Wednesday, 11 December 2013

So where are we now?

December! How did that happen?

Well, things are rocking along here. Jacinta's still doing just fine. Maria had a go at treating Broca's area and Wernicke's area (the areas in the brain named after these two fellows, which relate to speech input and output). Since we started that she's been chatting up a storm, which is ace. Not to say that she was short of topics before but hey, she's my daughter, what can I say?

And we're now at a bit of a crossroads. I am finally getting organised on the home front. The house is clean more often than it is messy, which is a first. The washing is normally up to date. The big girls' room has had a number done on it, loads of soft toys evicted and a minimalist look now in the decor which means it gets tidied every night and never more will we be searching for a clean patch of floor in there. (Well, until they get old enough to demand the right to clean it themselves and absolute privacy...)

I'm getting fitter because I've joined my friend's team for the Oxfam 100km walk for next May - I know, I'm a lunatic. My husband seems to be finally getting on top of his body issues and the seizures and migraines are few and far between. We seem to be climbing out of the general disarray we've been in for the last 18 months. This means that we've been able to do some of the IAHP program with Jacinta. It's been patchy and we're trying it on for size a bit, but it's happening. She's getting pretty strong and dying to take off but not quite moving forward yet. I'm keen to do the home program with IAHP but we have to take an overseas trip in April and Jacinta is still meant to be sleeping 4 hours a day plus we're trying to transition to solids - this doesn't leave much time to do 3 hours of therapy each morning!

So I've been entertaining the physio twice a month. She comes over and does some things to show Jacinta things that are steps between being on her tummy and crawling. It's a bit odd though, that they're doing all these things and not just encouraging commando crawling. It seems like pulling someone up by marionette strings to get them to walk rather than letting them work it out themselves. It seems to me that if you do some patterning to show them the basic crawling manoeuvre and give them a track to crawl on, making conditions as ideal as possible, commando crawling will happen. This will strengthen their core muscles and arms and shoulders and quads which are the crawling muscles. (When I say crawling I mean American creeping. Commando = American crawling)

Anyway, she comes and gets all excited about how well Jacinta's doing at developing very nicely on her own as though it somehow has to do with the physio. She plays the children one at a time as though they're her own patients and has them doing things as though they're circus animals, and doesn't stop her own agenda to watch the thing that they want to show her and grant that importance. Generally I find her attitude towards children quite rude. From Jacinta's responses I get the impression that she doesn't like her attitude either.

She was over a week ago and we were talking about what to do and where to go from here. The service I'm with is a government funded service and we have a certain amount of funds to use for early intervention. She and the social worker lady (who doesn't have much to do on our case but co-ordinate)  were asking what we wanted to do for therapy. It was as though I was having to say whether or not we keep going with physio. I have no idea what they normally do, so I asked them what they normally do. The physio told me that they normally have a goal in mind and they achieve that and then the physio steps back and the speech pathologist or occupational therapist comes in to do some.

We agreed on a goal of 'moving forwards', which Jacinta's nearly reached. The physio was talking about speech pathology being next and I mentioned in passing, since I'd been talking about doing IAHP next year with no special reactions, that we had been treating speech areas with NAET and we'd seen some good improvements. The social worker didn't have any info on NAET and asked what it is. I gave her a brief synopsis of how it works, how I found it and how I've found it useful on various members of the family.

What happened next was very interesting. The physio basically said, "You don't need to justify or explain it to me. These changes in speech are what you would expect from the work we've been doing physically and could just as likely be attributed to the physio." (Bear in mind that what the physio does once a fortnight is done once a fortnight and not in between.) "Whether I agree with it or not (and I don't agree with it) I just continue to do as I do and you can keep doing that. It's not hurting anyone. If it makes you feel like you're helping then you should just keep doing it. I have other families who spend thousands on supplements and it makes them feel like they're helping their child and I just let them do it and keep on doing what I'm doing."

I was slightly stunned. I was listening to all this wondering if she could hear what she was saying and if she realised that she was speaking her thoughts out loud. Confrontation is my least favourite thing, especially since I take time to process things which are stated arrogantly as though iron-clad truth when actually quite full of holes and when the speaker makes out that I'm stupid and we all know that. I don't remember anything else much from the meeting after that, but I decided once they'd gone that the physio has to go.

I've been in two minds about her anyway, since I don't really do what she shows me and I don't like the way she treats the children. (Which, to be fair, is not mean or harsh in any way, but it shows that she doesn't respect their intelligence.) I just can't have someone in the house who thinks that way about me. I can't sit there and even pretend to be listening to what she says when I know she's looking at me and thinking what she's thinking.

So I guess come Christmas it'll be time to get this program happening properly, every day. We're nearly set up to get it going. I've come to realise that I have to make myself a strict homebody, at least in the mornings. We're still not 100% on the diet but we're consistently better and they did say to get it in on a gradient. It's a small gradient, but it's happening. The home environment is better. Things are improving bit by bit.

The thing that people are noticing most at the moment is Jacinta's size. She presents like a much younger child. It's actually interesting that people love her and comment on how beautiful she is, then ask how old she is and are a little surprised that she's nearly 1 (!).  I usually attribute it to the heart condition which, to be fair, did inhibit her growth up until about 4-5 months. The other factor that people won't realise is that my eldest was also very petite as a small child. She was always getting comments that she was tiny because she was on the small side. I remember comparing my health centre book with hers to calm myself down after comparing her to the percentile charts. I must pull mine out for interest's sake. I think with all the factors in, it's not a concern.

There has only been one time in her whole life where Jacinta was openly picked as having Trisomy 21 out in public. Recently my husband and I were killing time out at a cafe and two ladies saw Jacinta and asked how old she was. Then one asked "how is she going, developmentally?". I should have triggered, because people don't just ask that, but I gave the usual, "Pretty good - she had some health issues at the start, but she's catching up...". Then the lady said, "there's our two over there". I looked at the table over the other side of us and there were two women in their late '20s. They looked over and said 'hi' and I saw the features of Trisomy 21 on their faces.

These women were well dressed, well spoken and very sociable. They came over as sociable women do with babies and said 'hello' to Jacinta. Their Mums said that they'd just had a swim meet, that they both swam competitively, that they both ski as well and that this year they'd been to several countries and had been many places in the world to compete in sports. The daughters told me about what they did for a living and the travel they'd been doing and were chatting about how difficult it was in Italy trying to stay off the gluten! (I can relate...)

They asked about what we were doing for her in terms of a program. I gave a basic outline and they were glad that we were going for it. The Mum we spoke to first said that the main thing she tells everyone she meets is that you just keep your expectations normal. You don't aim low. You can always adjust them but keep your aims high until you know otherwise. She had many practitioners tell her things were impossible and she would always ask them to prove it. Her daughter went to an exclusive girls' school from Prep to Year 10 with no aide. She kept up with her siblings and was expected to. She told us to keep aiming high. She also gave us her details in case we wanted to ask questions.

This was the most refreshing meeting I'd had in ages. These ladies were 27 years old. Imagine the possibilities for Jacinta!!!

Things are exciting, even though every day Jacinta looks less and less to me like there's anything amiss in her chromosomes and it's easy to get complacent.

Watch this space.
(I have so many photos to upload. I promise, next time!!)

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