Life with Coco and Gigi... and Jack-Jack too!

Life as a Mom, A Homesteader, A Blogger and A Wife.

Our Therapy Updates

This week both girls are due for their 6 month Early Intervention reviews. It is a time to evaluate and change goals and see how are progress is going.

Here are my thoughts on how things are going with each therapy and a quick rundown for why they still need each.

Gracie

Speech Therapy - The why is obvious. She is 27 months and just now starting to talk. No one has officially labeled a cause but what we have deducted is somewhere between apraxia and very poor motor planning skills. We adore our speech therapist, Cathy, as the woman is like a baby whisperer. She can get things out of Gracie that amaze me. She manages to get the worlds wildest child to sit still for 15 and 20 minute periods of time. Right now Gracie is saying about 30 to 50 words clearly and is attempting about 50 more. She signs very well. She is still VERY frustrated right now. She watches as Abby strings 5 and 6 words together clear as a bell while she struggles to say simple sounding words. Thankfully we're all getting better and better at understanding her speech. The type of speech delay that she has is something that won't go away overnight. It will likely require years of speech therapy. Thankfully we got moving so early we're hoping she will be understandable by kindergarten.

Occupational Therapy - Most people hear OT and think fine motor. What they don't know is that most OT's do way more than that. Our amazing OT, Nicole, again... completely and utterly amazing woman, is fantastic with the girls (she works with Abby too). Gracie has sensory integration disorder. I honestly thought that diagnosis was a load of crap and then I had Gracie. Kids with SID have a hard time navigating through sensory input (what you see, hear, feel, taste and smell). SID would fall at the mildest end of the autism spectrum, although what she has is nothing like autism it just happens to be on that same spectrum. In Gracie's case she has a high need for "input" which is simply sensory information. She likes to gather her sensory information through her gross motor system. If we leave Grace be on any given day she progressively gets wilder and wilder until the point that she is almost out of control of her body. She does what our OT calls "bash and crash" where she will jump and bump and knock into things in order to gain input. She also has a hard time integrating loud noises, strong smells, distracting colors, certain foods, certain textures and certain clothes.

OT for Gracie is instituting what they call a "sensory diet". It isn't a literal diet but it is spending time throughout the day "feeding" her sensory system by touch, taste, smell, hearing and sight. We use things like joint compressions and stretching, breathing, textures, heavy work (pulling or pushing heavy things), swinging, etc. to excite her sensory system at appropriate times throughout the day. Again, when I used to hear of families using brushing or joint compressions I would think to myself how the parents must be loony toons... NEVER judge unless you have walked a mile in their shoes.

Abby

Physical Therapy - As most of you know Abby has been in PT since she was 4 months old... the poor kid never met a milestone she wanted to reach on time. :D She has made up and down progress in the past couple of years but has recently stalled out. Her gross motor skills, muscle tone, strength and balance are very poor. We have had the same PT for almost a year and a half and lately we seem to have stalled out as a unit. Obviously this will be the toughest part of the 6 month review. I am not sure if Yemi (our PT) is able to meet Abby's needs. What she has is rare, really, really rare. They can't fix it. Her balance will never technically improve. Her hypotonia (poor tone) will always exist. So now we have to work on strength and conditioning to try to accommodate for what we can. Brian and I are thinking of perhaps getting Abby private, more intensive PT over the next couple of years. All we want is for her to be able to go on the playground with all the other kids at school but as of right now that is a long way away. It's hard as a parent. It's all so damn hard for her. To walk down a curb is tough. She can't walk in grass, or sand or water without falling. Her head is always covered in bruises. We are going to get her fitted for another type of helmet so she can play outside with getting a concussion. Needless to say PT is our roughest battle right now.

Occupational Therapy - Abby and Grace have the same OT, Nicole. Abby's OT needs are similar and dissimilar to Gracie. She also has SID but in a very different way. She, unlike Gracie, seeks "input" from more fine motor and oral based stimulation. She has problems with stuffing her mouth too much. He brain doesn't realize her mouth is full. She loves to play with things that are different textures. She LOVES to squish and squeeze things like soft food and play-dough for input. She also suffers from fairly severe ataxia. I stole this from wikipedia: "Ataxia is a neurological sign and symptom consisting of gross lack of coordination of muscle movements. Ataxia is a non-specific clinical manifestation implying dysfunction of parts of the nervous system that coordinate movement, such as the cerebellum." For her ataxia comes in the form of flapping, head rolling, tensing her muscles irregularly and other "odd" movements.

All in all Abby's OT goes well but the ataxia will never go away. Hopefully we will be able to change some of her ataxic behaviors so they look more "normal" by the time she goes to school. I'm thinking flapping is too easily labeled these days.

So we're plugging along. We have 4 therapy sessions a week in our house and countless hours of home therapy that I am taught by our therapists to provide. It isn't easy. In fact some days I downright hate it. It's stress for my kids. It's stress for me. I wish their little lives could be easier and filled with things other than various therapies and endless frustration. An excellent weekly reminder comes from our very dear OT Nicole. She has a son with special needs and a son that died from the same disease that afflicts her living son. She reminds me every week that my kids have never known any different. What looks to me like it hurts them like hell is all they have ever known. It makes them stronger and more persistent. I think she's right.

2 comments:

Nichole 10:11 AM  

Your girls are very strong and very brave (I think they get it from their mother!). Hang in there... Just you wait - someday your heart will absolutely melt when they tell you "Thank you for everything you've ever done for us"...

Christina 1:49 PM  

I loved your update. You guys are doing amazing things with those girls..and your PT sounds awesome. We've been blessed with a great OT and PT, who have been with us from the beginning.
I know things are hard for you..1-2x a week for us is tough, and sometimes feels like to much for me...you are doing awesome!! Don't ever forget that! *hugs*

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Over 8 years we have struggled through 3 IUI's, 6 rounds of IVF, several RE's, hundreds of appointments and the loss of three little angels. Now we find ourselves the proud parents of two perfect little girls and a wonderful little boy!!

Both of our girls struggle with some disabilities but that won't keep us down. Each day has it's own brand of insanity but we love it. Most days I am more monkey wrangler than mother but I do the best I can. Todays goal - getting to tomorrow.

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