Progress Abound!
It’s been far too long since I updated and I’m sorry for that. It’s a lot harder to maintain a website now, with Kaelyn doing so well. She WANTS our attention. She WANTS us with her, playing with her instead of beside her. She is in a very literal sense, coming out of her shell. On a daily basis now, she says or does something new and so remarkable, that I cry. Tears of joy, of relief, of pride in my beautiful little girl who is working so very hard just to BE here with us.
We started Speech therapy, FINALLY, about a month and a half ago. She LOVES it, one of her favorite things to do. Almost every day she says “Go to beech mommy” (still has trouble with some letters and speech comes out Beech). She has it Monday, individual and Wednesday with 2 other children. We are still waiting on OT, the waiting lists here are insane.
We have been unable to visit out DAN! doctor because the gf/cf diet eats up any extra money we have left, but are hopeful that after the holiday season, we can start saving up for a visit. We have barely seen our ped, because Kaelyn is never any sicker than mild sniffles. She is OBVIOUSLY blessed with an amazing immune system.
Her case manager from UCP, Jasmine came by the other day, it had been about 3 months since she’d seen us. (We moved and that screwed things up a bit) and she could NOT believe the change in Kaelyn in just those 3 months. She blew her IEP out of the water, had met every goal and then some. The ONLY one she still has an issue with is outdoor safety. She has no concept that running into the road is a bad thing and no matter what we do, she is not learning this. This is a constant worry for us. She has mastered the lock on the door AND the deadbolt, so we are installing an alarm, that will not only alert us, should she ever get to the door without us right there, but also, the sound of it with bother her on a sensory level and she would instantly back away from the sound, preventing her from going THROUGH the sound, out the door.
Of all her amazing progress, one particular breakthrough stands out in my mind and I think, with all honesty, I will remember this moment for the rest of my life. We were all sitting on the couch and she was chatting away in Kaelynese (her own language that I have NO doubt she knows what she is saying, but we can’t make out actual words) and in the midst of it she starts talking about “going to the park”.. She said “I want the slide…. the swing.. the teeter totter, the monkey bars… Go to the park?” For a moment, I just stared at her. Just sat and stared and she sat looking directly back at me. My eyes filled with tears and she said, “I’m sorry mommy”. I THREW my arms around her and said “You don’t EVER apologize for talking to us Kaelyn, not ever, Mommy isn’t sad, Mommy is PROUD of you, that was perfect”. It was one of the happiest moments in my life. I’m sure to many, it seems like such a small thing… but for her not only ask for something she wanted, list off several things associated with her want- she saw my tears and was empathetic. An Autistic child showing empathy is HUGE to a parent, especially one who has never displayed any empathy of any sort in the past. She knew I was “upset” and wanted to comfort me. Beautiful and perfect and simply unforgettable.
Another of my favorite changes in Kaelyn is her desire for her own choices to be respected. She requests what she wants to eat, which she always INDICATED it before, but now she SAYS it. SOMETIMES, she even says please, ALWAYS, she says Thank You. She likes to pick out what she wears…. I LOVE THIS. Some of the things she comes up with would make most cringe, but not me. She has a sense of style that cannot be mimicked 
A flowered dress over plaid pants, with stripped socks and a bright orange hunters cap… throw on those bright pink rain boots and BAM, that girl is in style.
Gluten and casein free is simply a part of life now. There is no difficulty in it, no struggle. It just IS. She was a very picky eater, before the diet and the transition was hard, I’ll never say otherwise. But now, almost 2 years later, she will try anything once and almost ALWAYS likes it. She prefers healthy food to anything with “junk” in it. The most unhealthy thing she eats it Flavor Ice pops. She breaks into the fridge to steal CELERY…. who does that?
Never, for an instant, will I regret going gf/cf. It changed our lives and made it easier for Kaelyn to make her way back to us. I have no doubts about that. I’ve seen how she reacts to even a small amount of gluten and it isn’t pretty. She becomes destructive, angry and self-injurious. Meltdown city. With casein, it isn’t behavioral when there is an infraction, it’s physical. She has diarrhea, her belly swells and the dark circles under her eyes come back, her tongue turns that icky whitish color that indicates yeast over growth. We HAVE tried her out on goat’s milk and cheese and so far so good and she LOVES it.
Ok, she just did one of those MIND BLOWING things again. She brought me her Spongebob magnetic writer thing, like an etch a sketch, but you use a “pen” to write or draw on it. She handed it to me and said “Mommy, draw Kaelyn” and I said “You want me to write your name?” and she said “Yes, Kaelyn, please”. So, I wrote her name, without saying anything and handed it back to her. She said ” K-A-E-L-Y-N KAELYN”. Pretty awesome. I wonder if everything she ever does in life will bring tears to my eyes or if eventually *I* will grow out of that?
So here is an update, amazing progress in verbal, cognitive and receptive skills. No medical changes at all. No meds, I don’t even think we’ve has to take her to the doctor since I wrote last. Just constant improvement.
I do want to add that this blog/journal/website, whatever this is, will be changing up a bit. I have previously never included my personal feelings or research on the role vaccinations CAN play in regressive Autism. I have alluded to it, but never openly discussed it. I didn’t want the people looking for biomedical information to take anything I say less seriously because my views on the vaccine/Autism “link” are not widely or medically accepted. Yet. But after much thought, the amount of research I have put into this and feedback I have gotten from physicians- I have decided that I WILL be including this information/theory/experience in my writings from now on and changes will most likely be made to the homepage.
To those of you who are absolutely against entertaining the idea that vaccines play ANY role in Autism, please, do not disregard the Biomedical information here. I am not a wackjob, talking about things I know nothing about. I am a mother who WITNESSED her child’s mind being wiped clean like a slate on the very day she received 7 shots. I am not saying they CAUSED Autism, but I do think they triggered something. Soon, I will write about the many theories I have encountered in my researching and explain why they fit into OUT story.
Well, my little lady is requesting a piece of toast and her patience has worn thin waiting for me to finish, so off I go to throw some vegan butter on gluten free bread It won’t be so long between updates again.
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Decided to come back and add a couple links that I feel are really important.
To those interested in trying Biomedical, seeing a DAN! doctor, starting the diets and supplements- Generation Rescue currently has a program going, offering grants to families getting started, if you qualify. Please, submit an application, the link is HERE.
Also- to anyone affected by ASD, if you’re a parent of a child with ASD, have it yourself or know someone who does- PLEASE take some time out of your day and participate in a website that is building a database of information FROM THE PEOPLE WHO LIVE with Autism, the parents, the individuals and they want to hear from US. Hear our stories, how we manage, what we do to help, treatments that have worked and those that haven’t. It take about an hour to complete their surveys and you will occasionally be offered things like a genetic workup done in Boston (this is INVALUABLE and they are doing it free, you just need to get there). You are in no way obligated to do anything, but every thing you DO, contributes to this database that will one day be available to those who dedicated themselves to finding the answers we seek. This site is called the IAN PROJECT and you can learn more about it HERE.