Archive for the ‘Lycra (Supergirl) Suit’ Category

Monday – Music Therapy and Speech and Language Therapy

Tuesday – nada

Wednesday – Physio

Thursday – nada

Friday – Physio and Hydrotherapy

Maybe that doesn’t sound like a lot to you. Maybe you are thinking, “Isn’t Stacie on maternity leave? She can fit that all in.” Or, “An hour or two a day, every other day isn’t much for May.”

So also, please consider the monthly visits by May’s community therapists (OT, Physio, SALT)? And Small Steps School?

Not to mention each of these people give May and I homework and that homework takes hours in itself.

At what point is May doing too much? Let me rephrase that. May is doing too much. I’ve already removed her from Small Steps – which was a hard decision months in the making. Everyone at Small Steps was a huge support to us. Why did I do it? Several reasons:

1. May couldn’t do three therapies on Fridays. Even I know that is too much for a toddler.

2. Small Steps is the furthest away and the longest session (2 1/2 hours) so it would take that much more out of May than the other therapies.

3. I can’t handle it.

That’s the truth. I can’t handle day-in-day-out of meetings with specialists that I know can help May – or, worse meetings where I know they won’t help May. Meeting after meeting where well-meaning people sit down with me and we discuss how disabled my daughter is. How she needs standing frames and future wheelchairs and hoists to get her out of bed. How she needs splinting and lycra suiting. How she needs to try chewing with solids, sipping from cups, assisted standing. How we must do for her what she can not like brush her teeth, dress her, hold her chin so she can chew better. How when we dress or bath her we must support her in ways so that she can support herself and encourage her to reach.

I struggle to see, not only how I can physically do all the above x 10 in one 24-hour period, but also bear the weight of the constant voice in my head, “May can’t. May can’t. May can’t. You must.”

I have a splitting headache.

Here’s my final thought. Every time one of them comes to my house and sees my May-bell in her Bumbo seat, they say, “As May’s physio/OT/bum off the street, I have to tell you that May really shouldn’t sit in that chair/She’s too big for it/She’s going to fall over/Shouldn’t push back like that it’s a bad habit.”

Here is a question for them: Do you see her smile?

How can I take away her Bumbo? No one has suggested another means of letting her experience independence. This is the only time she spends on her own, entertaining herself all day.

Every meeting opens up new questions. What I want is answers.

You can read more from Stacie over at BabyCenter.


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Parents of special needs children: Do you feel too encouraged? Do your toddler’s exercises look remarkably similar to the ones you learned when she was three weeks old? Do you appreciate reams of paperwork and target setting?

Well then, please join us! Welcome to the World of the So-Called Experts!

Today, I met with May’s physiotherapist after weeks of worries weighing on my mind. Here were my concerns:

  1. May’s exercises have remained virtually unchanged since birth.
  2. Her physio doesn’t do any physio sessions, or hands on work herself. She instructs me and the nursery and we do it. I don’t mind this in theory – but the result has been that she never touches May ever.
  3. I have no sense as to whether May is progressing well considering her injury, or poorly. No sense. At all.

Last week, when I posed my concerns to her (with a lot less detail and quite a lot less negativity), she proposed that we discuss it on a day when May attends nursery so there would be fewer distractions.

I can’t be the only person who thinks that it is irresponsible to formulate a new plan of therapy for May without her present. Not to mention that it just sounded like another excuse not touch May. I replied expressing this concern and we arranged a time when May could attend.

I should have left her at nursery. Much like every other meeting we’ve had, she shied away from touching May. I had to ask her, about 40 minutes in, to feel the tone in May’s legs and shoulders. As she felt May’s shoulders, she said, “You know? You’re right. She is quite stiff here.”

May’s shoulders have been the area with the highest tone since she was born. How is it that she didn’t know this?

But, the worst moment for me came when she took out a targeting sheet. Under a section labelled “Two Years Old” there were five categories, each progressively worse than the next. Without any warning, she pointed to the worst of the categories and said that’s what she would label May. “But,” she added, “on some days, she seems better in some areas than this.”

Thanks. I feel a world better now.

“Why are you showing this to me?” I asked.

“As a way of explaining how I set my targets for May. You don’t have to use it yourself. I use it to see where we go from here.” As if that is an excuse. First of all, five sentences is not enough to articulate properly the level of my daughter’s physical abilities. Secondly, how can five sentences guide anyone in determining “where we go from here”?

What of actually touching the child, stretching her, standing her up to see how she is progressing physically? When does that happen? (Apparently, at the end of September, as she showed me on her pre-prepared planning chart five minutes later.)

I handed back her useless, target sheet. “Well, it may be useful for you,” I said grimly, “but for me, it is just depressing. So, I wouldn’t use it.”

I’m actually angry at myself. How is it that I let this woman determine May’s physiotherapy for so long?

So, here is my physio plan for May:

1. Hire someone privately for May to see her on a weekly basis. Someone who will remember what her tone is and apply herself to finding effective ways to improving it.

2. Allow the current physio to stay on (although I have already shifted her administrative duties on to someone else – originally because I thought she just needed more time to focus on May’s physio needs) in order to fit May for a new lycra suit and standing frame.

3. All the above, until May starts at a special school, probably in January, where her physio needs will be transferred to someone new, at the school.

Want to read more from Stacie?¬†Check out her posts on BabyCenter’s Momformation!

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May and I celebrated BabyCenter’s Big Day Out by getting out in the sunshine and not prepping for the baby – due next week – at all.

Yep. I haven’t prepped at all. But really, what do you need besides some diapers, a couple of onesies and some just-in-case-breastfeeding-doesn’t-work formula? Right? Surely babies can shop for themselves. (Suggestions from readers very welcome.)

Besides, who wants to prep for anything when London is in the midst of a heat wave. Perfect for toddlers and mamas who like to sunbathe.

Besides enjoying some glorious weather, going outside is excellent stimulation for May. The sun warms her skin. The wind plays with her hair. The birds sing to her. The grass tickles her.

It is always easier to stay at home with a disabled child. Everything is there! But, if May is any proof, going out provides all kinds of wonderful stimuli for her to enjoy. None of which I can offer her in my flat.

On May’s Big Day Out, she practised pushing herself up on her arms in the grass. She’s much better at this, mainly down to her supergirl lycra suit, of which she was fitted for her third today. All her measurements have gone up! Wonderful news for the little girl who spent an entire year at about the same weight and suddenly, in the last few months, had quite a growth spurt.

1-2-3 and...

...up we go!

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May has conquered the Everest of the baby seat world THE BUMBO.

For those unfamiliar with The Bumbo Seat, it is one that babies can sit upright in as soon as they can support their own neck. The seat is made of a kind of firm foam that cushions and supports. The seat secures the baby’s legs, hips and lower back, leaving the upper back, arms and head free.

What the Bumbo manufacturers didn’t realize was that their design was actually a vehicle for kicking your legs and bouncing forwards and backwards (the point of the seat is that it won’t topple).

It took a long time for May to feel comfortable using the Bumbo. Archie’s grandma, Jill, our friends from Small Steps, encouraged me to drag it out from the depths of our closet and put May in it for just a few minutes once a day. At first, a few minutes was even difficult. But, over the course of a couple of months, and with the strength in posture her Supergirl Suit brings, May learned to love it.

Here’s the other thing I love about it… this is one more step towards independence. There is very little May can do on her own, and this is one.

Our resident Supremo Cute-o demonstrates below.

It can be hard to find toys for special needs kiddies. If you are interested, I posted about other toys May loves on BabyCenter this week. 

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the gift of sitting without support!

Normally, I would go into a long explanation of what led to sitting. But, in honor of the Christmas spirit, I will explain it off as a miracle of Christmas! (and stronger arms, better balance – from better vision, a year of stretching, one Supergirl Suit, an amazing nursery, devoted team, not to mention encouragement from Daddy and Mama!)

Without a doubt, this is the best Christmas gift May could have given us.

Children are astounding and, excuse my bias here, children like May even more so. If you are a parent new to this business, still reeling from a diagnosis or visiting your baby in the Special Care ward this holiday season – take heart!

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Behold! May the Superhero Princess!

This week, a new weapon in her cuteness arsenal – her Supergirl Suit.

May’s lycra suit is made to measure and fits like a glove. May has to be zipped into it at six points: front, back and both arms and legs. Once inside, I challenge you not to think she looks like a contender in the Tour de France only, of course, much much cuter.

The suit is meant to help her in two ways. First, it will give her added support. Two different materials are used, one with a greater give than the other. Along her back, for example, the white lycra is stiffer than the pink, to support better posture. Second, as it acts like a second skin, it is meant to increase her sensory awareness of her own body.

May’s physio instructed us to trial May in the suit for a couple of hours a day, building it up over time until she wears it all her waking hours. While I nodded in agreement at the physio, inside my head I already had May wearing the suit 24/7.

Like many things in this world, I was wrong about that one. It was very obvious from Day One that May would only be able to handle the suit in short intervals. At first, she found it unnerving. She didn’t want to be put down while wearing it. She didn’t like being held in certain positions.

By today, almost a week on, May can wear it twice a day for two hours each. I believe her sensitivity is encouraging.

In May’s first weeks, she lived in an incubator in the Special Care Baby Unit. We could not hold her, so would gently stroke her through an opening in the side. As we ran a finger along her cheek or against the soft skin of her stomach, she would tremble from the over-stimulation.

We were warned to expect this, but rather than be put off, I continued. After her release, May would be held, kissed and bounced, and to do that she needed first to tolerate being stroked. Luckily, my hypothesis was correct. The more we stroked May, the less she trembled.

The suit will do what we can not: stroke May all day long. If the first days are any indication, it will have as positive an effect as we did.

If you can handle the supersonic snorting noises in the video below, you will be rewarded with May propping herself up with her arms. An amazing achievement!

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