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

So it has begun. We have been asked to leave our Pediatrician’s office. They have been telling us for a while that they needed us to have Nico “fully vaccinated” by 18 months old or we would have to leave the practice. I have been delaying the vaccines for several reasons, one being that every time we have an appointment he has been sick. But the other is the fact that I think vaccines may have contributed to Matthew’s autism and I don’t want to take a chance with Nico. I don’t want to say that I completely disagree with vaccines but I do think we are giving “Too Many, Too Soon”. And for us that just isn’t something we feel comfortable doing.

We are not anti-vaccine, so we acquired the split MMR vaccines, that is we have separate vials of Measles, Mumps and Rubella. Each has it’s own expiration date, so we need to work around that, in conjunction with the recommended alternate vaccine schedules that seem to meet our requirements. We looked into both Dr. Sears’ and Dr. Cave’s alternate schedules and came up with something that we felt took the best of all of these and included the expiration dates of our split MMR. With all of this in mind, we ended up having our Measles vaccine pushed out to Nico’s third birthday due to Dr. Cave’s suggestions and the fact that our Rubella has the earliest expiration date. (Dr. Cave suggests that Measles and Rubella be at least one year apart and that Measles and Mumps be 6 months apart, and Mumps and Rubella be 6 months apart.) The doctors in our practice did not approve of this schedule so they called us yesterday (a Saturday) and told us we needed to leave their practice. I can’t say I was surprised but I was mad. I knew their policy so I do intellectually understand why they asked us to leave, but emotionally it made me mad and very sad. We had put so much trust into these doctors. Over the 4 years we have been with them we have talked to them about so many issues and they have helped us take care of our children. But here they are abandoning us when we need the most support. This is not an easy decision and we are not in an easy position. Larry and I often feel we are all alone in our struggle to stop autism and recover Matthew. And now we worry about Nico regressing. It does happen and it is a huge, silent fear of ours.

There are not a lot of doctors out there that can really direct us. There aren’t a lot of agencies that can help you from diagnosis to recovery, soup to nuts, so to speak. You often have to do all the research yourself, make the decisions yourself, find the caregivers yourself and hope you are doing things in the right order; placing emphasis on the right things, and hope that you can still get your child into school without too much pain and anguish. I have seen too many children and their parents that have been vaccine injured to say that vaccines absolutely can not play a role in autism. There are just too many parents out there that have witnessed the change. I believe these parents, so Larry and I make changes and adjustments and hope that we can still do the best for our children. We struggle every day with every decision we make, hoping we are doing the right thing. But we never really know what the right thing is. If you are standing on the sidelines watching, you may believe you have all the answers; that you know the right thing to do. But believe me, when you are playing the game things are so much different. Nothing is as cut and dry as you may thing. No decision is simple and no one seems to have a copy of the playbook.

That leaves us looking for a new doctor. Someone that will respect our decisions and may actually have helpful advice. Armchair coaches and quarterbacks NOT welcome!

Yesterday it snowed, and it got me thinking that this very well may be the first snow Matthew has ever seen. Well, don’t get me wrong, we have had other snow storms since Matthew has been born and we have pointed said snow out to him before. But I really think this is the first time Matthew has actually “seen” the snow itself.

Larry came downstairs yesterday morning and said that it was snowing outside. The boys and I had been busy doing something else so we hadn’t even noticed. But as soon as Matthew heard the word “snow”, he went flying to our glass slider. And he saw. He watched the flakes fall from the sky and he noticed how it was starting to cover our patio. Promptly he asked, “Can I go outside?” So Larry said “yes”. We bundled both kids up, making Nico look quite a bit like Randy from A Christmas Story, and headed outside. Nico just stood around, I’m not really sure he could move in all of his snow clothes. But Matthew ran around delighted to be outside experiencing the snow. He held out his tongue to catch the flakes; something he had seen on a Little Bill episode. But when that didn’t work he tried to lick the snow which had accumulated on Nico’s hood. He even noticed that my hair was getting covered in snow and made me stoop down so he could shake the snow off of me.

Who is this little boy? Where did he come from? Larry and I were just like small children ourselves again. We had always hoped for these moments with our children, back when we were simply pregnant with Matthew. Then autism entered our lives and we weren’t sure we would ever have these experiences with Matthew; Nico, probably, but not Matthew. Then this marvelous thing came a long. They call it “biomedical interventions”, I call it hope and a miracle. And it has been giving us Matthew. He can see, he can comment, he can experience so much more. And the truly remarkable thing is that he can recount that experience with us. He asks questions about it. He shows us that he has taken the experience in and it has become part of him; that he will retain the information and it has begun to shape and mold him.

I’m sitting here with a small, wry smile on my face because I never thought I would be talking about how some seemingly meaningless event, just a blimp on our lifelong calendar, was shaping my son so that he could take in life as we know it. Who needs to think that way? Who needs to consider such mundane, yet extremely powerful, experiences? Parents of autistics do. And I’m sure there are others, maybe families of those with Downs Syndrome, probably others. I don’t know. I am not them. All I know is what our family is experiencing, and what we are becoming.

First snow. It makes the world look clean and pure, and sparkly. For a moment or a day, the world is radiant, and in the eyes of a child it is brilliant. Hello First Snow!

Being the mom of an autistic child can cause one to lose who they really are. That is what has happened to me. If someone were to ask me “What do you do? Who are you? What makes you, you?” I would have to answer that I am the mom of an autistic son. I wouldn’t answer that I was the mom of two boys or Larry’s wife. I was simply Matthew’s mom; the boy with autism and the mom that lived autism.

Thursday night our local chapter of the Autism Society had a meeting discussing “Happiness as a Renewable Resource”. I went. I’m really glad I did, because this meeting opened my eyes to something I had known was there, but was unwilling to admit. It reminded me of a smoker that knows all the reports of how smoking causes cancer, how it smells bad, and that it costs too much. But they still continue to smoke. Then one day, for some of them at least, something clicks and they realize that this is no longer how they wish to spend their lives. Well, that is what happened to me. I have known for a very long time that I haven’t thought of myself as being worthy, of needed care. If I considered doing something for myself I would feel guilty for having fun while Matthew was living with Autism. I had no right to enjoy myself, or to consider myself, because my baby was still autistic. And no matter how often people told me that to take care of my family I needed to take care of myself, no matter how often I was told I was worth it, I just couldn’t commit myself to the idea. Instead I would allow everyone else in the family to enjoy what they wanted to enjoy, and I silently slipped further and further into the abyss. I had lost myself.

I won’t say I was actually depressed, but I was probably pretty close. My emotions were so tied up with Matthew’s daily progress or regression. If Matthew was having a good, “on”, day, then I was happy; I was high. But if he was having a bad day, then I would be sullen, sad, or even worse, I would be angry. Often things were even worse and Matthew would cycle between being “on” and “off” within one day, and my moods would swing with him. It became physically exhausting, the adrenalin highs and lows would drain and sap my energy. I lost interest in most things and I was allowing myself to grow fat and flabby. Food was one of the few things I still enjoyed. I didn’t have the strength to diet and control my weight while struggling with Matthew’s autism and the emotional stain it placed on me.

But this meeting; it brought something back in me. It opened a window and allowed new, fresh light to shine into my mind and my heart. I listened to the other parents talk about their struggles, their fears, how they are lost too. I was one of them. They were like me. I was not alone in my feelings. They could open my eyes. Like Jesus removed the scales from the eyes of the blind man, my eyes were opened too. I listened to the lecturer and her suggestions for how to bring happiness back into my life. She said something very interesting. She said that 50% of our happiness is just innate; the personality we are born with. Another 10% comes from our circumstances, such as having a child with autism or having lost a job. Finally, the last 40% comes from how we choose to be. That is, it can be our decision to be happy, like a habit we can form. I liked that. I have control over at least 40% of my happiness, and probably more than that because I’m pretty sure I’m not 50% unhappy by nature. That was wonderful news. 40% is a lot in the grand scheme of things. And she also gave us suggestions on how to form those new habits. One suggestion was to simply decide on a way you wish to be each day, such as today I will be patient. Interestingly, by simply saying that you will be patient seems to help a person actually be more patient. I could choose to be happy or kind, forgiving or joyful, or any number of things. I tried it and it seems to be working. At least it is helping.

I have also made the decision that I am worth it. I am worth the effort and I need to take care of myself so that I can take care of my family, and so I can be happy. What good am I to them if I am not happy, not present, not actually part of their life? What good am I if I am not living my life too? Not much good at all. I have decided I will get back on my diet (I actually started up again today), and I will start exercising again. I have started to wear makeup again and to try to do my hair. I want to be happy with myself so that I can be happy with my boys and my husband. And it seems to be working. I have lived for hope with Matthew, now I am living with hope for our whole family.