An Amazing Book And A Bit of a Rant/Vent

When we were leaving New York I stopped and did something that I have wanted to do for quite some time. I bought a book. I admit to being a literary junkie for the majority of my life but for some time I have put my passion for literature aside. Well unless you count the endless amount of research I have done into the things that relate to Quinn.

Though this book was bought with Quinn in mind it is one that I have been wanting to purchase for months. It is called My Stroke of Insight and it was written by a Brain Scientist who at the age of 37 had a massive stroke. In the book she recounts the details of her stroke and her recovery (I am only part way through it) and relates it to her experience working with the brain and I am finding it both fascinating and inspiring. It is helping me to understand the way Quinn's brain reacts as a result of the stroke but I am intrigued by her insight into how each of us how the power to challenge our brains and use them in ways that that will help us all life more positive lives.

In the same vein tonight I watched the special with Michael J Fox, whom I was not a fan of until later in life, I have since become a fan of who he is as opposed to his work. So many of the things he said in the beginning of the episode echo exactly how I feel about our situation with Quinn. I taped it for tom who is working tonight and I tell you it was an hour I spent in tears.

The following story was about a group of three children in the UK who have Primordial Dwarfism, and those of you from the Soo likely know about the little girl who lives here who also has it. I was really thrown for a loop when they spoke about how the vessels in the children's brain can change as they get older and develop aneurysms, moya moya and stroke and I kind of went from one extreme to another with the two shows.

Though we want to raise Quinn as normally as we can, as he gets older (and I am not talking about looks) it is becoming more and more obvious and concerning to me that while I love that he is different, I worry about how he is going to find his place in society. Though I know he will I still an concerned and at times very sad.

When we went to the conference in Houston it was exciting and amazing but very very hard for me. I tried to prepare for it but I was not prepared for how different he was from the other kids his own age. He played in the same area as them but there was no interaction with them. It hit me like a ton of bricks. I want so much to be able to involve him with other children but lets face it Quinn does not exactly get any play date requests. He has been on the waiting list for a special needs spot at every daycare in this city that has a preschool program but so far nothing.

The catholic board has a preschool program they run a few days a week but when Ty was in it their were no children with special needs and I don't know if they would be equipped for it but I am going to try. He certainly is not toilet trained and likely will not be for some time, as is very common with Autism.

I am going to be putting him in a music program they he and I will attend together but other than that and what I am doing with him he is going to be totally unprepared for the structure of a classroom. Some may think this is too early to be concerned but I disagree in every way shape and form. I am not going to jump on the bandwagon of people complaining about the government's lack of action for children with Autism because it is not going to change any time soon and I do not want to waste time that is better spent trying to help him.

He has not had any therapy this summer because everyone is on holidays for most of the summer and with his surgeries nobody wanted to overwhelm him.

So while I remain optimistic I am very frustrated. Ironically this comes at a point where I am feeling much better anxiety wise than I have in 3 years.

I think he has been more affected by recent events than everyone realizes. As both his mom and therapist I can tell you that it has been an extreme challenge lately and that he has regressed quite a bit

With the seizures and headaches I get worried. Other times I wonder if he will develop behaviors not uncommon to Autism and then we will be totally confused. God forbid he screamed hours a day like a few children I worked with. Sometimes I want to throw my hands up and say somebody just tell me how to fix this for him, I don't want to change him but I am frustrated that I cannot be sure of his needs sometimes and that someday we might mistake a stroke warning for a behavior due to Autism.

This is not coming from nowhere but has been on my mind for some time but trying to establish a balance of meeting the needs of three children without one feeling left out is not always easy.

Quinn needs appointments galore but I am procrastinating because I am not 100% sure what the reaction will be. I am hoping for a good one and expecting a quiet head nodding.

The other thing I am determined to do is sit down with neurology to have a good discussion about how/when he developed autism. Everyone agrees 100% he did not have it, but developed it because of his brain anatomy. I don't necessarily want to know WHAT caused it but since it is neurological in nature and wasn't always present how do we attempt to "heal his brain" so to speak how do we get those neurons firing that are dormant. They worked before so what do we do to get them going again.

Behavior therapy is not for him, dietary therapy is not for him. If it is neurological there have to be ways of waking up parts of the brain and stimulating those areas. Call me crazy but I choose to believe there is an answer. For one thing I wonder how many toxins are still in his body from the chemo, how has that affected him. We are talking a powerful drug, that yes saved his life but at what other costs. I know what you are wondering and it has been suggested that the chemo might have played an environmental role in triggering the regression and autism development BUT because he was already at high risk from the cerebellum and stroke. For all we know it was Windex or laundry soap.

I hope I don't sound like a raving lunatic but this is the reality of the situation and when I am worried I write about it. I've seen him without Autism, with it and I have seen him recover part of what he lost only to lose much of it again. We are missing something somewhere and if I have to I am going to keep motivating every doctor, specialist,therapist etc until we figure this out. I do not expect a cure but there has to be a better answer and a way to help him that nobody has thought of yet.

Okay, enough of that I feel better now.

I am a little concerned today only because I am unfamiliar with the lipo healing process but today he looks more bruised and his cheek is a bit lumpy. Six months (almost 5) is a long time to wait to see. I'm the kid who searched for my Christmas presents and one year found where my mom kept her Christmas gift list and likely every year after that until one day I told her about 2 years ago.

Now to end, two words that I am wondering if anyone is familiar with, it is common in the stroke community discussions and I have often wondered if it would benefit Quinn but the cost is high. Just a thought, realistic I have no idea but who would have thought Quinn would develop Autism after everything else he went through.

Hyperbaric Oxygen

Its not as crazy as it sounds. Call me crazy but never in a million years did I think Dr Waner would operate on my son. (Who has just woken up again probably after another seizure)

On that note, gotta run. Hopefully he will go back to sleep b/c the last 2 nights the was no sleep to be had for this mom. So blame my ranting/venting desperation on that.