May you are 2 1/2 years old! Happy Birthday!

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!

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May’s been nominated! Spread the LOVE!

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!)

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Social Services and the Case of the Respite Request

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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May needs glasses! Woohoo!

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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An Amazing Half-Brained Baby Milestone: 200,000 hits!

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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Stop grinding your teeth May!

After your baby was born, where was the first place you ventured out of the house to?

I’m American. I went to the mall.

Worse, I went directly to the baby store. (I also went to the book store. A girl’s gotta have her fix.)

At the baby store, my husband pulled the stroller up to the elevator doors so we could go upstairs. The doors opened and two women pushing a stroller came out. Nothing unusual in that except the boy in the stroller was wearing his pacifier around his head.

He wasn’t holding it, it was attached to his head by a piece of elastic fabric. “Genius!” I said out loud.

Gareth got in the elevator and I walked off. I left him and the baby on the elevator. I abandoned my newborn baby. I was fixated on one thought: May-teeth-grinding-May-teeth-grinding.

Determined to stop the women, I ran off after them crying, “Excuse me! Excuse me!”

They stopped and turned around. “Your boy. His pacifier.” I wasn’t explaining myself properly. I gestured towards his face. “My daughter, May, grinds her teeth and she can’t hold, she doesn’t know how… and I saw your boy.” I never know how to explain May to complete strangers.

Thankfully, they were both very nice. His mother asked, “Does she have cerebral palsy?”

“Yes,” I said, gratefully.

Turns out Sasha (I hope I have his name right – and, if his mother is reading this, feel free to correct me!) can’t hold his pacifier in his mouth any better than May can. His mother explained that it calms him down and he hates to be without it. She came up with the ingenious idea of tying a bit of elastic band into the holes on the side of the pacifier, wrapping it around his head and TADA!

I can’t promise that May looks as adorable as Sasha did in his. I wish I’d taken a photo of him as a demonstration – he was such a cutie.

May and I are indebted to Sasha’s mother who, like I’ve already said, is a genius. After months of trying to figure out how to stop May from grinding her teeth, Sasha showed me the way. All hail this adorable blondie boy and his mother!

FYI: May uses a Tommy Tippie Xplora Gummy Teether, not a pacifier.

UPDATE: Sasha’s mum, Kate, has been in touch! Not only that, but she has her own blog where you can see a photo of Sasha and read more about him and his adventures. 

 

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

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Why new baby = zero posts (Also: Small Steps being evicted!)

You can probably guess why I’ve been a bit under the radar of late.

I have all the normal new baby joys and troubles (mainly: Joy! Joy! Joy!). In addition, there have been some particular troubles breastfeeding Ieuan that have left me feeling not only exhausted, but quite ill. You can read about them on BabyCenter.

Besides that here are my top three unbelievable moments of the past nine days:

1. Hearing Ieuan cry immediately after delivery. Incredible. I knew he’d be fine just from his voice. He is!

2. That the staff discharged us from the hospital two days after we arrived. I still can’t believe that we spent less time in the hospital than my entire labor for May.

3. How incredibly amazing a healthy newborn baby is. It is such a different experience and we are so grateful.

Something I do want to mention which has nothing to due with Ieuan is that Small Steps School for Parents, May’s school, is being evicted. They are too nice to call it that, but that’s what it sounds like to me. I don’t have the details, but I do have this email from the school which I hope you will share or share via Facebook, etc, as requested.

Small Steps only moved into this space just before May joined. It is very small, and although it is attached to a special needs school, I’m not sure how the space could be utilized differently. It is not a normal classroom size.

Small Steps School is the only school of its kind for children under-4 in South London. But, it serves a far wider area than just South London – as if half of London wasn’t big enough!

Please help if you can!

Dear Friends, 

Small Steps is looking for a new home!  The local authority has asked us to vacate these premises asap, by December at the latest, so we need your help.

If you know of any empty suitable (large, accessible) premises in South West London, please let us know.  Sole use is preferable, though all reasonable (and radical) options considered.

 Please help us in our campaign to ensure Small Steps’ survival.  Spread the word far and wide, copy this email to your contacts, Facebook and Twitter… we can’t do it without you!

 Thank you.

The Small Steps Team 

P.S.  Please contact us if you would like any more information or if you can help…

Small Steps, School for Parents

c/o Greenmead School

St Margaret’s Crescent

Putney

London  SW15 6HL

www.smallstepssfp.org.uk

Registered Charity 1089161Join us at our Facebook page:

http://www.facebook.com/smallstepssfp

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May’s Daddy Rocks!

I’m borrowing heavily today, some might call it stealing, from Ellen Seidman’s Love That Max blog. Her post Why dads of kids with special needs rock is a winner!  I give it a virtual headbang and two-divided-fingers thrust in the air – last seen by me circa 1989!

Too often, the fathers of special needs kids are not acknowledged for their role. We’ve definitely experienced many meetings, almost all of them actually (true – I’m afraid to say), where every question is addressed to me and I have to turn to my husband and include him myself. Sometimes, he is ignored completely even in his own home.

That’s why I loved her post which includes contributions from lots of special needs fathers where they explain their “awesomeness” as she puts it.

So I put it to my husband. His response? “I sing well to her in the bath. To an audience of one. That’s it, I think.”

WRONG. That’s not it.

Who was the one I saw singing to her in the hospital? The moment that made me realize that we would be okay?

You Gareth.

Who was the one who sat through all those heart-wrenching meetings with me? Who kidnapped me from the hospital to take me for ice cream in the park?

Who spends a Saturday afternoon in daddy/toddler bliss, snuggled on the sofa together? Who shares his ice cream and doesn’t care a bit when it comes back up all over his new shirt?

There are so many moments, I will bore people senseless if I continue.

But, if that isn’t enough – if you need further evidence that May’s daddy is the most awesome of all the awesome dads out there, watch this. In this video, taken this morning, May is doubled over with laughter, not losing her balance while bouncing – in case you couldn’t tell.

(Apologies to all Canadians – it will be clear why in a moment…)

What makes your child’s father AWESOME? Sappy sentimental mush welcome!

Read more from me about Father’s Day and my pregnancy on BabyCenter or via Twitter @MamaLewis1!

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We visit May’s future (school)

Today, we took May along to Livity School, the special needs school that serves my area. I asked to visit. But, like many things in May’s life, even though I asked, I had no desire to go whatsoever. If my husband couldn’t have gone with me, I would have stayed at home. In bed. And, pretended it wasn’t happening.

But, he did show up to pick us up. He had to wait while I fumbled around, dragging out the time so that we were late. “What’s wrong?” my husband said, as I swapped shoes for the fourth time.

“I just want to look okay,” I said, swallowing back tears. I was reminded of the times when May was an infant and when people would come to visit, I would dress nice, wear makeup and put May in something cute. We couldn’t do much, I’d think, but we could at least look like we were trying. And, that’s how I felt today.

It’s not such a bad idea actually, to suit up before a challenge. Fire fighters do it. Doctors do. Ballerinas. And, May and I.

I need not have worried. I’d already heard reports from various members of May’s team, praising the atmosphere of the school and dedication of the staff. Some of May’s team even do days at the school, working with the kids. It is comforting to know that May’s team will continue to work with her, even when she is there.

Here’s what I didn’t expect. It was a school. A good school.

Maybe that sounds ridiculous. But, I expected I would walk in and see children of varying disabilities, some far worse than May and looking uncomfortable, being stimulated and developed but in therapeutic ways, not in educational ways.

I hate to say that my aspirations for May are so low. But, I was surprised to be told that the children in the reception class (that’s the youngest kids, aged 3 – 5) were learning their numbers. I want May to learn to sit. It never occurred to me that someone would teach her to recognize numbers.

There were other nice surprises at the school. The hydrotherapy pool is an actual pool. A big, children’s pool – and we saw a severely disabled girl in absolute bliss being swam around it by two members of staff. They had a garden where the children grew vegetables, and a soft play room and a sensory room that contains all this amazing equipment I know May will respond to.

So, for us, it was a very positive introduction. My husband said he’d feel very comfortable sending May there. I would too. And, May liked it as well. When we arrived the reception class were in the assembly room listening to music and she was craning her head around to hear. I think she is ready to join in, even if I’m not quite there yet.

It’s the final countdown to Baby Two’s arrival! Follow the last month of Mama Lewis’ pregnancy on BabyCenter, or via Twitter!

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This week I’m… sitting in a Bumbo seat. Fun! Independence!

May has conquered the Everest of the baby seat world THE BUMBO.

For those unfamiliar with The Bumbo Seat, it is one that babies can sit upright in as soon as they can support their own neck. The seat is made of a kind of firm foam that cushions and supports. The seat secures the baby’s legs, hips and lower back, leaving the upper back, arms and head free.

What the Bumbo manufacturers didn’t realize was that their design was actually a vehicle for kicking your legs and bouncing forwards and backwards (the point of the seat is that it won’t topple).

It took a long time for May to feel comfortable using the Bumbo. Archie’s grandma, Jill, our friends from Small Steps, encouraged me to drag it out from the depths of our closet and put May in it for just a few minutes once a day. At first, a few minutes was even difficult. But, over the course of a couple of months, and with the strength in posture her Supergirl Suit brings, May learned to love it.

Here’s the other thing I love about it… this is one more step towards independence. There is very little May can do on her own, and this is one.

Our resident Supremo Cute-o demonstrates below.

It can be hard to find toys for special needs kiddies. If you are interested, I posted about other toys May loves on BabyCenter this week. 

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