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Thursday, March 30, 2017

The Month in Moments: My Little Cricket 3 Years, 1 Month Old

This month, as is every month, was a rollercoaster of ups and downs. Thankfully we are looking at way more ups than downs. You are doing SO MCUH BETTER. Each and every week you improve by leaps and bounds. I am loving the progress you are making and your therapists say such wonderful things. They say that you are progressing faster than any client they have ever had. They are saying that you are so smart. They say that you never forget anything. They say that there isnt going to be anything to worry about in another year or two. Hearing all this is wonderful. I am so proud of you buddy.


I guess the most significant thing that happened this month is that we got the results back from your genetic testing. You have a rare duplication on your 16th chromosome. That you may not be autistic but that you may just be showing delays due to this duplication. I am as confused as you are. In fact I went through several days of complete and utter shock, trying to wrap my brain around yet another curve ball. But I always come back to the same thing. It doesn’t matter the label you have. I can’t worry about that. Because no one can agree it doesn’t lead me to anywhere good. Instead I work on what areas you need help with and get you that help. Besides what I set up is working. Diagnosis or no diagnosis you are improving so much. We are going to work this out buddy don’t you worry.

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We saw your general pediatrician this month for your 3 year checkup. I was a little nervous that you may not have gained enough weight to stay on your curve but I was hopeful. After all with the nutritionist appointment, with me modifying your diet, and with the eating program I had you in I have been working hard for that number to at least stay the same if not go up. And you know what, like everything else it is working. You are now 30th percentile in weight and 75th in height. Still tall and skinny but you are up to 30th percentile in weight from 15th percentile at 2 year 3 months. You still have issues with food. I am still going to have to continue to work hard to get you the proper nutrition you need in order to grow right. But at least this is a great positive reinforce to continue what I am doing.

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I feel so bad sometimes when I step back and look at our lives. I am a hot mess crazy overscheduled, overworked mom. And you, your childhood is being spent way more structured and planned that I EVER anticipated. I know that this is necessary. I see the benefits but that doesn’t mean that we cannot morn the things that we miss. You are in 20 hours of therapy a week (half of what the experts recommend). So the down time we do have we make sure you have almost no structure. You love to catch a 20 minute episode of your favorite new cartoon, Sarah and Duck. You love anything and very thing to do with the yard and the water. And of course parks and play spaces galore.

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With a slightly more consistent schedule. And now that I feel like I am getting my feet back under me again. I have slowly, oh so slowly started squeezing in more play dates with our fellow mom group friends. You need to be around kids your own age. We both miss our friends. And so this month we had 4 play dates. Not nearly what we did in the past (which was usually 4 a week) but it is a start. You were always social however now that you are more regulated you are even more apt to play with your peers. Most of the interactions are facilitated by the other child but you don’t have any problem following through with someone’s play. I love these moments. They are the times when I know deep in my gut that you are going to be just fine.

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Grandma came to visit this month and she started this whole bathing you and your sister in the sink thing. I always bathe you in the bathtub, but once I saw that the sink worked I thought it was genius. Not sure how often we will do this once she leaves but now I have an option, a plan b, for when my back hurts.

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You are talking so much more. Talking on what catches your interest. Sharing with me more about what is making you happy. Talking about the things you see as we are driving. Your spontaneous language is exploding and I couldn’t be happier. We talk about red lights and green lights ‘red means stop’ and ‘green means go’. We talk about the bumps coming up, and you say ‘weeeeeeee’ as we bump over them or when we go down a large hill. You talk about the colors, and the birds, and the dog you see crossing the street. LOVE LOVE LOVE LOVE LOVE!

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Life is busier than I would like. We are often booked every moment of every day. Sometimes we get a cancelation and can squeeze in something fun or more likely something we have to do like a haircut but that is rare. Our weekends therefore are zealously protected. Other than your swim lesson and our occasional outing to the Sunday farmers market we fill our weekends with nothing, or at least very little. The balance, although not perfect, works for us.

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We started a new ABA company this month. The old company I couldn’t find a therapist I loved. This company we were able to find someone and I am so excited at the progress you are already making with her. Since ABA is more targeted toward specific goals, and since they write down more data, every six weeks we sit down and go over your progress. I cannot wait to see in the next few months how far you come.

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Occupational therapy has shifted focus. In the beginning they were working on your regulation, on your ability to focus on a task, on your ability to follow directions, on your emotional connection, eye contact and language. Now that all of those are moving along well they are now targeting your low tone. You have low tone in your core, your legs and your arms. It isn’t enough to be super worrisome, you walk, eat, sit without issue. However the jumping, the coordination issues you have sometimes when you run and your ability to sit with good posture are compromised. So these past few weeks the physical demands of your sessions has risen significantly. With that it seems like you are turning a corner. You have gotten a little white a few times while swinging. At first we couldn’t quite figure out what was going on but them our OT realized that you are now responding appropriately to stimulus. You no longer have to be flooded with sever swinging and spinning in order to engage your vestibular system. This is a VERY good thing. Your system is now reacting normally and it is now time for us to pull back on the over sensory things we have been doing with you.

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While grandma was visiting this month she was able to come and see the JASPER program at UCLA. The JASPER training sessions we have been a part of at UCLA are sadly coming to an end. Thankfully we have a JASPER certified therapist that will continue to come see us at our home. You have done so well this month with JASPER. You have used a block as a muffin (Fake food) and you pretended it was hot. You used magnatiles to make an oven to cook your muffins in. And you used a man figurine to pick up the blocks and build with. You are getting into lots of imaginative play. It is still scaffolded significantly by an adult but you are totally getting it. I bought you a play house (read doll house) much to your fathers chagrin for your birthday and we have used it so much this month to continue building on your imaginative play. We are getting there buddy.

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Since JASPER ended we had a time slot open which I decided to fill with another floortime session. She has been able to get some beautiful imaginative play circles going with you. They feel higher and more natural than other therapies. You love her pirate ship and now will ask to go to her car to get it out. You play pirates, and with the shark trying to get the pirates and the treasure and so many wonderful things. She has also been working with you and a neighborhood boy. And with some of our play date friends this month.

Your speech is skyrocketing and you are finally hitting the 2-3 word phrases and adding 2-5 new words a week this month. Both are huge milestones.

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I finally found you an amazing typical preschool that you will start in September. We will continue with the clinic based preschool until the end of July. I almost kept you in until the end of August but I decided to take a month off from school. There is a fear of slowing down the momentum that we have, but there is also the fact that you have been working so hard since January. You deserve a little bit of summer. So in August we will use the time you would normally be in preschool to do summer stuff. We will go to the aquarium, to the beach, to splash pad and just play in the sun. It will be divine and a wonderful little gift to us both.

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Your swim lessons ended up being a fantastic idea. You are doing so well. Two months ago when you first started you would clutch the instructor with your arms and legs in an unhappy death grip. Now you will hold her hands and kick your feet. You are going on your back. You are going under water. Sure you are still a long way off from actually swimming but you are doing AWESOME from where we started. We leave for vacation in 3 weeks and I cannot wait to take you into the pool with your new joy of the pool! We are going to take the month of July off, and resume lessons in August. YAY swimming!

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