Saturday, October 13, 2012

Successes Big and Small

After a long period of trial and error, the kids and I have finally settled into a weekly routine that works for us all. It feels very "normal" even though it includes four therapy sessions a week. Unfortunately as part of this strive for normality (and manageability) we had to cut out our weekly music therapy. While it was enjoyable for both of the kids it was really very supplemental and not necessary like the other therapies are. I do feel badly about it, especially since it was the one therapy that Calvin was able to participate in and he really liked the therapist. But ultimately cutting it is for the greater good of the whole family and it gives me a little more sanity.

These days we have therapy three mornings a week. One morning we have OT. Another morning we have Speech. And the third morning we have both PT and OT. Fortunately these last two sessions overlap a bit so they are not two completely different appointments.

Calvin comes with me to the OT and PT appointments. We watch these sessions through a one-way mirror (Juliana is typically perfectly content with her therapist and I feel very comfortable with their overall philosophy, so I am happy to sit outside the room as an observer. My presence would really distract her otherwise).

We've also been seeing our new speech therapist for about a month now. I was really dreading adding this therapy back to our schedule but so far it has turned out to be absolutely wonderful and very productive. Calvin doesn't attend these sessions as I think it's difficult to do speech with a sibling present. It's been decided that these mornings will be spent with Grandma and Grandpa, definitely a win-win for all of us.

This level of therapy is perfectly manageable right now. We still have two days a week where we don't have to be anywhere (perhaps not entirely true as we do still see an audiologist, an orthopedist, etc.)

So, how is Juliana doing will all this therapy? During our last speech session our therapist said that Juliana's feeding skills are at age-level. While this wasn't totally surprising to me, it was still pretty amazing to hear someone else say it! A year ago she was probably only eating a few ounces a day, and even just a month ago I was struggling to get her to accept certain textures. Now she is amazingly caught up with her peers. I no longer have to distract her to get her to eat, I no longer have to feed her myself. This is another sign of improved sensory processing. She is eating very few pureed foods these days, there are only a few instances where I feed her these foods mostly for my own convenience.

All of these feeding progress is great as it has made things easier on me. But what's even better is the clues that it is giving me into what's going on in her brain. I'm not a speech pathologist and obviously my expertise has been related to only one patient. But from all my research online and in conversations with therapists, it seems to safe that very often mishaps in the brain will manifest themselves in many different ways, feeding issues very often being one of them. A child who is not neurotypical may aspirate, gag, swallow food whole, may not chew properly, may have an extremely self-limited diet, may not be able to self-regulate food. A child with serious sensory issues usually is a child with serious eating issues. Juliana is moving past these issues at what is certainly a lightening fast pace. (And yes, I credit GAPS for this success).
Yet another picture of Juliana chowing down. Sausage patty this time.
Meanwhile the PT and OT are always commenting on how much stronger she is getting. They are in agreement that she pretty much has all of the skills and the strength to crawl. Now it is a matter of integrating it all together. Of course I am really excited for her to begin to crawl - not just because it is more efficient than rolling around the room but because it is so hugely integrating for the brain.

All of the therapists have noticed her fine motor skills. Sometimes her hands lack the strength to do something (light switches are still difficult for instance) but when it comes to other tasks she's quite adept. Case in point: she has enjoyed playing with Calvin's legos for some time now. She really tries to put two pieces together (admittedly difficult, I remember that even Calvin had a difficult time with this initially). She enjoys taking things apart piece by piece. She recently discovered that we have little hats and helmets for the lego men to wear and she loves putting these on their heads and taking them off again.

Admiring her creation.
I am so humbled by this. I'm amazed. I feel undeserving of all this success. I'm not the best therapy mom. I find it difficult to incorporate into our lives. I am a stickler when it comes to diet and when it comes to treating Juliana "normally" but in a lot of other ways I feel like a therapy failure. I write down all of the suggestions for our "homework" and I always have great aspirations but feel like we fail at many of them. Still, we must be doing something right. Fortunately success spurs me forward and I feel like we've been getting in a little more therapy lately.

 What else is in store for Juliana? It truly seems that the sky is the limit. Next up? Crawling.

Sunday, October 7, 2012

31 for 21: Down Syndrome

If you have a child with different needs then you may very well already know that October is Down Syndrome awareness month (during October many bloggers blog daily - 31 days - for Down syndrome - Trisomy 21). Juliana doesn't have Down syndrome, obviously. But there was a time that I wished she did. There's a whole different layer of complexity when your child does not have a diagnosis and there was a time when I longed for answers and support from other parents. Fortunately we have all of that now.

Sometimes I pause to think about the parents out there who have just received a diagnosis. Maybe it's a prenatal diagnosis. Maybe it came as soon as the baby was born. Maybe it came months later. There are certainly difficulties within each of these scenarios. I know that it's easy to feel hopeless, to feel like a failure, to feel like you as the parent are personally responsible. All of these feelings will diminish with time.

So why am I doing a 31 for 21 post? Because I wanted to share this incredible video with you. Heath White was a man driven to perfectionism. He later had a daughter with Down syndrome. He wanted his wife to have an abortion but she refused. His daughter turned his world upside down and he's all the better for it. This is a really beautiful story, enjoy:

This is the type of awareness that I'm all for. I don't really care much for most "awareness" type things - I personally don't see a lot of value in awareness alone. Webster defines awareness as "having or showing realization, perception, or knowledge." Personally, I don't care if anyone beyond my circle of support has knowledge of Kabuki syndrome. What I do think is needed is appreciation for people who face different struggles. I also hope that people will learn that having a child with a disability is far from the worse thing that can happen to you. Let's appreciate people for who they are, even if they are different. I promise that we will truly all be better for it.