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Hello? David Cameron?

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.

I’m an hour early for the celebrations this year. May officially turns 2 1/2 tomorrow, but we are celebrating now with her uncle and aunt who are in from Perth, Australia. What better gift for May’s birthday than two more people around to spoil her!

Considering how far May has come, I’m especially excited as to what the next six months will hold since May started with doing more physio and other therapies, and also – fingers crossed – will be starting at a special school in January.

In keeping with previous birthday posts, let’s all celebrate May’s amazing accomplishments!

(Bouncing encouraged, but optional.)

May, when you were born, here is what the doctors definitely knew you would be able to do:

– pee

– breathe

At two and one half years old you can:

– sleep in your big girl bed (but not through the night grrrr)

investigate your new sibling’s mouth

– enjoy being on your tummy so much you giggle rather than cry

even prop yourself up on your arms and have a look around 

– lift your head up and hold it up in awkward positions

– relax and remain in a side lying position without support

– show the potential to control your hands and arms more

– play independently in your Bumbo or bouncer for 30+ minutes

express your disappointment with Welsh rugby

Happy Birthday May! We love you!


You can read more from Stacie on BabyCenter or Twitter!

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.

I have a wish list for May. It’s for both of us really because anything that interests her, makes her giggle or helps her be more independent is a gift for me too.

My list:

1. A toddler sized Bumbo seat so that May can continue to enjoy sitting as only she knows how.

2. A teether that stays in May’s mouth while she is sleeping.

3. May to sleep through the night (Yep. That’s right. We are back there again.)

4. Ieuan to sleep through the night. (It’s like my own small Hell here at the moment. Be it a very cute version of Hell.)

5. A holiday. Anywhere.

So, in part, an unlikely-to-be-achieved list. We can all dream. I even wrote to Bumbo at one point and asked them for a toddler sized seat, but alas they do not make them.

One free thing I did receive this week was a pack of flashcards from a friend who runs the company Who Loves Me? I sent her photos and she sent me back flashcards with members of May’s family on them.  On the back, are short statements I wrote and read out to May so that the whole thing became a little story of my own creation. May enjoyed the colors and the little stories. My favorite card is of Ieuan and Grandpa together at The Original Pancake House for the first time. Lots of giggles when that came up. May LOVES the Pancake House thus proving she is a real Lewis. (Incidentally, Ieuan’s favorite card was also this one! Lots of smiles when I turned it over. He loves his Grandpa.)

So tell me… what’s on your wish list?

*Disclaimer: Though I received the cards for free, my opinion about them is my own. And, unlike the cards, the fun we had with them was not manufactured!

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

In this, the next segment of our continuing series ‘Yes May, but is it art?’, we consider a new exhibition that passed before the newly bespectacled eyes of little May this week.

It was not May’s first time at Salisbury Cathedral. She and I enjoyed the cathedral’s tea and scones while I was pregnant and unable to complete the Cathedral tour on a visit only four months ago. I was gutted. (A lie. That scone was love on a plate.)

This weekend, however, May was determined to see more at Salisbury Cathedral and was treated to the Conflux exhibition of Sean Henry sculptures. The exhibition’s life-like sculptures of people juxtaposed ordinary people with the saints adorning the cathedral.

I reached this woman's elbow.

May is a big fan of exhibits that challenge the viewers to consider the value of things. In this exhibition the question was: Should average people be considered equals to the saints they are placed amongst?

The sculptures had a surreal quality that May found easy to ignore, even if her mother found it slightly disconcerting. May can easily brush aside anything she feels is not significant enough to draw her attention. From afar the sculptures looked real, but up close it was a frozen reality and just that bit too large – large enough to make her Mama feel like she was in a scene from Alice in Wonderland. (My husband said I should be used to this since I am already so short, it is a feature of my every day.)

But, who cares what I think?

May, is it art?

On approaching the magnificent cathedral through the square:

Snoring. Bit of wheezing.

After a bottle of milk in the catherdral cafe:

Perking up. Ready to critique some art!

In baby changing room toilets listening to the hand dryer:

It’s art! It’s art! (May loves hand dryers.)

Outside by the sculpture of a woman walking:

Interesting. Possibly art. May listens carefully to see if she makes any funny noises.

Standing inside the open sculpture of the same man lying in bed and standing by a table:

It might be art, but it certainly isn’t interesting. You know what’s interesting, Mama? Dinner. Dinner is interesting.

At that point we retired to the pub where May and her daddy were both reacquainted with their bottles. I waited until then to ask the most pressing of questions: May, does art have a place in religion? Should places like Salisbury Cathedral celebrate modern art?

Slurp. Slurp. Big smile. Straight into bouncing!

Salisbury Cathedral, be proud. May approves.

Side story: My friends, who live in Salisbury and hosted us for the weekend – thank you Anthony and Donna! – saw a dog contemplating this exhibition the previous weekend. The dog could not figure out why the man in the bed looked so much like a man, but neither smelled nor moved like one. So if anyone fancies creeping out their dog, this exhibition is for you.

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

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