Andrew and I just returned from four days of therapy at Svetlana Masgutova's Family Conference in the Cities! It was wonderful - let me tell you all about it!
My mom came with us, which I am so very glad for! ( If you ever go, bring another adult or "helper" with you!)Shawn and Evie also (drove separately) came up on Wednesday to help out and they were able to stay until Thursday night - which I also really appreciated. Then, my dad came up Saturday night, stayed the night and went back Sunday afternoon. I'm so glad that he also got to see them do therapy on Andrew, and he got to talk to Svetlana also!I was feeling really overwhelmed with it all, so I feel very blessed to have had so much support :). (although, I think usually just two adults are needed).
I hadn't booked the hotel for Wednesday night, which I should have, so thankfully, I didn't have to worry about moving all our stuff from one hotel to the next during therapy! Shawn did all that for me on Thursday!
The conference was in a very nice hotel, and we received a free breakfast buffet each morning which consisted of various melons and berries and fruit and eggs and sausages and french toast and muffins, etc. etc.!I'm really missing that buffet of fruit... :)
They also provided our noon meal - again and wonderful, tasty buffet of fruit and gluten, casein and soy free foods and they really were tasty! Wonderful vegetables and fruits, and meat and pasta, and kids meals of chicken fingers and fries, for kids who are picky - all GFCFSF!
OK, enough about the food :)(can you tell it's hard for me to get back into the swing of cooking ? haha)
Thursday through Sunday Andrew received six 50 minute sessions of therapy each day. Each session was with a different therapist who focused on a different aspect.
The first day, was a bit challenging for Andrew. He was meeting so many new people, and having 6 new people touch him and work on him. But by the next day, Andrew really got into "the swing of things".
Here are some things I noticed that seem remarkable to me. They are all little things, but still, to me it seems big.
- the 2nd day, I saw Andrew hold still while they were working on him! This is huge in my opinion!!
-he really grew in his ability to pay attention! He was more present, if you know what I mean. The way I saw this was that, he was holding still longer, and making eye contact, and you know, paying attention :)
- One thing that Andrew has never been able to do is to lay on his side. He hasn't ever known that he has a side since one of the ways Fragile X affects him, is that he doesn't have a good sense of where he is in space. That's also why he is so wiggly and doesn't sit still.Well, they worked with him, and he is doing better at being willing to lay on his side! Which means It will be a little easier to do Spinal Galant (a reflexI'm trying to integrate into his body)! Having the Spinal Galant reflex integratedmeans he will be able to calm down and pay attention, and a host of other good things. So, we'll keep working on it :)
- Also, I learned that since Andrew has some neurological wires crossed in his brain, it means that unless he is making eye contact with me, the things he hears me say, he often doesn't understand. He hears the noise/words, it just isn't processed correctly. Which is why, when he is several feet away from me, and I call him, he acts like he doesn't hear me. Yet when I get up to him and bend down and look into his eyes to talk to him that he hears and THEN obeys. It's so good to understand what is going on!!!! It helps me sooo much, as I'm sure you all can understand! How thankful I am that he has a good visual sense! Some children still struggle to process what you are saying even when you are looking into their eyes, but I was told Andrew does not struggle with that - which I agree with.
- I also learned a technique to do on Andrew when he starts getting into other people's space, pulling their hair or pushing them. Do the Hands Supporting reflex integration on him! This is basically me going up to him, taking his hand, pulling his arm out so it's almost straight (never locking elbows :) ) and doing a cha cha rhythm on the heel of the palm, which is the activation point. I can also put words to his actions. Such as, if he is wanting to play and be friends with another child, I can say, "I know you want to play and be friends, but pushing is not the way to do it" , and I would be saying this at the same time that I am few Hands Supporting movements on him.
So fabulous! It's just so good to have a plan and for me to have some way of helping Andrew!!
- one of the therapists also helped Andrew and me out with doing the ATNR reflex. That is one I have never been able to do on him. But, she broke it down, and we worked on it together, and so I am hoping that I will be able to do it now on him.
- one other good thing I learned was that if a certain reflex seems difficult to do (like ATNR), if i do the other reflexes that I can do, then the difficult one will become easier to do down the road because his other reflexes will be more integrated, and therefore, it will be easier for him to do it with me.
- I also learned that if Andrew holds his breath at all during my reflex work on him, that his body won't likely integrate that reflex as well. It's always good to do what we remember to do, but as we go and have more opportunity to learn, making sure he is not holding his breath is one thing that can make a big difference. Apparently Andrew holds his breath when we do the Hands Pulling reflex work, so the therapist told me I may not be able to do that one on him until Hands Supporting is more integrated. I think I'll still work on the hands pulling though, just so I can learn to see when he is holding his breath and when he is not, since that is not something I had noticed before...
- On the 4th day, Andrew did something really cool :). We were in the proprioceptive and cognitive integration session. The first 3 days of it Andrew really disliked standing on the balance board. (the balance board was a big square shape). He struggled at first with even sitting on it. But the last day, he decided to stand on it on his own for a little bit - he only leaned against the therapist for support!
Here's the really cool part. Then, Andrew decided to take the toy he had been playing with, which was a ring large enough for him to step into, and he pulled it up to his knees and started walking around like that! (the ring was just big around enough for him to pull it just above his knees). It was so comical and cute and so great because, as our therapists pointed out, how creative and imaginative for Andrew to think of doing something like that all on his own! He did this for quite some time, adjusting the height of the ring on his leg, and walking all over.I was so happy to see this, and our therapists was impressed as well! That to me, was the best moment of all!
- one last thing that Andrew did which he has never wanted to do before - he rides on his belly on a square scooter while someone pulls his around. He loves it now, and now does not want to ride it sitting anymore :)
- here's one last thing I learned - tactile (like embracing squeeze/bonding) is the most foundational reflex integration work, then comes neuro structural, then i don't remember what's next. Anyway, that's why doing the embracing squeeze and bonding reflex is so huge! I noticed a huge difference when I started doing it on Andrew back in November, and that's why I need to keep it up! I also learned that doing figure eights with my finger or hand anywhere on his body (a toe, the whole foot, an arm, leg, just part of the leg like the calf, his back, etc.) is good for his system.
tactile input is good for all people. Sometimes when Andrew is upset, I will rub his back in a circular motion, but I learned that is actually not good (it certainly never helps to calm him down, I think it just helped me to feel like I was trying to help him). That really messes with the neurological system, so stroking close to the spine up or down, or doing figure eights with my hand is best. Definitely a practical tip for me!
Whew! I know this is long, but I really want to write all the highlights down! So, as far as his assessment with Svetlana, this was his second one. His first was in November. She could see good improvement on all the reflexes that I worked on! She of course, didn't actually know which ones I worked on, but as she was assessing him, she would list off the ones that were improved, and they were the ones I worked on, so that is encouraging! I could tell also, that he had improved.
In closing, what a wonderful week/weekend! Svetlana told us to wait 7 days before starting any therapy work on Andrew, since it was such an intense 4 days of work, and so Monday we'll be back in the saddle again :)
I'm so thankful for this opportunity! I met so many wonderful people - Therapists, and other families! There were children there from the age of 14 months up to 18 years of age. All kinds of diagnosis were present - autism, fragile x of course (my cousin who has a 16 year old son with FX was there, which was really great! we ate our lunches together) and some diagnosis I hadn't heard of, maybe cerebral palsy. A couple of the kids were fluent in 5 languages, and one of those kids had two more languages under his belt that he was "only" conversational in :). People from all over the world were there. Mostly Americans, but some from India and China, and Canada, and of course a few therapists from Poland. Some of the therapists where from other countries originally, but had moved to the USA. So it was a cultural experience as well :). oooh, and as far as cultural goes, we found the best little India Cafe' a few blocks away from the hotel. Yum yum!
I'm so thankful we were able to attend. It's huge for us! Now I need to do MY part at home to keep the progress going!
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