Matthew's Puzzle - Autism Recovery, Gluten Free, Green Living Mom Blog

We started Matthew on a very mild chelator about 3 weeks ago. I was absolutely terrified to try chelation because I heard some stories of bad reactions such as crazy yeast overgrowth and of course the story of the child that died during IV chelation. Even though I knew that the child died because the wrong chelator was used in the wrong manner, and the fact that we weren’t going to be using something so powerful as IV chelation, I was still worried. I mean, he is my baby after all. But Larry and I both knew that our DAN! Doctor has been doing everything he can to help Matthew and that he would not steer us wrong. So we bought the product. It is called Metal-Free by BodyHealth.

The first week Matthew took on squirt/spray orally every day. Thank goodness it tastes like water. Our crazy little boy actually likes it and looks forward to his “spray medicine” every day now. The second week we had to up it to two spays a day. And now we are up to three sprays a day. I think the hardest thing for me is to actually remember to give it to him. Most of his other medicine is given with food, so I have my mealtime routine. The boys get fed and then Matthew gets his meds. Well NOT this medicine. You are supposed to take it on an empty stomach! Exactly how am I supposed to remember that? Now I have to remember to give him his chelator before he eats breakfast, either before lunch or right after ABA therapy, and then either before dinner on at bed time. Next week we will have to increase the dose to four sprays a day. But that will be the holding point, so I think I have a chance.

The great thing about chelating is the fact that Matthew actually does seem to be getting better. The first week we weren’t really sure we were seeing any improvements. But at least we saw no regression, and no sign of yeast building up! So that seemed positive. But by the end of week two we actually started to notice subtle changes in the way he spoke. Larry noticed more direct eye contact, and I realized Matthew was noticing items in his environment more. But the really great thing came from his ABA consultant. She came by last week to work with Matthew and just get a feel for his current program. She is the consultant that develops the program and at times works with him, but we have other therapists that actually run the programs with him. She told me that her time with him was the best session she has had with him to date. She said he was so “on” and that he was probing out of a lot of his new programs. She said he was very much like a regular, neurotypical four year old! Just typing it makes me want to cry.

Metal-Free is different from most chelators because it is a dietary supplement not a typical chelator. The thing our DAN! Doctor told us about it was that it did not put additional strain on the kidneys like normal chelators, so we didn’t need to run the blood work to make sure his kidney functions were normal. If you want to check out Metal-Free go to www.BodyHealth.com

An on-line friend of mine was told that one of her children will be needing some form of play therapy. The child has a speech delay and his therapist feels that he may also be having some issues with how he plays. This child is not on the spectrum, but even so, I can relate. I know what it is like to have a child that requires both speech and occupational/play therapy, in addition to physical therapy and sensory integration. I have been there and I have done that. All of it. Every day. For several years. And I know just how hard it is to watch your child not be able to grasp rudimentary play ideas. After talking with my friend through some messages I realized that I needed to get down on the floor and play with Nico a bit more. I was feeling guilty of not spending enough time with my youngest son. So today we were building blocks and stacking towers, and even doing some puzzles. It was amazing to watch him simply pick up a few blocks and stack them 6 or 7 high, with minimal effort. He just knew how to control his pressure and how to set them just so. He mimicked my words as we put a puzzle together: “Cow, Horse, Sheep” and his little wrists would simply turn so the puzzle piece would find its home. No effort. He simply does. I’ve even witnessed him “cooking” me food on his play stove and how he knows to bring it to mommy, hold it up to my mouth and make lip smacking noises. A child genius I presume. But no, really, he is just a child, like any other child. Well, almost like any other. See, he isn’t at all like Matthew. Matthew could not do those things. And how well I remember having to teach him to play.

I think the incident that sticks in my head more that any other is the day our occupational therapist suggested I start teaching Matthew how to play. She brought me a Playschool Garage and showed me how to play with him. She wanted me to do this every day. I watched how hard it was to engage Matthew in the toy. He really had no interest at all. I felt brave with her there, she seemed so confident and she seemed to be able to elicit the correct responses from Matthew. But the moment she walked out the door and my support was gone I felt very much alone. Alone with a child that couldn’t even “see” the toy garage, let alone play with it. I remember taking my hand and placing it over Matthew’s, and helping him hold one of the cars. I would push the car up and down the ramp, and I would fill it with gas. All the time holding Matthew’s hand in mine. But Matthew’s eyes would be looking somewhere far away, and my appetite for pretend play would soon vanish. How do you teach a child to play?

I commend those people that can do this. Those that don’t get discouraged by a child’s lack of ability or interest. Because I find it to be one of the hardest things I have ever had to do. I like to pride myself in the fact that I could do his other therapies and that he was getting better because of my efforts, but when it came to pretend play I was not up to snuff. It took all my effort to try to work with him. I would conjole him, and bribe him. I would get angry and sad. It was so hard to teach him how to even be interested in play. And all the time I would be hearing how it just couldn’t be that hard to engage my son. He should just love to play. Many people, family and friends, would tell me that what I was doing wasn’t that hard. They had it much harder with their children. Their very normal children. I was disgusted with them and myself. They had no idea what it was like to miss out on normal milestones. Or how many days I cried because my son had no interest in anything normal. I could not engage him, no matter how hard I tried. But try I did. Every day I tried. And with God’s help and some biomedical approaches, Matthew began to react. He began to come out of his fog and he began to show interest in every day play. But it took at least another two years before Matthew really began to do pretend play. So it is truly amazing to watch Nico doing all those things Matthew could not. How bittersweet it all is. And how much easier it is to raise Nico. He can entertain himself. Something Matthew never could do. I could not leave Matthew alone to play while I did other household chores.

I remember talking to other moms about how they could pay their bills or do laundry while their little one played nicely in the other room. And I thought there was something terribly wrong with my mothering skills. I could not leave Matthew alone. He would flap his arm and yell “Ahhh” if left to his own devices. Or he would simply spin the wheels on his toys. Not really engaged in anything. I spent most of my day redirecting his play. Usually to something he had absolutely no interest in and therefore would only persist at for a minute or two, and only with my guidance. Once I stopped directing his play he would be back to the stimming. No wonder I was exhausted, both physically and emotionally.

But we have been blessed with happier days. Today Matthew cooks at his play kitchen, tells us stories he has made up, and pretends to shave like his daddy. He enjoys interacting with Nico and playing with Baby Gunnar, his doll. Today he is a different child. He still has a way to go, but we see clear glimpses of the child he can be, and those glimpses linger longer and longer. This it the child that we will fight to bring to the surface. He works very hard, every day. Both in school and in his at-home ABA sessions. And his dedication is paying off. I love getting voluntary kisses from him, and it melts my heart when he tells me I am his favorite person. Who is this child? Why, he IS Matthew! The real Matthew.

I’ve kind of steered clear of the whole Vaccine Court issue that has arisen in the last few weeks. I really don’t enjoy getting political and the whole thing just makes me sick to my stomach. But I just can’t let this slid. As I’m sure most of you know the US Vaccine Court awarded the family of Hannah Poling compensation for a vaccine injury which aggravated a pre-existing underlying mitochondrial disorder which in turn resulted in her developing Autism. I.E. the Vaccine caused her Autism.

But recently that same Vaccine Court found that vaccines did not cause Autism in three other children. This news was spread wide and far by the CDC, FDA and many newspapers claiming it proves that Vaccines do not cause Autism.

BUT….(if you are even a somewhat frequent reader of my blog you know I love the word *But*. It carries with it so many endless possibilities, and in this case the possibility is great, profound, and vast)

But, those same news-mongers some how neglected to tell you about a young boy named Bailey Banks. You see, that same Vaccine Court, the one that proved Vaccines don’t cause Autism, recently awarded Bailey Banks’ family compensation because “In his conclusion, Special Master Abell ruled that Petitioners had proven that the MMR had directly caused a brain inflammation illness called acute disseminated encephalomyelitis (ADEM) which, in turn, had caused the autism spectrum disorder PDD-NOS in the child”

So Bailey’s autism was directly caused by the MMR vaccine! Did you read what I read? That Special Master Abell said that a vaccine had caused a case of Autism. Wow, that makes two cases of Autism directly linked to a vaccine, yet there is NO PROOF THAT VACCINES CAUSE AUTISM? Really? Apparently Special Master Abell doesn’t agree with that statement. And these two cases, both resulting in Autism, did not take the same exact path. Hannah had a mitochondrial disorder which was aggravated by vaccines while Bailey suffered from vaccine induced brain inflammation which caused his version of Autism. So I’m just taking a leap here, but maybe, just maybe, other kids are getting Autism from one or the other of these issues. And more importantly maybe there are other reactions to the vaccines that have yet to be identified but which also cause autism! Wow, profound thought, no? (yes, I do drip with sarcasm, don’t I? I prefer to refer to it as my acerbic wit, it sounds more polite, don’t you think?)

Anyway, there are now two cases which the Vaccine Court admits that a vaccine has directly caused a child’s Autism. But it is not all sweets and roses for Autism families and the VC. “Jury trials are prohibited. Damages are capped; awards for pain and suffering are strictly limited and punitive damages banned altogether.” Can you believe this is how the US government handles Vaccine Court? No jury trials. Why? Afraid that the public would do the right thing? Or afraid that the public would find out the truth?

Robert F. Kennedy, Jr. wrote a wonderful piece on this very topic and I’d love for you to read all about it. Please take a few minutes to read the following article (link below), then arm yourself with knowledge and love. Let’s all save our children together.

http://news.yahoo.com/s/huffpost/20090225/cm_huffpost/169673