Saturday, September 27, 2008
There is often a rainbow when the sun appears after a great storm. Not always a big, full arc shining colors rainbow, but pleasant to look at nonetheless. Sometimes I am angry at my role in life, other times sad, but always grateful in some way for the incredible lessons I am learning, mostly about how to love.
I was so mad at myself on Wednesday for missing the Oprah show which had Jenny McCarthy on talking about her newest book on being a mother to a child with Autism. I caught the tail end of the show, and heard Jim Carrey (who knew he was such and introspective, deep thinker!) say something I think is great. He was talking about how hard it was at first for him to connect with her son. Here's this guy, who can make ANYONE laugh and react in some way, who said "I could have been on fire in the room and he wouldn't have noticed." Then he said something I am going to hold on to. He was talking about what kids with Autism are here for. He said... "These kids [have] come to show us how to go somewhere deeper as far as loving. They show us that we have to take our expectation out of the equation and just be there because we want to be there for them," he says. "What I learned is to kind of sit back and try to connect. If it doesn't happen, it doesn't happen, but just be there for them."
Isn't that a great attitude to have.
I adore my children. That's what makes this all so hard at times. I want more than anything for them to be healthy and thrive. But I also need to work on ME. As I work tirelessly to find answers, I also need to just sit back and remember to enjoy them. MY attitude is something I DO have control over, so I am going to really make an effort to stay jovial and hopeful. To heal and live fully. To put positive energy out into the universe and sit back and see how it all unfolds. Because we really are blessed.
Saturday, September 20, 2008
"Avery. Where is your mamma?" "Avery, can you point to your mommy?" "Avery?" "Avery?" Doctor turns to me... "Is she usually this non-responsive?"
"Yes. Especially with new people," I explain. But she knows me.
This child, this baby of mine who is almost 2 and a half, who I nursed for 15 months, who I held and loved with all of my heart and soul from day one, who I shared laughter and peek-a-boo, and silly moments... she knows me. In a room FULL of women, she will smile and approach only me. She will climb in my lap and snuggle. She knows me. As far as we have lost her in this awful disorder... she still knows me.
After our almost unbearable evaluation on Wednesday, Thursday we had our 6 month follow up visit with the developmental pediatrician. No more doubts in her mind this time. Full blown Autism. Little to no progress in 6 months. Wants us to take her in to the geneticist for further testing to see if she has Rett Syndrome. Never did I imagine I would pray that this is "just Autism." But, she knows me.
Friday I was late driving Avery to therapy. I got a speeding ticket and totally lost it. Where is the good luck. So much for my charmed life. Thank god she still knows me.
But things could be worse. They could always be worse. And she knows me.
So today I am a mamma on a mission. I am determined to be the medical advocate for my sweet child that we have yet to discover. No one seems to know anything about Mastocytosis here in Texas. The doctor in Boston who found the link between Masto and Autism has been in touch with us and we are going to participate in his research. But I want more. I have been researching myself and have found that there are some trial studies that suggest that systemic mastocytosis might be helped with a stem cell transplant. Since this is the ROOT of all of Avery's problems... this is the avenue by which I am going to focus my attention. We saved Kaylee's cord blood for a reason... now maybe I can actually use it to help Avery. If I have to send a letter to every stem cell transplant doctor in this state and beyond I am GOING to figure this out for her. She was with us before, and she STILL knows me. She is not gone yet. I am going to hold on to her as tight as I can, and use all the power within me to pull her back.
Wednesday, September 17, 2008
So, it seemed like we were rolling along pretty steady. Avery was doing okay in therapy and preschool, not much progress, but a little less regression. Kaylee was thriving. Growing like a weed and showing off new skills all the time. We were getting into a routine. I'm back at work one day a week, enjoying the break from my own crisis. Things were just starting to look a little brighter. BAM... assessment time. I hate... no, I despise taking Avery to a new place for a developmental assessment and having to relive the last 15 months of hell. And this time, she was hating it too. When it became clear that she was not going to respond to the evaluator, she was strapped into a wooden chair, favorite toys snatched from her hands and repeatedly asked to perform... which she was in NO mood to do. "Point at the bear's eyes.." over and over and over again... then "put the ball in the box" over and over and over again. The evaluator saying "she hasn't looked at me one time today." No shit lady, you took her toys and stuck her in a wooden trap... I wouldn't look at you either. I can promise you that she looked and ME several times as if to say.."what the hell is happening here mom... get me outta this place!"
And then there was my portion. The "parent report" side since Avery was not going to show off her skills. Can she do this??? "no" How about this??? "no" What about this??? "Well, she used to, but not any more." and so on and so on. So I am ONCE AGAIN reminded of what her deficits are. How she can't do basic things 9 month olds can do. "But she knows her letters!!!" Only for the evaluator to test this and Avery just stared off into the corner... she had checked out of this place!
Ugghhh. I started to check out too, and daydream of having a "normal" therapy free day with my free spirited toddler eating normal food at a park, having fun, swinging and sliding down the slide. I will survive this day, and many more like it that I am sure are in our near and far future. It sucks though. Autism sucks.
Monday, September 8, 2008
Today was Avery's second day of preschool. The first day was good... today was even better. On the first day and at the open house it was clear the teachers were nervous about Avery being their "special needs kiddo." They asked me several questions like "what sets her off" and what kinds of repetitive things she liked to do. As I have mentioned before, Avery is an under-reactive kid on the Autism spectrum. It takes ALOT to even get her attention. When we went for 4th of July fireworks that were literally right above us, she barely noticed the noise. Anyway, most of the kids were crying on the first, and the second day. Apparently, at any given moment, at least 3 of the 9 kids were upset. On the first day Avery struggled a little bit with transitions (moving from outside back in) and with sitting for long periods during circle time. Today, she went through the day like a champ, even saying "hi" and waving to another little girl when her therapist (who is so kindly there to shadow her) showed her how. Phewww. I must say I am extremely relieved. Bryan and I are working so hard to try to figure out how to help Avery, and how to make the right decisions when choosing therapy, schools etc. I am beginning to have hope that at least this decision was a good one.
On another note, in the last week a few other things have come up. I joined an online support group for parents of kids with Mastocytosis. One of the other mom's there mentioned that her son also had both Masto and Autism... then another one. Finally, they referred me to a site where a doctor at Tufts University is seeking funding and data to do more research on the link between Autism and Mastocytosis. Come to find out that kids with Mastocytosis are 7 times more likely to ALSO have Autism. Why you might ask? Well, the theory is that when your body produces way too many mast cells (the cells responsible for hives and healing) the mast cells not only infiltrate the skin, but also other major organs such was the case last January when we found out that Avery has too many mast cells in her bone marrow as well as her skin. Well, these cells can ALSO invade the brain, causing inflammation and releasing a chemical that makes the brain more susceptible to damage from neuro-toxins... such as those in vaccines, viruses etc. So, this explains WHY Avery was FINE, then after several illnesses, vaccines, antibiotics, etc, her brain started to become inflamed... CAUSING or at least looking like Autism. So, FINALLY we have some answers. We have contacted the doctor in Mass. who is looking further into this link, and we may participate in some research studies that could help with future treatments! If you are interested in this, please check out the link at http://www.wickedlocal.com/brookline/archive/x160320501/Brookline-doctor-seeks-autism-breakthrough In the meantime, however, we wait. Patience is NOT a virtue of mine. When I found out I was pregnant, I wanted to know the sex right away, when Avery turned 6 weeks old, I wanted her to sleep through the night the next night (who knew 2 and a half years later she would be up for hours at a time EVERY night), and when I found out Avery had Autism, I wanted answers and help.. yesterday. I am working on it though. Whether I ever wanted to or not! So yet again, another blessing arises from this whole messy experience. It's the littlest things we are learning to appreciate. And we do so with all the hope in the world.