MOMMY!!!!

Makinna is 5 and I hear it every 5 minutes...... "MOMMY!!" "Mommy I need a drink" , "mommy I'm hungry" , "mommy I'm ready to wipe" After a while you hear "MOMMY!!" and you cringe thinking "oh God what now?! Can't I even get the dishes put in the dish washer?" But about a month ago I heard it. "MOMMY!!" from another room. But wait Makinna was sitting right next to me. Who could that be? Could it really be...... GAGE! He was actually calling my name ! Oh the joy!
Now I frequently hear my name in stereo from both kids. Of course Makinna will attach a request on hers. Gage just calls me and I of course go running. (have to reinforce that behavior!!) I have come to appreciate so many things having Gage as my son. The sound of your name being called. When you have typical kids it gets tiresome but when you have a child who doesn't speak much it is music. Gage teaches me something almost everyday. (most days he teaches me that I have more patience than I could have ever imagined) I have learned to appreciate the little things. And I have also learned not to take for granted all the fantastic and wonderful things that Makinna can do. Although autism has been a burden for this family it has also highlighted our blessings.
OH have to go I hear it again........"MOMMY!!"

A Turning of the Tide?

We have decided to really seek out the biomed route for Gage. I have seen more improvement in the last 3 months of the dietary interventions and supplements than I have in the 9 months before with just therapy. I am anxious to go see a DAN doctor, to get a professional involved who deals with this all the time. Our pediatrician is of course not supportive of this. Saying there is "no scientific evidence" that biomed has any validity.
Well maybe he does not know what he's talking about. Discover Magazine's April (http://discovermagazine.com/2007/apr/autism-it2019s-not-just-in-the-head ) issue has an article about autism and how many subsets of autism may be caused by environmental toxins and about research that is going to to explore this. And research done by reputable universities.
After hearing stories from other moms and seeing the subtle but steady changes in my own son I can not discount the biomed approach. I know that hoping that this will "cure" my son is maybe setting the bar too high, but I can hope to make him the best he can be. I do hope that pediatricians will get their heads out of their butts and look a little deeper for answers. They often miss the warning signs or say " lets wait and see". They are missing the boat and wasting precious time for their patients that could be spent on intervention. Then when parents do ALL the research and come with questions they quickly discount them because of no "scientific evidence" I wonder when the last time my pediatrician read an article about autism was?
Maybe this Discover Magazine article is a turning of the tide. Maybe there soon will be "scientific evidence" Maybe... finally.... us crazy parents will be heard.

Navigating the maze

One of my greatest sources of frustration and angst is trying to navigate the maze of treatment options for Gage. There are so many options, tons of behavior type programs, biomedical treatments, traditional speech and occupational therapy. Which on will work? The answer is all or none of them. I have heard autistic children likened to a snowflake; all similar but yet each one unique. So what works for one child may not for another. There is no single answer.
Finding the answers for each child reminds me of trying to find your way through a maze and you have to collect puzzle pieces along the way, some of them fit some of them don't and the pieces are not free. Oh no! Some pieces are given to you by the school system or the state or insurance but many of them come with a large fee. ABA therapy 80-140$ and hour. Biomedical treatments: first visit to DAN doctor and first round of blood tests 500-3000$, supplements that may or may not work 50-300$ a month. Those are just two examples there's also RDI, VBT, the Son Rise Program and the list goes on and on..... So which piece do you pay for? There is no guarantee that that piece will be helpful. And many pieces of the puzzle give better results when put together with other pieces. And unlike other medical issues you do not have a knowledgeable person in charge. All the research and planning and decisions are up to you. If you pay for one puzzle piece and it doesn't work you beat your self up because you could have used the money for another puzzle piece that may have worked. It's all very overwhelming.
Right now we are exploring biomedical interventions for Gage. He has been on the GF/CF diet for a month and I am trying some other supplements. Wes and I were talking the other night and we are definitely seeing some improvements in eye contact and language. But I would love to take Gage to DAN doctor to help me at least figure out the bio med aspect. We are saving our pennies. Until then I research and research....
We are also working on getting an ABA program set up for him. We may or may not be able to get help with funding from the county. I found one therapist for 75$ an hour. Not a bad price really. ABA hours can be any where from 10-40 hours a week of therapy. Now she would set up the program and help get it started but not provide all the therapy. We couldn't afford that anyway!
We keep going, winding through the maze looking for the next piece that will be a good fit. Sometimes we get tired and have to stop and take a rest, but we labor on looking for the light at the end and the big piece of cheese.

Couple time (sort of)

Everyone needs a little couple time but couples with kids rarely get it and couples with special needs kids hardly ever get it! So last Monday it snowed and Wes took off work. We still had to drop Gage off at school, which is a 40 min drive. So we took Gage to school and decided to go to the grocery store. Now the grocery store has been remodeled. They have a child care area that you can drop your kids off while you shop, (are they geniuses or what!?) and a little coffee shop area with couches chairs and a fireplace. Makinna loves the child care area. She always begs me to go to the grocery store so she can go play at "The Tree House" Wes and I drop Makinna off at The Tree House and then decide to get a cup of coffee before we pick up our things. We get a cup of coffee and snuggle up on the couch in front of the fireplace at the cafe. It was nice to just sit there. And then I just started to laugh. It just struck me so funny (and sad) that to get a moment to ourselves we had to go to the cafe at the grocery store!!! We only sat for a few minutes and looked at the fire and admired the view out the window of the grocery carts all in a line waiting for customers to pick them up. I guess you have to find romance where ever you can get it.

Music to my ears

There is mischief afoot in my bedroom. I can hear giggling, laughing, squealing, and loud thumping. If my Mommy radar is correct the kids are jumping off the bed and I believe having a game of chase. (Mommy radar knows what is happening just from the sound) Having Gage has changed my views as a parent. If Gage was your typical child I would probably be back there right now scolding the kids for jumping off the bed and telling them to calm down since it is so close to bed time. But I'm not. Instead I am sitting here smiling enjoying the ruckus, because the kids are playing TOGETHER. Gage is never really interested in playing WITH anyone, and Makinna is always looking for someone to play WITH. Ironic that my children are such polar opposites. One of the deficits of autism is social skills. So Gage lacks the ability to know how to play with other children, how to share, how to take turns, how to interact with others appropriately. The kids end up fighting a lot because Gage lacks these skills. So as I sit here in the kitchen and listen to laughing and playing together, I smile. It is music to my ears. Bedtime will just have to come a little later tonight, for there is sibling bonding going on!!

Macaroni and Cheese Withdrawl

We are all suffering from this illness at our house. You see we have decided to take the plunge. We have decided to try the Gluten Free Casein Free diet for Gage. Now you may ask "What the hell is that?" In real words it means "No wheat No dairy" Not just no wheat or dairy but no wheat or dairy derivatives either. And let me tell you almost everything you eat has one or the other or both in it! We just came back today from my 5th trip to a grocery store of some sort this week. I have been to 3 natural foods stores and 3 grocery stores in 6 days trying to find replacements for Gage's favorite foods. Luckily he has accepted Chocolate Almond milk in place of cows milk and Ovaltine.
You may ask "Why would you commit parental suicide by taking out all of the staples of child hood meals, like mac n cheese (yea just when some incredible genius found a way to make it in the microwave!), chicken nuggets, cheese, yogurt, pasta...." Well I have heard many personal stories from real people about the improvement their autistic child made on the diet. I've heard anywhere from amazing increases in speech to small changes in eye contact and socialization. I have not been able to find any "scientific research" (because we all know that scientists know so much more about kids than their mothers) mostly because there is none. After all there is no big drug company that will make a bazillion dollars off of it so why fund it? But polls of parents of autistic children that have tried the diet show that about 60% of the parents saw some improvement. I thought this was good enough odds to justify paying $7.00 for a bag of GFCF pretzels.
Wes is being a trooper. He totally supports trying the diet. He is even being patient while I try to make mashed potatoes and gravy with out using flour or dairy. (I'd like to give that assignment to the Iron Chef!) What matters the most is if Gage likes it. The mashed potatoes turned out pretty good but gravy is another story. The first time I tried I bought a pouch of GFCF gravy mix and followed the directions. Well Gage was not impressed and I don't blame him. He took one taste and started gagging and rubbing his hand all over is face. The stuff was really gross! Tonight I had success with organic chicken broth ( the regular stuff has dairy in it) and cornstarch and a lot of salt. Everyone ate it and liked it. Phew!
We are starting slowly. The first 2 weeks are dairy free than we move into the gluten free stage. I know we can do it, lots of people do. But having your children part with macaroni and cheese is a big sacrifice. ( I think Makinna and will sneak it in when Gage is at school on Mondays but don't tell him!) All I can say is that this family will be eating lots of rice and potatoes. No more eating out. We have to pack lunch if we visit someone. But if this helps our son it will all be well worth it. I think we are already seeing some small improvements in language and awareness. He is now following directions almost all the time (or should I say like most 3 year olds) and he is saying a lot of new words. Just last night he took me over the the fish tank and pointed at the fish, looked right at me and said "Dor-tee". Dorothy is Elmos pet fish. I was shocked.
Well I want to finish this post out by giving a great big "hug" and "thank you" to Kathi. She is a member on the autism forum I post on and she has a fantastic GFCF blog. Her blog has given me oodles of ideas for easy foods that are GFCF and has lots of recipes for them too. She is a wonderful mom and an inspiration to me. Thanks Kathi. (I have a link to her site on my blog)

Ladies Man

Gage has always loved the ladies. He is much quicker to acknowledge a female than a male. Well, according to reports, this is also the case at school. Gage's main social skill is saying "hi" to get someones attention. At school the other day during free play in the gym he must have taken a fancy to the "older women" in his class, the 5 year old girls. He went up to one of them and said "hi" repeatedly the tried to hold her hand. When she finally figured out what he wanted the little girl (there are typical kids in his class) walked along with him holding his hand. He did this again with another girl. His therapist told me that before long he was walking through the gym (very proud of himself) with 2 little girls on each arm. (He must be taking after his Uncle Lee) And the girls evidently had some little tiffs over who was going to hold his hand next. I wish I had been there in person to see my little Don Juan in action. But I'm not all that surprised. He has a 5 year old sister at home whom he adores and he has always liked females. I'm hoping that maybe some of these older girls will take an interest in him and try to include him in social situations and games. I guess it good he's so cute!