April is Autism Awareness Month!

Let me start with a little back ground on Tristyn. I had a normal full term pregnancy with Tristyn, I was induced at 42 weeks. Tristyn was a big girl at 9 pounds even and 22 1/4 inches, she had some problems with low blood sugar and needed an IV for about 48 hours, but besides that she was perfectly healthy. She was a wonderful baby, she started smiling at 4 weeks, and sleeping through the night at 8 weeks, she was a very social baby. She was breast fed until almost 6 months old, and never had a problem.

We became concerned about her gross motor skills when we noticed she was way behind other babies her age. She didn't roll until 5 months, sit up - 9 months, crawl 13+ months, walk 18+ months, etc. She was enrolled in the birth to 3 program and they helped her out alot. One of the problems they found was that her joints were hyper flexible. At 2 1/2 years old she was still only using simple words - mom, dad, ball. So we also started speech therapy for her. She graduated from the program at age 3 and we started her in a early education program. This was the best thing we could have done.

We asked the B-3 therapists & her early ed. teachers if she could have Autism, she had several, what we call "quirks" and we were concerned. But we were always reasured that she just had some delays and would catch up. Well, last year at this time we sat down with her teachers, a school psycholigist, and the principal, and she was finally given the diagnosis of high functioning autism, which opened several educational services for her. So the lesson learned here is, if you think something is wrong, but the professionals tell you your child is fine, push it more, you know your child. I don't want to change Tristyn, or pump her full of meds, or do therapies that she is not comfortable with, I love her the way she is!! I just wanted the peace of mind of knowing what was going on.

Now as I mentioned before, she has some "quirks" Just recently she started adding the "zir" sound at the end of some words & sentences, this is very cute, espically when she says "yes" it comes out sounding like "yes sir." She also loves the word actually. Ask her if she likes something and you might get an answer like this "actually, I do "zir." These are some of her harmless quirks, one of the harder ones to deal with stems from her sensory issues, and that is a fear of "loud" public bathrooms - namely bathrooms with automatic toilets & hand dryers at echo. For some reason, this really hurts her ears - it's like torture to her. So if you are ever in a public restroom and hear a child screaming, please be sympathetic, it might be Tristyn.

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Spread the Word to end the Word!!

Please stop using the "R-Word." The R-Word meaning "retarded." Please read Jennie's blog entry at A Little Something Extra For Us. She sums it up better than I ever could. We had the privledge of meeting this family and getting to know them while down in Milwaukee with Maddy. Her son Micah had open heart surgery at the same time as Maddy. Maddy went into surgery around 10:30 and was in the recovery room by around 7:30pm. This family was there before us and was still there when we left, I can only imagine their long day! We were the last two families in the waiting room that evening and so we were able to talk, our pastor was also waiting with us so he said prayers for both Micah and Maddy.

Since then I have been following their blog and have learned so much about faith and how to handle challenges. Since Tristyn has been diagnosed with autism I know were she it comming from when she says my son is NOT a "Down Syndrome baby", he is a child first! Tristyn is not an "Autistic girl" she is a child with autism. I want to make sure Tristyn knows that she is God's child and that she deserves to be treated with respect.

It makes it very hard to let her know just how special she is when people just keep using the "R-Word" So please think before you speak!!



As a side note: please vote for the "Kids With Heart" Nascar design, sponsored by CHD Awareness. Click here to vote. You can vote once everyday!!


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Sorry !!!

OK I’ve been slacking these last few months with posting. There has been a lot going on here in our household! Maddy is doing great, she just started walking a few weeks ago, at about 17.5 months old! She’s also saying a few words: dada, momma, up, ball, all gone, and kitty. She is still on the small side at about 20.5 pounds at her 16 month visit, but health wise her doctor is happy.

In May Tristyn was diagnosed by her school with Autism. She was diagnosed very late at 4.5 years old, most children are diagnosed between ages 2 & 3, so this leads us and her teachers to believe she has very high functioning Autism. This is just an educational diagnosis, we are in the process of getting a medical diagnosis which will open up more therapy services for her. I am so glad that the school finally tested her, because we were beginning to think we were doing something wrong as parents and this finally answers questions about all of her quirks, which I will talk about in another post.

In Sept she started school again, we decided to let her have one more year in pre-K this year, she just turned 5 in July, and she’s just not ready for kindergarten yet. She has speech therapy again this year, and we added Occupational & Physical therapy because she has very low muscle tone (hypotonia) Well, that’s about it for now, I promise to start posting again more regularly!