Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘hypotonia

Spirit

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Last week was Spirit Week at Pudding’s school.  Each day, the pupils were allowed to dress up according to a certain theme.  I was looking forward to this, because last year Pudding had loved spirit week, and I was sure she would again.  But you probably know by now, dear reader, what happens when I’m certain of something.Image

This first day was pyjama day.  She absolutely was not going to wear her nightgown.  She would get dressed for school.  Alternative pyjamas and nightgowns were presented, but it wasn’t going to happen.  In the end, I dressed her in leggings and a t-shirt (which looked like night clothes) and sent some more options in her bag.

The next day was Topsy Turvy Tuesday (mismatch day) and I helped her to dress “wrong.”  She looked adorable, but it turns out that dressing wrong meant that she felt wrong.  All day long.

After Pudding’s worst two days of the school year, we decided to abandon Spirit Week for this year.

I don’t know why it was easy for her last year, but hard for her now.  I do know that she likes to decide what to wear, and she feels in no way compelled to do something just because everyone else is.  I also know I’m now glad she doesn’t have to wear a school uniform, because if there is one thing this kid isn’t, that would be uniform.

Of course, most kids love these days.  The whole point is to build a sense of solidarity and community.  The students can express themselves and feel like they belong at the same time.  I wonder, as she gets older, will the desire to conform become greater that the need to be her own person.

Pudding’s school means to be truly inclusive.  They don’t just want her to be in the classroom, she needs to fully belong and be part of the class, goals I want for her too.  But sometimes I wonder how much she wants that.

On Friday we had Pudding’s ILP (Individual Learning Plan) meeting.  The year has been going well, but there are some areas causing Pudding problems.  She struggles to pay attention to her math work, she is overwhelmed on unstructured days, and then there is physical education.

Pudding does not like PE.  That was a grand example of an understatement.  PE is impossible for her.  Her body doesn’t cooperate with her brain.  Her muscles tire far quicker than they do for other kids.  These additional challenges merit the addition of Developmental Motor Coordination Disorder diagnosis, in addition to her autism.  She doesn’t understand the rules of games, nor is she intrinsically motivated by playing them.  Not only must she absorb and process the movements, speed, noise, and feel of other kids rushing around her, but she is supposed to get her own body to do these same things, for reasons that are obscure to her.

The solution so far is that Pudding has had one-on-one time for the duration of PE, but this is no longer workable for her teachers who have planning meetings scheduled for the same time.  So parents, teachers, therapist, and principal, we all got together to brainstorm supports and accommodations to help her to take part.  We came up with some ideas to try, because all of us in the room were motivated to make sure she felt like she belongs, and has the school experience that every child is entitled to.

But the first step is always going to be to make sure that Pudding herself is opting in, that she actually wants to belong.  What seems right to us might just be Topsy Turvy to her.  It doesn’t really matter how weak or uncoordinated her body is, her spirit is incredibly strong.  And we celebrate that unique spirit by listening to what it has to tell us, even if it isn’t what we want to hear.

Written by Spectrummy Mummy

October 14, 2013 at 1:35 pm

Dummy

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“When you know better, you do better.” – Maya Angelou.

Not me, wise Maya.  Not me.  But I do make new mistakes in different ways.  And I do believe entirely in making mistakes.

When I was that insanely annoying woman who thought she knew best about parenting (before actual motherhood taught me all I needed to learn) I knew I wouldn’t let Pudding have a dummy (pacifier). Then more information came out about how dummies actually helped reduce the risk of S.I.D.S and I quickly changed my stance.  We would have pacifiers, but would give them up before long.

I admit to being a bit of a dummy back then.  I never picked up on how soothing a pacifier was to Pudding.  Oh, I knew that it could help stop the screaming when I couldn’t figure out what caused the screaming, but I didn’t see her intense need for oral-motor stimulation.

I stopped Pudding having her dummy at just after 18 months old.  Pudding gave up the pacifier without any difficulty, and I’m sure I congratulated myself well for it at the time.  I certainly didn’t respect how much more difficult it would make things for a child with intense needs and difficulty communicating.

 She began looking for other things to put in her mouth: crayons, play dough, anything she could find really. Pudding had pica, a disorder causing her to eat non-edible items.  We were lucky that she never did herself any serious harm, though I made more phone calls to poison control than I’d have liked.  That oral-motor sensory-seeking continues to this day, though more often than not she can be persuaded to bite on chewelry.

So the second time around, when I knew better, I did better.  I would avoid the dangers of pica and compulsively mouthing non-food items by allowing Cubby his pacifier as long as he needed it.  And he needed it.  Unlike Pudding, whose sensory system was under-responsive in her early years, Cubby was born sensitive and anxious.

He lived with a pacifier in his mouth.  I struggled to persuade him to use it just for sleeping, and from a very early age, he would hide them around the house.  Pudding took it upon herself as a sisterly duty to ensure that there was a dummy in his mouth at all times.  In fairness, his crying distressed her greatly, so consoling him would be soothing for her too.

Cubby has never experienced the pragmatic language delays that impair Pudding’s verbal communication, but as time has passed, I’ve noticed that it is increasingly difficult for others to understand him.  During OT we’d work on his oral-motor strength with blowing and sucking activities, but his low muscle tone seemed as pronounced as ever.

On to his third birthday party, where he didn’t have the strength to blow out his own birthday candles.  I made an appointment for a Speech and Language Assessment.  Now, only part of his articulation difficulties are directly caused by the pacifier, but using the dummy has certainly contributed.  With tongue thrust, swallowing difficulties and weakness of the orofacial muscles, it became clear that intensive efforts would be needed to help with his articulation.  The dummy had to go- immediately, and speech therapy sessions twice a week are the order of the day.

Cubby didn’t give it up quite so easily as his big sister, but he hasn’t made mention of his dummy in a few days.  I’m confident throwing them all out once and for all.  It is interesting sitting through another set of speech therapy sessions with another child, and working on completely different problems.

I’ve chastised myself for my leniency with the pacifier this time, just as I berated myself for the strictness that contributed to Pudding’s pica and sensory seeking.  But really, even the wisdom of Ms. Angelou wouldn’t help here.

When it comes to raising kids with different needs, when you know different, you do different.  Whether the outcome is the same or completely different, trying doesn’t make you a dummy, which is good, because we don’t need any more of those in our house.

Written by Spectrummy Mummy

April 23, 2012 at 2:07 pm

Wordless Wednesday 04 Apr 12

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Blowing out candles is harder than you think with low muscle tone.

Good job he only had three this year!

Written by Spectrummy Mummy

April 4, 2012 at 12:20 pm