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.

Autism Speaks Rose Bowl Walk

Since Megan gave me permission to post on the site I have slacked off in writing. I will do better.

First we want to thank everyone who donated to team "We Love Josh". To say the Lindsay was successful in forming her team and raising money for Autism Speaks does not due justice to what the final result. Lindsay more than double her fund raising goal, team building and to top it all off gave Megan the best birthday present ever. Here are a couple of picture I stole from the participants blog sites.

This is Megan's Dad, Ken. Notice the button on his hat, it has a picture of Josh. Overachiever Lindsay made individual buttons for everyone that walked!

Even the Empire was out supporting Autism Speaks. I imagine there was also Han and Luke were nearby to protect the galaxy.

Here is the group, going across the back is "Elizabeth" aka Berlin, Ryan, Ken, and Brandon; along the front is team president Lindsay, Deborah, and Chelsea + child.

Once again thanks to everyone who helped Lindsay, and more importantly Autism Speaks.

Yes?

Can you imagine not being able to say "yes" or "no" in response to a question? These are two very useful words that up until now Josh has not been able to use successfully. According to my What to Expect The Toddler Years book, children usually learn to say "no" as one of their first words. They also learn to say "no" before they learn to say "yes" because it is easier to enunciate the word "no" than the word "yes." Apparently it is also easier to shake the head back and forth for no than to move the head up and down for yes. Until recently, Josh has done neither. At one point he had over 50 words, none of them being "no" or "yes." So how did he express "no" or "yes?" If we asked him if he wanted something, he would repeat the name of the thing he wanted with a hopeful tone in his voice. The common response to the question, "Do you want a cookie?" was the word cookie said with a big smile and often a laugh. Negative responses often included crying or whining or even ignoring. If we asked Josh if he was ready to come inside after playing, he would respond by crying and wailing.

To teach Josh to say "yes" and "no" his teachers would ask him nonsense questions. For example they would ask him if his teddy bear was a diaper? He would just stare at them in confusion, look at them like they were crazy or ignore them. We also tried asking him if he wanted something he didn't like in order to elicit a negative response. We would offer him a raisin and he would respond by ignoring us or turning his head. Recently things have begun to click into place. His teacher will push him in a swing and then ask if he wants to stop. She models the word "no," which he repeats and then she starts pushing him again. He has been responding more and more often without the prompt. We ask him if he wants to swing and we get an enthusiastic "yes!" Well, it's more like "wes!" because the "y" is hard for him to say. The other day when I picked him up from school, I asked him if he wanted to go get some fries. To my surprise and delight, instead of hearing an enthusiastic "fries?!" in response I was met with a cheery "okay!" I was so pleased and you can be assured that Josh got as many french fries as his little heart desired for lunch,

Beautiful Surprises

Every now and then, I have a moment where I realize just how far we have come in this journey with Josh. Yesterday he was playing quietly by himself (and not bugging Jane who was nearby) when I heard him say, "Want Mommy fix it." Apparently one of the ramps on his toy garage had come loose and Jane was playing with it. All of a sudden it struck me that when we first had Josh evaluated a little over a year ago, he wasn't putting two words together. Now this sentence had just come out of his mouth. He was able to convey what he wanted and I was able to fix it. This was HUGE! I wish I could convey the amount of work that has gone into that sentence. Josh's teachers would get him to use two words by having him repeat phrases like "more crackers" or crackers, please" with something he wanted, like crackers or cookies. Food is a powerful motivator for Josh. (He's like his mom!). Sometimes he would cry and I would think, "Just give it to him!" When he got better at putting two words together, his teachers (and his parents) started demanding three words. like "more crackers please." This seems to be how these early intervention programs work. When a child masters something, it's on to the next thing. Now lest you think we are all cruel taskmasters, Josh gets lots of breaks. We only work on these things at certain times of the day and we always monitor his emotional state. If he seems too tired, or if he is sick, then we go easy on him. And if he gets really frustrated then we've worked out a system where he can show us what he wants.

Josh is really making great progress. Today he asked me, "Go to school today?" He loves school. When we get to his classroom he rushes in and starts playing, often forgetting to take off his coat. He can say all of his teachers' and classmates' names (that's 15 people!) and we are working on greeting each person by name when we first see them. Often autistic children won't wave as babies or say "Hi" and "Bye" when they get older. Josh is learning this skill at the same time as his little sister Jane. The other day I came home from a meeting. Josh popped his head out and said, "Hi Mommy!" I almost died of happiness. To greet me at the appropriate time and call me "mommy" which he didn't do until just before his 3rd birthday, well that was just incredible! He's always catching me off guard. The other day we were watching Sesame Street. He gleefully identified Cookie Monster when he came on screen. They are kindred spirits those two! But then Josh stunned me by saying "Letter of the Day." He knew the presence of Cookie Monster and Prairie Dawn onscreen meant it was time for the Letter of the Day. These things might seem very small and basic but there were dark moments when I worried they would never happen. That's one of the hardest and best parts of this autism thing. You learn to really appreciate every little milestone, things that come naturally to typically-developing children. There's a fair amount of heartbreak when your child can't do what most of his peers can, but when he achieves something he couldn't do before the feeling is tremendous!