Lucky (Wo) Man

We are country music fans at my house. A favorite artist around here is Montgomery Gentry. Makinna especially likes them. They have a new song out called "Lucky Man". This song speaks to me lately, especially the line.."I look around at what everyone has. And I forget about all I've got." (for full lyricshttp://music.yahoo.com/Montgomery-Gentry/Lucky-Man/lyrics/36514769#lyricstop )
This was especially true last weekend. I work on Saturdays and my mother has passed on the yard sale gene to me that runs in the women in my family. My husband told me about a community yard sale in a development that he had been doing some work in. He told me the houses were big, and boy was he right. The homes were just beautiful..BIG and beautiful. I found my self longing for a big beautiful home. Growing up I lived in very nice homes. The house we have now is just a simple rancher with 3 bedrooms and 2 baths, nothing fantastic but not itty bitty either. But the green eyed monster of envy was sitting on my shoulder. Luckily I heard that song on the way home, and I began to kick my self in the butt for even feeling envious.

You see I have a wonderful life. We have our struggles but over all we have a good life. Our house is small but it is full of love. My husband loves me. I know it with every fiber of my body. He loves the kids. He would do anything for this family. We laugh a lot together, our family. We do things together. We grocery shop together, we cook out together, we snuggle in our bed on Sunday mornings together. I believe that as my children grow older they will have fond memories of all the fun we had as a family.
My other blessings include; wonderful friends that let me go on and on and on about my troubles, and an incredibly supportive extended family that has helped us emotionally, financially, and with their time.
Overall life is good. We have our challenges. Seems like they have come one right after another the last 4 years. But we will persevere, we will laugh, we will love each other. After all I probably should not have a big house anyway. My mother also passed on the clutter and poor housekeeping gene to me too.

Testing foiled

Just a short note to say that our dairy testing was foiled. We gave Gage milk Sunday evening and Monday morning. Then I got a call from school Monday afternoon. "oh boy" I thought. Turns out he was running a fever and very lethargic. (which he gets with a fever) I thought at first "wow dairy really does a number on him!" But then I thought a fever of 104 was a little much for a food reaction. Turns out, that after a trip to the doctor, Gage has a sore throat virus. Poor guy. His fever is finally gone today but he is still cranky. I guess the dairy challenge will have to wait for another time.

Test Anxiety

I'm having some major test anxiety. Gage has been gluten free and casein free for 3 months now. He has shown a slow steady progression in eye contact and speech. But ...the diet is difficult. And how do we know its the diet and not just normal development. So next week I will test the dairy part of the diet. I am planning to give him milk 3 days in a row.
I don't know why but I'm having major anxiety over this! I would love to begin giving him dairy again but he is doing so well I hate to have any set backs. Since starting the diet he has not had those tell tail fire red cheeks anymore. Something he was eating was not being good to him. If you scroll down on this blog and look at the picture of Gage eating his birthday cake, you can see that he looks sickly. He looks so pale and washed out with dark circles. He doesn't look like that now. I guess testing is the only way to tell.
Wes is anxious to test, hoping that maybe we can start giving one or the other. Of course he will be at work most of the day while I will be at home with Gage. I guess we will see..... Wish me luck.

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.