The transition to pre-school

I have been counting down the days until my little boy hops on a bus and is whisked away to school. I have to say, I am more than ready for him to go. First, I think he needs to be out and with other children to learn and expand his play skills. Second, it will be a much-needed break in the day from the little man’s wild and unpredictable behaviors. Third, we need down time to spend on our marriage.

I have had people tell me he’s too little to go to school.

This is far from the truth with children with autism. The Birth to Three services have stopped and services need to be continued. Pre-school was the best thing that ever happened to our oldest son, Hunter. He grew and developed into a child with age appropriate speech and fine motor skills.

I can only hope that Tristan grows and thrives as much as his brother. If not for Hunter’s diagnosis, Tristan would never have received the early intervention services. He has come so far in how he learns, how much he has learned. I can see great things for his future in pre-school. We did a trial run for an hour at the school and he did wonderfully. I was happy and relieved. It took a great weight off my chest, knowing that he would enjoy it when he transitioned.

The routine and schedule of pre-school will help ease his fears of new and changing things throughout the day. Hopefully, with time he will be doing so much better on social outings in public. I long for the day that he can eat in public without being overwhelmed and melting down. It will be wonderful to take him to visit more than one relative without resulting in injury or a tearful breakdown.

We know that early is best when it comes with children on the spectrum. Hunter received no early intervention or services until he was over 4 years of age. He has blossomed into a happy, intelligent, social young man. I am so proud of how far he’s come without the services. He gives me hope for all those children who are diagnosed late.

Tristan has come so far in his journey. Going from 5 words to hundreds of words in just over a year. He no longer cries when he’s put in his car seat. He happily grabs his shoes when you say go bye-bye. He enjoys visiting with people when they come to our house. However, he still struggles when we go to visit new places. His anxiety in new settings is palpable. I look forward to having play dates and parties with him some day.

The transition to school went well today. It is a happy time but also a little scary. I put Hunter on that bus just 3 years ago and saw a new child emerge. I know that it will be hard on Tristan, but I will get them both ready and pack him a little lunch and hurry them out the door. I will celebrate the free time while he is gone but probably worry about his feelings and anxiety. I know it’s for the best and great things are to come for him with his journey to school.

Zac Browser

I came across this site while doing some research and I wanted to share it. I haven’t had a lot of time to fully explore it yet, and I imagine I’ll do a review on it in a few weeks, after Logan and I have had time to explore, play, and form an opinion one way or another.

Listed as an internet browser for children with autism, apparently, you can use a Wiimote to explore it. I’m looking forward to trying everything out – first on my own and later with Logan.

Zac Browser

I’d love to hear opinions from people who already have some experience with the site!

Introduction of church

With all the typical things in life that confuse our children on the spectrum, the idea of church, spirituality and religion has always been on bottom of our list of things to do. It’s important to us as a family, but we haven’t introduced church to either of our children.

Now that Hunter is older and had expanded his expressive speech, we are thinking about taking him to church. Recently, a church has announced a nondenominational service that will be geared for children on the autism spectrum.

This is a blessing to us. Our son knows that there is a heaven and that when people die they go there to be with God. We are unsure of his actual level of understanding of the abstract nature of God and heaven.

We were very pleased to hear of the services being started for the children on the spectrum. Social stories, pictures and trained staff to help aid in the transitions and explanations will make it a special experience in a controlled setting.

I am eager to see how he responds and what the program has to offer in the future for our children. The service seems to be well planned out. We spoke to Hunter about church yesterday to see what he thought about the idea.

Surprisingly, his response when asked if he would like to go to church and learn, was “I don’t know what to do”. Followed by “I would like to learn. Can you teach me?” I was very pleased with his thinking and appropriate answer to the question.

We are delighted to be able to have him attend and learn something about God and spirituality. It makes me happy to know that he can choose to attend and ask how to learn about church. I will update on the program and how well it goes with his first experience in church.

Pervasive Developmental disorder

When my son, Hunter, was diagnosed PDD/NOS, I pretty much knew that those words were a curse. By that, I mean, in regards to Title 19 waiver services standards. From what I have learned over the past few years is that PDD/NOS, is that that diagnosis is pretty much equal to Physician Didn’t Decide, which in essence, gets my higher functioning son no waiver services.

I am wondering if the words “high functioning autism” should ever have been invented. They are a curse in my house. Autism is autism. It is a disability, no matter what level or type you have. All children on the spectrum deserve a proper education and in home program to help them grow and flourish to their best abilites. However, until they change the DSMV to include the higher functioning PDD/NOS, Aspergers, and any other autism like traits, these children will continue to be denied the services that they need to become the best they deserve to be as adults.

I am frustrated with the whole broken system we have here in West Virginia, as well as other places in the United States. Who makes these obsurd rules of who needs and doesn’t need services? I would love to have them spend a day with my Hunter and learn that he is often unable to dress or remember to eat without a picture schedule. To me, that is just an example of how his level of functioning is that of any other child with an autism diagnosis. I am dumbfounded at the idea of being “a little bit autistic” vs the autism diagnosis on paper. To me that is like saying you have a little bit of a heart attack to a patient. A litte heart disease or a little cancer, surely doesn’t negate the need for treatment in the appropriate manner. I feel than all autistic children are created equal in terms of levels of service and care they so desperately deserve.

The Fantasy of Help in West Virginia

A few months ago, I applied for Title 19 for my son who was diagnosed with autism by Children’s Hospital in Pittsburgh. After filling out three kinds of paperwork, we were scheduled for an evaluation at Healthways. Having been through the evaluation at Children’s, we were totally prepared to be there for four hours, as we had been at Children’s.

As it happened, my son was having a remarkably good, uncharacteristically good day the day of our appointment. He ran in circles while we waited, sucking on a lollipop (something he had never done before). When we sat down in the evaluator’s office, it was nothing like what I was expecting. There were no toys, nothing indicative of interacting with children at all. I was handed a stack of forms to fill out, questions to answer as our evaluator answered his phone, stepped out of the room, pretty well did everything but interact with our son.

The questionnaires were nothing like the papers I had filled out only months before in Pittsburgh. These questions were ridiculously not applicable to my three year old. Did I think he could be trusted to drive a car? Run errands by himself? When asked about his speech, I couldn’t elaborate that yes, he had functional speech but that it wasn’t where it should be. That he scratched himself until he bled. That doesn’t really count as self-injurious behavior – it’s not hitting himself or me. That if I asked him ‘How are you?’ I got nothing but a stare. I was able to note his rocking, his echolalia, his absolute resistance to eating.

When the evaluator finally attempted to interact with my son – it was very limited. He asked him his colors and body parts – things my son has known for a long time. He asked him to draw a circle – which he kind of did. He clutched the pencil in his fist and scribbled. There was no attempt to talk to him, to have a conversation of any kind. There was no attempt to see if my son would play pretend or point to something. He didn’t even note his lack of eye contact or facial expression. We were done in under an hour.

Oh, but how can I know he didn’t take these things into account, you ask? Because a few weeks later, I get a letter in the mail from Healthways. Not only did they deny my son services but they proceeded to tell me that my son did not present with autism at all. I was livid.

It was about this time that I learned that Pennsylvania had passed Act 62, requiring insurance companies to cover autism therapies. My husband works in Pennsylvania. For us, we didn’t need title 19 anymore. But that didn’t mean I was going to let it go. The very idea that the Healthways evaluator could spend so little time with my son and then override and negate the professionals at Children’s, infuriated me. They don’t live with him – they don’t see him when he’s humming and rocking or scratching his skin to welts.

I wasn’t about to file for a hearing. I wanted nothing more to do with these people at all. What I wanted was to know how this ‘system’ could be so backward, so ignorant. What I wanted was to know that someone was looking out for the children’s best interest. Living in West Virginia, I don’t believe anyone really is.

I did what anyone who is really upset ought to do, but don’t do often enough. I wrote to both our state senators. I did not write them so they could help me get the services my son was denied. What I wanted to know was why it is so difficult to get the help these kids need in our state. Why isn’t more being done? Why is everything bound up in red tape, paperwork, and under qualified individuals who hold your future in their hands and cannot be bothered to leave the cell phone in their pocket. Why is it that no one sees how broken the system is? How can they think that these “Questionnaires” are a good diagnostic tool?

To their credit, both senators did write back asking for permission to look into our situation, which I gladly gave. Unfortunately, Senator Byrd died shortly thereafter. I got a letter yesterday from the department of health and I realize now that the senators did not understand my question. I figure it is very likely the same letter will soon arrive in Senator Rockefeller’s mailbox as well. And they all are missing the point.

Would respite care be nice? Of course it would, but I have a phenomenal family and it isn’t something I need like so many other families in this state. What I want to know is this: why is no one doing anything about our broken system?

Around the time I received my first letter from Senator Byrd, I had started attending the support group that would in a very short time become the Ohio Valley Autism Network. One of the other families I met are in great need of the title 19 program. Both parents work in West Virginia and, as such, they have no coverage for the therapies their boys need. I do not understand how their kids can be denied time and time again. It makes me want to challenge our politicians to spend a day with us and see these kids who everyone is saying they won’t help. Not everyone can afford to plunk down a couple hundred dollars a week for therapies.

There was a bill introduced into the state senate this year that would require insurance companies to provide that coverage but, for the second time, it died a quiet and unannounced death in committee. No one is screaming loud enough that the system is broken. The red tape holding it together is strangling families, sending them into debts they may never be able to fight their way out of. No one has answers for us beyond ‘no’. There is no hope in West Virginia. There is no help in West Virginia. We live in a state that ought to care and doesn’t show it.

If my husband didn’t work in Pennsylvania, I don’t know what we would do. Because he does, we have been able to put our son in Occupational and Speech therapy and he has come such a long way because of it. These children have such potential. Wouldn’t it be better to get them the tools they need to progress, to be able to care for themselves as adults? It is simple mathematics. Is it more cost effective to provide the therapies and assistance when they are children or fund them for the entirety of their adult lives? That’s not to say every autistic child can grow up to live on their own, without assistance, but keeping the services out of reach, keeping help unattainable, may well mean that some that can will never learn how.

I know I’m lucky in my personal position and I thank my lucky stars every single day because of it. Sometimes I even feel a little guilty that I have less of a fight than others do. I want to scream, to make a scene until someone notices what is going on. Until someone with the power to do something about it, does. We can’t be quiet any more. We must become a chorus that cannot be ignored. We need to get mad, to get pro active, to be as loud as we can be until the powers that be can’t ignore us anymore.