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Monday, January 2, 2012

January 1st marked 4 months since Garrett's autism diagnosis. At that time he made very little eye contact with almost everyone. His activities were very limited. He wouldn't even flinch when I called his name. He was in his own little world.

Today Garrett will put his arms up and say, "up" to be picked up. If he has his hand in the cat's water bowl and I yell "no!" he looks at me and laughs. He still had a hard time with eye contact but it has improved tremendously. With help, he is able to complete a simple puzzle. He eats yogurt with a spoon, sits at the table and eats snacks from a plate. I have seen a great improvement but there's still a long road ahead for him.

AJ was diagnosed at the end of October. With 2 months of therapy he has greatly improved his ability to get his needs met. He can point, ask for more, bring me something that he wants. He's using words more and shows an interest in what his sister is doing. He seems like a typical toddler with a few quirks.

The boys start school on January 9th. They will be getting 2 hours a day of ABA therapy 5 days a week. ABA stands for Applied Behavior Analysis.

In looking back at our experience with Birth to Three (B23 - CT's version of Early Intervention) I am very disappointed. When Garrett was diagnosed I knew very little about what to expect from B23. After Garrett's evaluation they took a month to score the results. Then they gave us an audiologist as a therapist.  For 6 weeks I felt like nothing was happening. It wasn't!! I had to keep pressing and pressing to get more services and the right people. I feel so sick over this. What about other parents who don't know any better? It is a case of only getting what you ask for and not knowing what to ask for. Pretty gross if you ask me.

We will continue getting services from B23 during the hours the boys aren't at their new school.  I have worked with them to assemble a team that I feel comfortable with. The guys will be getting over 15 hours of therapy a week each - hopefully closer to 20.

I'm really excited for the boys to start school. I'm also nervous and a sad. My little dudes have to work so hard for things that come naturally to other children. I worry about them being at school without me and unable to communicate with me if something is wrong. Trusting people isn't my strong suit. My gut tells me this is the right decision and a very good choice for them. I look forward to reporting back all of their successes.

As for Angie, she is such a good sport. There are literally 7 different people that come in and out of our home on a weekly basis for Garrett & AJ. 18 hours of people working and playing with her brothers and not her. She handles it so well.  

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” 
 Albert Einstein

Sunday, December 11, 2011

Little lights of mine...

That little light inside, I'm gonna see it shine. 

That little light inside, please let me see it shine. 

That little light inside, I'm gonna see it shine. 

Let it shine, shine, shine, let it shine.    

Friday, November 11, 2011

AJ's Evaluation at Yale

I've been holding my breath, not wanting to write another post, hoping this post would be about how valuable we were to Yale because we had identical twins and only 1 had autism. That does happen 30% of the time, but not for our boys.

 On our wedding day the officiant asked for a moment of silence. She asked that everyone direct their prayers, kind words & good vibes towards Drew & I. She said that during hard times we could draw upon that moment, feel all of the love that surrounded us on that day and use it to help us get through the challenges we would face during our life together. I thought about that on the way home from Yale this week, when we learned that AJ also has Autism. It was the first time I really grabbed on to that moment and I was surprised at how much comfort it gave me.

 I don't really have much else to day today. In an odd way I am relieved. That must sound awful. I just can't imagine what it would be like to have 2 children that look identical and only 1 has special needs. What it would be like for each of them. No doubt they will never be alone, because they have each other. That would have been the case either way.

Friday, September 30, 2011

I've been hired!

I have a new job. It's a work from home opportunity. I'm a newly appointed advocate for my son. A full time job, no pay, and if I fail it can largely affect my son's future.

So, what does an advocate do?

When a child has autism the state mandates a certain amount of hours for therapy to be completed by Early Intervention (EI). So it sounds like if you need 20 hours a week, you'll get it, right?

The problem is how the hours are used. Yale suggested that Garrett start out with 10 hours a week of therapy. Specifically, 5 hours of speech and 5 hours of ABA Therapy - the leading proven treatment for people with autism. EI doesn't require their therapists to be ABA certified. Initially EI only offered us a half hour of a week of speech. There are various other therapies that they will give us, but not what has been recommended. They won't give us the max hours either. They are understaffed and will make any excuse to give less than what is mandated.

Being a new "advocate" I had to arm wrestle EI for more hours. I can't say I won, but I did get another hour of speech added. That's only 1.5 hours a week. Not even close to what Yale has suggested and it still leaves us looking for 5 hours of ABA and 3.5 more hours of speech. Obviously I need more training in this new job of mine.

Tomorrow we are going to look at a private school for Garrett. It is 45 minutes away and will probably cost more than most colleges. It may give him an edge. It may help him become the best Garrett he can be. So we will take a look and if it is the right fit, we'll find a way. How can we not?

We are hopeful that we can be partially covered by insurance. So far they are really giving us the run around. We may consider putting Garrett on medicare, if they provide more coverage.

Meanwhile, Angelina has started pre-school and she absolutely loves it! I think taking a break from her brothers has been really good for her. I already see strides in her language and social skills in only 2 short weeks.

AJ is being evaluated for autism by EI in October and by Yale in November. The odds of a sibling having autism are 30%, according to Yale. An identical sibling is much higher. It is hard to tell if some of his behaviors are picked up from Garrett or if they are truly his own issues.

So for now, we wait and see.

We are all advocates for our children, if they have special needs, if they are typical - no matter who they are. Even though I'm new at this, I have a suggestion for you. If you feel like your child needs advocating, don't hesitate.

Go kick some ass. No one will fight like a parent will.

Tuesday, September 20, 2011

The Luckiest

My name is Tracey. Me & the hubs met on in October 2002.  Our first 2 dates were NJ devils games - we're both big NJ devils fans. We moved in together that summer and got engaged at the hockey hall of fame in February 2004.  Got married the following summer, surrounded by our friends and family.

We considered ourselves the luckiest.

In 2008 our daughter Angelina was born. The light of our life, after a battle with infertility, heartbreak of multiple miscarriages and the product of assisted reproductive technology. This journey helped create long lasting online friendships and an appreciation of the human body and modern medicine.

We considered ourselves the luckiest.

When our daughter was 8 months old something crazy happened - I got pregnant on my own. (well, not totally on my own - my husband played a part!)  You can imagine our surprise when we found that not only was I pregnant, but there were 2 babies in there. The Doctor said "There's one, and there's the other one." I said, "The other one what? The other one of what?" I didn't get it. Then I asked if it had 2 heads - I didn't quite understand what he was getting at. My husband did, and he giggled nervously.

About 8 months later at 35 weeks and a few days, our identical twin sons Andrew & Garrett were born. A VBAC, which seemed to be a big deal to the staff at the hospital. I didn't care how they got here, I was just glad that they arrived safely and after a 2 week NICU stay we brought them home.
We considered ourselves the luckiest.

I decided to start this blog because last week our son Garrett was given a provisional diagnosis of autism. So much of my strength and knowledge during infertility was bred from online support and people's willingness to put themselves out there. I'm hoping that by sharing this journey I'll help others who are going through this.

Maybe we can all help each other.

We are very hopeful about Garrett's outcome. The staff at Yale who evaluated him feel that he has a bright future. With a loving family behind him, he'll be the best Garrett he can be. My kids will all be the best they can be. They are happy, smiley kids, with parents who will fight for them, no matter what comes their way.

We consider ourselves the luckiest.

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