Archive for the ‘Physio’ 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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We’ve gone private. I never thought we’d ever do that. Honestly. Because I believe in the NHS. Despite May being born in the care of the NHS and feeling that the birth went wrong, I still believe that she is seen by some of the best medical professionals in the world.

Unfortunately, physiotherapy is not one of those areas. Originally, I was satisfied with the physio. Yes, I had my issues. But, I voiced them, and I felt they were seen to. Then came the crushing realization that May deserves better.

I don’t use the word “crushing” lightly. That’s how it feels. May deserves something, anything more than a physiotherapist who is reluctant to touch her.

Which leads me to the embarrassing, humiliating and, again, crushing experience of meeting May’s new private physio. That I felt these things is not her fault. It was the combination of seeing how beneficial she would be for May and having to justify the physiotherapy May has received so far.

These were the completely LAME answers I had to give. (SIDE NOTE: When will I become a good liar? Much less embarrassing.)

Her: How often does she have physio? Once, twice a week?

Me: Er, once a month? Maybe?

Her: And, what happens during these sessions? What does she do with May?

Me: Um, she’s kind of hands off.

Her: “Hands off?”

It was a statement rather than a question. A statement of total disbelief and disgust mixed with horror.

Hindsight is a brutal thing. I would give anything to go back and give May the physio she really needed over the past year. What a crucial year it was and now is lost.

Here’s what really gets me. Both May’s previous physios explained to me that physiotherapy was something they would instruct me to do with May. In other words, they would assess her needs and I would deliver it. When they explained this, there would always be this moment at the end of the conversation where they would say something like, “You do understand that right? Because some parents think it is our job to do the physio, or to come every week. And we just can’t do that. That is where you come in.”

And, I would nod.

But, now I see they were pushing that concept on me. Because it isn’t black and white – as in, the only options are 1) they do all the physio – unreasonable, or 2) they instruct and I do it – reasonable. There is a third option, where the physiotherapist works with us once a week, notes May’s progression, stretches her and does activities with her and THEN I try my best, in my untrained but motivated mama way, to replicate a small part of what she has done throughout the rest of the week.

That is what works. The only reason it wouldn’t be the case is either 1) laziness, 2) lack of resources or 3) lack of imagination.

As evidence that there are other things, new, simple things (that is the horrifying bit – how simple these things are) that we can do with May to help her progress:

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

VOTE for May and Mama! We are nominated for Best Special Needs Blog at Parents Magazine!

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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 has a physiotherapist. She is a member of May’s community team, so we don’t pay any additional money for her and she works alongside everyone else who works with May. She is professional and organized and I should feel like she is enough, but I don’t.

She isn’t just May’s physio. She is also May’s key worker, meaning she organizes new equipment or referrals if we need them. If I have a problem with funding or with a member of the team, she takes care of it.

But, she isn’t just May’s key worker. She is also the person at the center who measures and orders the lycra suits for all the children who need them, including May.

That’s a lot of stuff. And, I worry that in between all that, the physio itself gets a raw deal. She sees May with some frequency, say once every three weeks, but during this meeting often it is the administrative end of May’s care that is the priority.

May does the same daily stretches she did when she was a baby. That’s not necessarily the wrong thing since the stretches are about keeping May’s full range of movement as she doesn’t move very much or in the manner a two-year old should.

Are they helping? I don’t know. I know that May has a good range of movement for a child such as herself. So, yes, I suppose they are.

Is she progressing? Not sure. Her progress is very slow. I don’t like creating lists of what May can’t do, however there are some things I thought physio could have achieved. For example, May still pulls her arms in towards her chest or hyper-extends them. She delivers few relaxed, deliberate arm movements. Yet, she does thrust her arms forward to hit a toy. This implies to me that she does understand that her arms can be used to manipulate an object, even if her movement is clumsy.

Shouldn’t physio play a role in improving this?

It is disheartening to do the same stretches, songs and activities over and over again for two years in the hopes of stimulating independent movement and not help May achieve it.

On the other hand, maybe the progress  and range of movement May has is really amazing for her skill set. Maybe I should be thinking about further progress along the lines of what she is realistically capable of.

I don’t believe in the “It can’t hurt” philosophy. If it doesn’t work, we waste money, but the time with May is even more precious. If it is unproductive, if we could have enjoyed that time together and instead I forced her to do all kinds of nonsense, it will hurt.

My question for you readers in the know:

Should I invest in additional physio for May? And, if so, what kind?

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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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Two incredible things happened this week that reaffirmed my faith in medical professionals.

May had a major meeting on Tuesday. I phoned May’s physio in advance to talk me down from my heights of anxiety. I didn’t sob or bite my fingernails to the quick. It was more like I was channelling Woody Allen.

There was a lot of pleading and jokes at my expense, created by me. I begged her not to let me hear a phrase such as, “May has the mind of a 2-month old, in the body of a six-month old!” Hooray!

May’s physio is reassuringly self-assured. She also indulges my manic nature, somehow managing the feat of laughing with me as opposed to at me. She chuckled and said, “Don’t worry, Stacie. That’s not going to happen. It’s not that kind of meeting.”

And, she was right! Instead, the neurologist on May’s team asked my husband and I what our concerns were and how we felt May was doing. And, no one was negative at all. Everyone was pleased with May’s progress. The neurologist, a sprightly Irish woman, said, “Oh, she is turning into a little lady!” Which obviously delighted me, as all references to how adorable my daughter is do.

She also went so far as to email the Boss and relay our concerns about May’s seizures and medications, and in an amazing feat of medical chumminess, he responded to her that evening!

As if those achievements weren’t enough, today the Developmental Vision Clinic at Great Ormond Street phoned me. There’d been a cancellation, and would May like an appointment 10 days from now?

Yes, yes, yes!

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Let the jet lag begin.

We are back in London. Our flight was fairly uneventful, save May projectile vomiting an entire bottle of milk into the aisle, and me showing more signs of foot in mouth disease.

Two lovely air hostesses approached me on the plane to see if I needed anything. May ceased bouncing momentarily as she had the shakes.

One hostess said in a cutsie baby voice, “Oh! Poor thing do you have the hiccups?” and then when it reverberated on May’s face in tiny, repetitive spasms, she asked me, “Is she cold?”

“No,” I said, “she is having a seizure.” Nice work Mama. It just came out. Of course, they didn’t know what to say. Thankfully, they weren’t scared off and instead checked on me several times during the flight, bringing me cups of tea and telling me what a good mother I was.

On the flight I played a lot of hand games with May, something I have been increasingly doing since the physio suggested ‘Row Row Row Your Boat’ a couple of weeks back. I try to sit May for most songs now and use her hands and arms to lean forward to pat her knees or touch the ground side to side. In all cases, I support May to hold her own weight into her arms.

She is improving and can now hold the side to side position for several seconds. I think sitting and using these positions is also helping her become more mobile in her arms and hands. She seems to push against me more, either to initiate a bounce or to move in a particular direction.

But, as usual, I’m not sure if it is all in my head or not. It is a pretty subtle change and I’ll have to wait to see if she shows more visible improvements.

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