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A bit of grrrrrr today. Grrrrrr.

Our car was sideswiped while parked about a week ago.

Today, the repair company is picking up our car and dropping off a courtesy car as arranged by our insurance company. I asked them if it would be comparable to the car we own. “Do you own a VW Polo?” he said, “Because that’s what it is.”

No, I don’t. When you have a child as severely disabled as May, a two-door hatchback doesn’t cut it. We could use the entire back end of the car, passenger seats and all to just fit the double stroller we have to use.

I called the insurance company and asked for a bigger car. I even offered to pay the difference. “I’m sorry,” the customer services lady said to me, “but we can only arrange a car as in keeping with the policy.”

So, I explained my daughter’s disabilities. “I’m sorry,” she said, “but it would be unfair on our other policy holders.”

“But, it isn’t fair on us,” I insisted. “Our situation is not equal. We are not receiving a mode of transportation that is equal to getting us places like the rest of your customers.”

This went back and forth for a while. I asked to speak to a manager – who she said was unavailable. “I’ll hold.”

“He won’t be able to speak with you. He will call you back within 24 hours.”

“That’s not good enough for me,” I said. “We need a car today. I’ll hold.”

“You will be holding all day. He is busy.”

“Let me put this in perspective. My daughter can’t walk or talk. Your boss is busy.”

There was a low moan and she asked me to wait. Five minutes later she returned, “My manager is too busy to speak to you, but he has approved a bigger car.”

“Thank you,” I said sweetly.

I don’t enjoy these conversations. I don’t want to speak to managers or throw my daughter’s disabilities in someone’s face. But the fact is, our lives are harder than most people’s.

I have these conversations with airlines that refuse to chill my daughter’s medication because it will take up room in their refrigerator. Or, nurseries that herald their special needs policies, but won’t prioritize May because it would be “unfair on other parents.” Or, people who park in handicap spaces and when I ask why say, “My wife is in the shop and she is pregnant.”

Pregnancy isn’t a disability.

I struggle to dress May in the morning. Fine. I accept that. It takes longer. We sing some songs as we go along. But, I should not struggle to access the basics that any other family, or policyholder, would be able to use.

Finally, enough grrrrrr. Here are a couple cute photos of my son. He turned three months old yesterday and he is no trouble at all. My insurance company could learn a lot from him.


Don’t forget to VOTE for May and Mama! We are nominated for Best Special Needs Blog at Parents Magazine!

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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!

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!

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!

A few months ago, I entered a giveaway to receive a free iPad for May. It was the second giveaway the blog, called Marissa’s Bunny, ran. In the first, Mike, the writer of the blog, organized a raffle where for every $1,000 raised, a special needs family would receive a iPad. Tickets cost $2.

In the first giveaway, 20 families were promised laptops. It doesn’t appear than any received them. Perhaps some did but, if so, the vitriol unleashed over the internet would imply few did.

Why then open a second giveaway? There is much about this story that perplexes me. Since my initial application, months ago, I have not heard anything back other than his own postings on the blog. (I did email him for this post, to hear his take on the status of the contest, but he did not respond.)

Once it was clear that receipt of the iPads was no longer a given, he wrote an elaborate story on the blog involving emailed threats, the police and his family’s safety. Without revealing any specifics, he conveyed vague threats of violence to towards himself and his children as the reason he was forced to stop. Given the tone of the writing, I hope it was all in his imagination.

This lack of details about the closure of the giveaway, combined with the disappointment of parents already bludgeoned daily by disappointments, sent the special needs blogosphere into a tizzy.

People have a tendency to trust and admire the parents of disabled children. There is no justification for it. I’ve never understood this. Not many of you readers know me in real life. I could be complete loser in real life, or worse, a man. (That is a joke!) Or even, an American! (Actually, that part is true.)

As the father of a daughter with special needs, readers took Mike on faith and donated A LOT of money to help raise money for his daughter’s surgery. I’ve read of figures topping $25,000, though how much exactly, I am unsure of.

On the other hand, it is not unheard of for companies and charities to offer special needs children free products. Only a couple of weeks ago, my speech and language therapist told me about a British charity that is giving away iPads to children. But, I’ve never heard of something like this.

What a curiosity! Have you heard of the Marissa’s Bunny giveaway/raffle?

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

If you think May is a superhero – if her Superior Power of Cuteness has directed you to read posts when really you should be working, there is no need to thank us. Who needs a job anyway? Mama and May approve of your devotion!

Here are a few ways you can spread the LOOOOVE:

1. VOTE for us! Parents Magazine is running a Best Blog Awards contest and we are nominated for Best Special Needs Blog.

2. Can you help out May’s special school Small Steps School for Parents? The company Give-It-Away has donated in excess of £150,000 to Small Steps over the years by renovating and selling on houses in London. Do you work for a building firm? Or, do a bit of plumbing?  If you think you can help, even to give them some publicity, not only Small Steps, but all the other small, underrepresented charities that they help will be very grateful!

May thanks you! (bounce, bounce, bounce!)

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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