them, well, that is one of the closest things to heaven I know. One day Josh is going to be a big "tough guy" and too much affection from his mother will probably be embarrassing. But for now, every once in awhile, he wants his mommy and he has the ability to express his needs clearly to me. This is a great gift and I am going to try to savor every minute.

Senate Bill 819 - Autism Treatment Acceleration Act of 2009 (ATAA)

All

A group of US Representatives and Senates have introduced a bill to help people with autism. Here is a link to Autism Society of America site where you can read more about the bill as well as send a message to your Representative and Senators.

The Autism Society of America also allows you add your own message to include with your message. I added the following:

As I am sure you know there has been an increase in the case of diagnosed autism and early intervention is critical in improving every autistic child's life.

This last year my son, Joshua, was diagnosed with autism and the impact on my family has been difficult at times. However, the early invention services provided has been an enormous support. Joshua is now able to call my wife and I "mama" and "daddy" which as you know is the happiest words to hear from your child.

I recognize the strains on the current and future federal budgets, and understand the difficult choices you have to make. I also voted for you based on your service to the community, the sacrifice you make in representing us, and your ability to recognize the importance providing the best future for our children. During your deliberations I ask you to think about the improvement that special education services has for autistic and special needs children and defend the budget with your colleagues.

Thank you for you time, and if can be of any service to you please let me know.

I hope that each of you will take the time to be involved in our government and future for all of our children.

Crying from Basketball

As many of you know I am a fairly big sports fan. Megan teases me that the only time I cry is when there is some emotional moment during a sporting event; think Eric "The Eel" Moussambani from Equatorial Guinea finishing last in the 100m freestyle swim, Britain's Derek Redmond tearing his hamstring during the 400m being disqualified because his Dad helped him across the finish line, the Jamaican bobsled team carrying their sled over the finish line after the track cable broke. Needless to say I could go on with examples, these are only Olympic examples off the top of my head. However, I would like to share a couple of videos about Jason McElwain, or J Mac.

The first if from ESPN:

A similar piece aired during the NBA Finals:

J Mac also appears in this Gatorade video with the likes of Michael Jordan, Payton Manning, Mia Hamm, and other sports greats:

Based on my love of sports, in particular team sports, and my weakness for tears during emotional sports moments this obviously touched me. I see Josh's determination and it teaches me to do my best, as J Mac says "The sky is the limit, give it all the effort that you can, catch a dream, and never give up." I know I need to be my best, so that Josh will want to be his best.