Archive for the ‘So-called experts’ Category

Here’s a question. How is it that a father of a severely disabled child – a father who sees therapists traipse in and out of his house, who changes his son’s diaper even after he is a toddler, who knows his son will never achieve the same basic level of functioning life skills as other children – how can that father allow the country he is in charge of to cast aside children like his own son?

But, that is exactly what David Cameron, the Prime Minister of Britain has done. By not ring-fencing community funds for the disabled, he has allowed councils to shave off the funding for the most vulnerable children in society.

What kind of financial sense does it make to remove the people and equipment who will allow children like May to learn the skills to become independent?

No, David Cameron – you are right – much better to allow them to grow completely dependent on the State for the rest of their lives. That will be real cheap.

Jess Moxham, a parent familiar to the comment section on Mama Lewis, wrote a superb piece in The Guardian this week on this very issue. Her son, Sam, attends Small Steps School like May did.

Small Steps are still desperately looking for a new space to house the school as Wandsworth council are evicting them – and all the children who benefit from the service – in December. There is no other charity supporting families like our in the whole of London. I know a family that drives two-hours there and back to give their son the benefit of the team’s expertise.

Congratulations David Cameron. All hail the Big Society.

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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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You know why I love social services so much? Because working with them is an adventure; I never know what to expect next. What fun! Plus, I get to really focus on what May can’t do. That’s something I love doing.

Today, a social worker called to confirm an appointment. Her call was the first I heard of it. Today. An appointment at 3.00 today.

I couldn’t figure out what this appointment could be for. Then, I had a sudden realization, “Wait! Is this about respite care for May?”

Turns out it was. So, I said I was free.

The information the social worker collects goes to a panel later this week. There some people, as always strangers who have never met May, will decide exactly how many hours of help we need assistance with, based on a report compiled after our 40 minute meeting.

It doesn’t instill you with much confidence does it?

Me neither. And, given our previous experience with Social Services, I expected the worst. I was actually nervous. While Ieuan took a nap, I went outside and paced in the sunshine creating a list in my mind of reasons we need respite care. Newborn baby. May’s increasing heaviness. Not enough time to do basic stretches. Need someone to assist for the safety of both children while I’m concentrating on one. That I want just one cup of tea without being interrupted. Just one.

Is that too much to ask?

Here is where this post turns bizarre. I LIKED the social worker. I don’t think she’d be for everyone with her blunt mannerisms, dark sense of humor and business-like professionalism, but that is exactly what I want in a social worker. I want someone who will say, “On the form it asks about communication. I’m just going to write, ‘none’ and fill in the rest on your behalf later using the medical reports.”

Hello? What? Honest, to the point and helpful all at once? A social worker entered my home and had already read May’s case history. She did not ask me a single thing about the birth. She had handwritten notes on May’s reports. I didn’t need to explain anything except where she didn’t know what to say without asking me.

I thanked her. Repeatedly.

She acted like it was all part of the job. She doesn’t realize how rare it is that people do their job.

From her chair, one which reclined comfortably and she said she may never leave, the social worker snorted a chuckle. “It says here, ‘Did you meet with the applicant alone?’ as if May and I would arrange to meet!”

“Next time, I’ll leave you two be,” I said, “and you can meet for coffee.”

She chuckled again. This woman, with her notes and strong demeanor is what I have been fearing for so long. Good news for once from the department that trains the so-called experts.

We should find out in the next week what kind of respite comes from the report.

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

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Well, what of their families then?

Cuts to local councils make our lives ever more challenging. Here is a simple story to help illustrate this. One, I think, even Tory ministers can understand.

Several months ago, we applied for a disabled parking spot to be placed outside our flat. Our road is one of the few ones near the shops that isn’t permit parking only. It crowds very quickly with cars.

May is 2 1/2 now. She is heavy and can’t support her own weight. Most days, I have to park far down the road and carry her across the street and into our house. Along the way, I have to fiddle in my bag for the keys, open the door and climb a couple of flights of stairs, all while holding her.

We received a letter about a month after we applied saying that due to financial constraints, they wouldn’t be able to investigate our request until September and put in the space before December.

That was bad enough. Today I opened a new letter. It’s worse:

Unfortunately due to the delays caused by the financial diffculties the Council has recently faced the estimated timeframe for the installation of your Disabled Parking Place has had to be adjusted… we are due to begin work on this batch in December 2011… it takes a minimum of 3 months to introduce a Disabled Parking Place and we estimate that the eariliest date the installation of the Diasbled Parking Place you have applied for shall be March 2012.

Almost a year before someone paints some lines on the road outside our house?

And, that’s the “earliest” that Lambeth imagine this issue will be resolved. May will be three years old then, and heavy. She is completely disabled. She can’t even throw an arm over my shoulders. How long before it is completely unfeasible for a small woman such as myself to carry her down the road? Do we have to be completely housebound before someone in Lambeth or the government see this is an irresponsible way to manage disabled parking?

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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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Mama Lewis and the Amazing Adventures of the Half-Brained Baby has a new home now. Come visit us at mamalewis.com.

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When I wrote my 100,000 hits post, it was only February of this year. It took almost a year and a half to get there, and now a third of the time to get here.

But, that’s not what I really what I find amazing. 200,000 hits is small potatoes compared to everything else that happened in that short amount of time.

May discovered her mouth. She enjoys making clicking and humming sounds. She spits like a champ. She sings along with us. Her laugh is infectious. I defy anyone to not giggle along with her. What a joy she is!

May’s seizures disappeared. We go weeks without seeing one now. Let me repeat that for those of you new to my blog. We go weeks after almost two years of frequent seizures, at their height over 100/day. To rid herself of these, May had to endure medicine trials. That’s how she learned to spit like a champ.

May learned to sleep through the night. We should win a medal for that.

May moved on to chunky food and put on the pounds! Finally! (And, from this, I learned that my instincts are right. Two fingers to so-called experts who doubt and patronize thoughtful, reflective and informed parents.)

May became more independent. She mastered the Bumbo seat. Which means, she can sit – be it aided. That is an amazing step forward. Not to mention, she LOVES her Bumbo. She also loves her bouncer. In both of these, she will happily play on her own for 20 – 30 minutes at a time.

And, just in time – because she needs to be more independent after the major event of the year. A healthy, baby brother for May!

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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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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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Yesterday, I attended a cesarean clinic at my hospital’s birth center. During the clinic, a midwife prepared me in the same way as for a normal operation: pre-op instructions, blood samples, necessary prescriptions…

I thought it would be reassuring. The midwife would explain the before, during and after op, and I would ask all my serious and silly questions. When I saw my consultant on Thursday, he said not to worry, whatever I wanted, she would write it down and it would be done on the day. No problem.

Except, for the midwife, there was a problem. Several. There was a problem with the timing of the meeting; she kept looking at her watch. There was a problem with all my requests; like getting skin to skin contact since they need to wipe and warm the baby first. But, most importantly, there was a big issue with my requests about post-birth care of my baby.

“Because of my previous birth history, I wondered when the baby would be checked out by a pediatrician?” I asked.

“Oh, usually they examine the babies 24-hours after the birth. But, it’s not a problem, one of the midwives will do an initial check.”

My insides twisted up inside of me when I heard that. “Is there any way we could get someone in sooner,” I asked.

“I doubt it. The doctors really don’t like coming down earlier than they need to if the baby presents okay.”

She already asked a detailed round of questions regarding May’s birth, so she knew the circumstances. Yet, while we spoke, she jotted down notes in my file – mundane things like, “swab provided” – while simultaneously speaking from script. There was nothing ordinary about May’s birth, but she gave me the brush off in the manner people do when they think they’ve heard it all before.

Therefore, when she said, “The doctors don’t really like coming down…” I fell into a kind of emotional coma. Inside, I screamed, “They can’t come down one flight of stairs and check on a baby that might die? What? What?”

But, on the outside, I exhibited no signs of life. Instead, I calmly said, “Issues with my daughter weren’t discovered for 12-hours. I don’t want that to happen again.”

Very casually, like we were discussing food on the ward, she asked, “And, what kind of signs were those?”

I collapsed inside as I delivered a list of a series of symptoms that anyone, medically trained or not, would know could kill a newborn: “She wasn’t breathing. She had major seizures. She wouldn’t feed. She didn’t cry.”

She is unfazed. “Well, if that happened, I can assure you a doctor would come down immediately. And, there will always be midwives on hand to check her.”

“No offense, but there were midwives on hand to check May as well, and when I thought she wasn’t breathing, my midwife didn’t even pick her up to check her vitals. I’d really feel more comfortable if a pediatrician could check the baby over as soon as possible.”

The midwife looked at her watch again and said, “I would like to say I could guarantee that, but I can’t. So, why don’t you ask the team on the day and they will see what they can do. And, if that is all…”

I was encouraged to leave. And, I’m ashamed to say, I did. I left. I found myself smiling at her and walking, of my own accord, out of the office, down the hall, into the elevator and out the hospital doors.

For the next three hours, I didn’t do anything. I didn’t listen to any music on the drive home. I didn’t eat any lunch when I got there. I sat at my kitchen table and I stared into space and thought, “No one is going to watch out for my baby. My baby is going to stop breathing and I will be too tired and drugged out to realize.”

Finally, my husband phoned to see how it all went. As soon as I heard his voice, I sobbed. I told him what happened. He was furious. “What is wrong with these people? Don’t they know that May almost died?”

“I tried to explain,” I said, feebly.

He calmed his voice. “I know you did, honey. Who did you talk to? I’m calling the hospital. I’m calling them right now.”

Ten minutes later he phoned me back. “Don’t worry. I spoke to one of the obstetricians. He is putting in the request now, a pediatrician will examine the baby. There was no question. He didn’t argue with me. He was in total agreement.”

He gave me the number of the doctor, who I called. By the time I got a hold of him, the request had already been made and filed. “Don’t worry,” he said. “You are completely right to worry. There will be no problem having a pediatrician look at your baby. It is totally justifiable.”

I felt so much better. But, so much better is still not the carefree mother-to-be I was when I entered the hospital yesterday. The midwife – that insensitive and irresponsible woman – reminded me all too clearly that the care you get greatly depends on who you get on the day. Fingers crossed it isn’t her.

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