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Posts Tagged ‘therapies’

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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I often think about the other parents. The ones who are in intensive care wards, or in the “bad news room” at the hospital awaiting results. The ones who are sitting next to incubators, who pray, who hope, who despair. We were them once.

I had so many questions then. Not medical questions – questions for my future self. And, I expected every answer would filled with more misery than the next.

Fast forward 2 1/2 years. How would I answer the questions of the woman I was?

Question from me 2009: Does life suck?

Answer from me 2011: No.

Question: But, surely it does and you are just covering it up to make me feel better.

Me: No, I’m not. Everything takes longer. I worry more about the future. I will never feel “grateful” for May’s brain damage. But, that doesn’t mean I hate my life. I love my life. I love my daughter.

Question: I know you are lying to me. What about her seizures? She has over 100 a day.

Me: They stopped. That was a major challenge, but we tried out various medications and got them down to almost non-existent.

Challenging, but not without its pleasures.

Question: Well, that sounds good, but she still can’t sit. Or, feed herself. Or, speak.

Me: Yes. I hate all that. But, I don’t let it eat away at me. I can’t. I focus on helping May become as independent as she can. I try to focus on what she can do rather than what she can’t.

Question: Oh, come on. Don’t you want to run-away or scream or anything but not have this be your life?

Me: My life has changed. It is definitely different than I imagined. But, the worst moments all happened when she was still at the hospital. After we left that behind, the only way was up. It never got that bad again. That’s the truth. When we were told of May’s injuries it was a blinding, desolation of my emotions I have never felt since.

Question: Are you sure you don’t wish every day that this never happened?

Me: I do. I would literally give of my body if it would cure her – anything to erase May’s injury and make her whole. It’s hard to watch her struggle to do what comes naturally to the rest of us. But, mainly I worry about her future when we aren’t around. But, here’s something to think about: almost everything I worry about, May doesn’t. She doesn’t even understand that there is anything wrong with her.

Question: But, you must look at her and know she will amount to nothing.

Me: I can’t wait for you to see everything May can do. Watch her Olympic level bouncing to see even a sliver of the joy she has brought into our lives. Society rates success on money and degrees and titles. And, okay, she won’t achieve those. But, how many of us can say that we made a member of our family smile every day?  Is that nothing?

Until you live with May every day, you will not understand how proud of her we are – how her most minor achievements astound us. It is simply not possible to love her more than we do.

There is much pleasure, love and silly songs in your future.

I really wish I had known that then.

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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Last night, in anticipation of the arrival of May’s glasses today, I asked to my husband, “Do you think the glasses will make a difference?”

“No,” he said, bluntly.

I made a kind of hmmm sound. The kind of sound wives make to husbands when a “no” isn’t quite a sufficiently long enough response.

He looked up at me, since I was still looking at him, thought better of it, and continued. “Noooo, but I hope.”

Like him, I can’t expect much more than that.

I picked up the glasses today, less than two weeks after doctors discovered she has an astigmatism. Just as you are, I saw her in them for the first time today. I hope hope hope this makes a difference. So, what do I think of them so far?

Hmmm. Very cute.

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Want May to win Best Special Needs Blog at Parents Magazine? The easiest way to vote is to register with your Facebook, Twitter or email account when prompted. May thanks you for your vote: Bounce!Bounce!Bounce!

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I shouldn’t get too excited. The Prof even told me not to get too excited. (Side Note: You know they are medical big wigs when… everyone calls them The Prof or The Boss.)

I took May into Morefields Eye Hospital this week to get her eyes checked. The doctor in charge of the Developmental Vision Clinic at Great Ormond Street recommended attending the clinic. She said they would be sympathetic to May’s developmental problems and not shrug off my attempts to improve her vision with a flippant “there is no point” comment like we’ve received in the past.

The Prof didn’t shrug me off. He was honest. That’s different.

May has an astigmatism. That’s a fairly common eye problem. This means May finds it difficult to see fine details, and things look blurry.

Wouldn’t it be amazing if that was, even partially, the trouble with her vision and glasses could correct it?

I know. I sound too excited. The Prof said it was unlikely that it would make a difference to May due to her brain injury, but in a child suffering solely from the astigmatism, it definitely would. The correction needed is significant. He thought it wouldn’t hurt to give it a try.

So, following the appointment, I chose an adorable pair of spectacles for my May. Said spectacles will make their world debut on this blog in about a week’s time!

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

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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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If I can't see it, I'll eat it!

I will remind everyone reading this that I’m not a doctor since I’m about to explain how vision develops in a baby. (Feel free to correct me.)

There are two aspects of vision: mechanical and cognitive. Mechanical is how the eye moves, focuses on things, etc. Cognitive is how the brain reads, identifies and remembers what you see.

The two are very different and yet they work in conjunction with one another. So, when May went to her first eye appointment (lots of fun, you can read here), the mechanics of her eye were fine, but the nerves that grow at the back of the eye and link the eye to the brain were not developing.

Why not? Because the brain received information from May’s eyes, but the parts that could read that information were, shall we say, unavailable. Children are not born with 20/20 vision. The develop their vision for the first five years of life, so if May’s brain can’t read what she sees, her vision as a whole is effected.

To go a step further, even though the mechanics of May’s eyes worked initially, in order to progress they needed her brain to be registering what they were seeing.

Does that make sense?

I condensed over a year of my own research into four short paragraphs so feel free to be confused. For further reading, I would suggest Cortical Visual Impairment by Christine Roman-Lantzy.

Indulge me for a moment.

This was the single most challenging issue to find any information about. It took me over a year just to find it. I asked every doctor I saw. Every single one, even the ones I respect the most, told me there was nothing I could do. Worse, they had no information to pass on to me. That is how little is known about visual development in babies, let alone brain damaged ones. Furthermore, later I discovered that some of the doctors knew about the Great Ormond Street Hospital Developmental Vision Clinic and didn’t suggest it to me. Once I found it, on my own, they were reluctant to refer me to it.

Why is this?

In every physical way, May has therapy. In every cognitive way, May has none.

Why is this?

I must not be the only parent who is desperate for information to help their brain damaged child develop cognitively. I don’t need to say how important vision is to development.

You can click on the Visual Development link in my right side bar to read about some of the things I’ve been doing with May to improve her vision. And, it is improving – just slowly.

Next month, May goes to the famous Moorfields Eye Hospital to have her vision evaluated (mechanically and cognitively) on the suggestion of the head of the Developmental Vision Clinic at Great Ormond Street Hospital. It would have happened earlier except I had a little issue getting there during the past month. That little issue being a new little baby.

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