Posts made in November, 2011

Does May hate her little brother? (Photos & Video!)

Posted on Nov 30, 2011 | 6 comments

Does May hate her little brother? (Photos & Video!)

Hate. Okay, it’s a strong word. Not as strong as despise or loathe perhaps. But, surely, May – that sweet, little monkey – doesn’t hate Ieuan. Or, despise. Or, loathe him. He’s adorable after all. He never stops smiling. What possible reason could she have to hate him? Well, for one, he pulls her hair. She definitely hates that. Every time I lay her down next to him, she screams bloody murder – if not the moment I set her down, then a minute later, after his little hand has clamped itself firmly around one of her curls. Here’s the other thing: she loves to hear him cry. The more upset he gets, the better. Surely, her relishing in his misfortune isn’t a sign of sibling love. Young love? But, then, there are moments. Beautiful moments where they both lie peacefully next to one another, Ieuan holding on to May’s hand. Or, when they both await a tickle attack, side by side, both pealing in laughter with anticipation. In those moments, it doesn’t seem all that bad to have a little brother. On the bright side, her displeasure is a sure sign she knows he exists, and that pleases me immensely. That is a great success. What do you think? Check out this evidence of their love/hate...

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What’s God’s plan for May?

Posted on Nov 25, 2011 | 37 comments

What’s God’s plan for May?

I wrote a post this week for BabyCenter in honor of Thanksgiving called How I’m thankful for my half-brained baby. Never before have I received so many comments where the prevailing theme was God. Your daughter is beautiful!!! God bless her always. Thank you for writing such a beautiful story. People complain a lot about everything and here you are making the best out of this. My prayer is that you and your little angel will always be the best companions! This was just the beginning. The best still lies ahead. Always remember: the darkest hour is just before dawn. May the Lord richly bless you! These are all beautiful sentiments, but I think it will disappoint them to know that I’m not a very religious person. I’m curious. I’m interested in the world. I wonder about a lot of things and I certainly can not explain them all. But, religious? I am Jewish. I definitely associate myself as such. I am interested in getting involved with the London Jewish Community, but I haven’t as yet and I imagine it will take Ieuan getting a little older before I do. I always wondered whether, in a time of crisis, I would turn to God. People seem to do so, suddenly, when the need is great. Then, I had a time of major crisis after May was born, when I knew her life would be forever limited and I thought my life was grimly over as well. Weeks after May was born, I realized that not once had I prayed to God, nor had I grown angry with him for what he had done. Before it happened, I questioned the integrity of my lack of belief. After, I no longer doubted. I feel no connection to God. I wish I did. I wish I could access the strength of faith that others do. But, I don’t believe. Other people are welcome to pray for May. I like that May is not far from people’s thoughts. I don’t mind when they call her a blessing or a gift. I feel those things too. But, her injuries are not a blessing or a gift, and I certainly don’t want to think of them as the opposite, a punishment. But, what of talk of God’s plan? That God would fufill his plan by destroying May’s life, is not something I can contemplate. I can’t conceive of how the brain damage has benefited her in any way. That it may have subsequently meant some other good has happened is inconsequential. Many people have wanted to comfort me by explaining that God doesn’t give us anything more than we can handle. By that, they always mean me. He didn’t give ME anything more than I can handle. They never mean May. Because clearly, May’s injuries are more than she can handle. Finally, one last comment from the BabyCenter post: My prayer is always for you and your daughter. Dont worry, soon she will recover miraculously. There are no miracles at hand for May. One of the most difficult things for me has been to face this idea down. How wonderful it would be to believe that miracles await May, but they don’t. What does await her is years of love and strength, not from God, but from her parents, family and friends. What awaits her is the best that education, equipment and therapies can offer her. What awaits her is people: patient, kind and generous in her community. I worry about many things, but I trust that, in the end, we will find her all...

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So, what’s May’s new school like?

Posted on Nov 23, 2011 | 5 comments

So, what’s May’s new school like?

Two weeks ago, we took May along to her new special school. We met with the Headteacher. We learned May is on the books to start in January. This is all amazing and tragic news. I really don’t know how to say it differently than that. No parent “wants” their child to go to a special school. I don’t “want” May to come within five feet of the place. What I want is for her to go to nursery, then school, then university and on to a prestigious job that is anything but singing with piano accompaniment in a lounge bar, or directing a hedge fund. What May will get is nothing like what I want, and that’s fine. That’s good. She needs this school. She needs to be immersed in an organization that gears everything toward the progress of children with special need; a place where lunch and play and therapy, all blend together. Despite my complete adoration of her nursery, this is not something they can do. Two years on, when I pick up May at night, I still hear reports that May isn’t “hungry” or “thirsty” or “wants to wear her glasses” today. There is a funnel of energy that churns inside of me. During these moments, that funnel becomes a cyclone. But, I know they do the best they can, within the limitations of a mainstream nursery – meaning, they are not a special school. They are not geared up with every piece of equipment, every bit of training, every plan they should have to guide a child like May. Instead, they make do with an enormous amount of heart, passion and determination to help May feel comfortable and access all activities. Noble, but different than pushing May to progress. I’m still not sure what kind of impact the new school will have and I won’t, not until months in. I have hope and this rests mainly in the people I have met so far. These people are also driven by their hearts and passion and determination to help children like May, but this time they have training and sensory rooms and hydrotherapy pools at their disposal. They have a playground with soft tarmac to lessen degrees of falling. They have a soft play room. They have a garden and an atrium. Everything in the building is crying out for a sweet little girl like May to sing and bounce with. Lest we forget though, the school is not a miracle in a building. It is a school and for that it is affected by politics, funding cuts, lack of time and a host of other priorities. I work in a school as a teacher. I know how easily it is to get sidetracked by a minority issue when the pressure is on you to do so. Often, the priority of a school becomes targets, target setting, reports and meetings, rather than the important, knuckle down work of teaching. I am dubious, hopeful, devastated and thrilled. But, one thing I am not is...

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What toys should go on May’s list to Santa? (plus my 3 ideas for you)

Posted on Nov 19, 2011 | 16 comments

What toys should go on May’s list to Santa? (plus my 3 ideas for you)

Special needs kiddies deserve some seriously special toys. I have to admit that I am frustrated with the selection out there. Toys specifically designed for special needs kids are usually grossly overpriced and unavailable in your local toy store. On the other hand, toys made for all children are designed to be tough. But, May can not press down hard on to an object; she needs toys that are very sensitive. Tough and sensitive. A rare toy combination. Regardless, I never stop looking for stimulating toys for my daughter. Every time I enter a toy store, I hope I will find something amazing and not think, “She can’t press that/pull that/see that…” I want to go into a toy store and say, “Yes! My gorgeous girl will love playing with that.” Thankfully, I’ve found a few. The toys May loves best are the ones that she can easily set off into riot of songs. Usually, they aren’t special needs toys, but toys made for all children. Here are a few of them: 1. Mozart Magic Cube (Munchkin) This is a symphonic toy. Each side of the cube starts and stops instruments from playing. Very sensitive to touch. Also, the least irritating songs (to parents) on a toy ever!     2. Spin and Discover Ocean Fun (VTech) The animals on the side of this toy react very easily and May loves the animals sounds they make. As soon as I turn this on, she goes crazy with happiness. Also, the toy spins, even without pressing on the top. Movement is easier to see for visually impaired children, like May.     3. Tiny Love Classic Mobile (Tiny Love) I know May isn’t a baby, but she still loves this mobile. The music is soothing. Visually, it remains one of the few toys I know she can see. Just a pleasure. And now, her brother, Ieuan loves it too!     So, those are my suggestions; but, we already own these toys. What toys should I add to May’s holiday gift list? Number one is a Childrite seat, suggested by several readers. May loves her Bumbo seat so I am so excited for May to receive this! But, May can’t have only one present! She celebrates Hanukkah and Christmas. I need some more suggestions. What do you think I should add to May’s holiday gift list? For more toys for special needs kids, see my Babycenter post 7 Amazing Toys for Special Needs...

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May is a rock star. (VIDEO)

Posted on Nov 14, 2011 | 7 comments

May is a rock star. (VIDEO)

May started music therapy a few weeks ago. Does she like it? She LOVES it. Who knew therapy could be so much fun? She laughs and sings the whole session. May attends a center run by Nordoff-Robbins, a music charity with many locations around the world. May attends the center at the Brit School in Croydon, the same school that churned out Amy Winehouse (NOTE TO SELF: Is that a good thing?). The center received a £250,000 donation from Sir Andrew Lloyd Webber‘s foundation. While May is very famous, Sir Webber you may or may not have heard of. (joke) We already know that May loves music. That’s a fact. Songs are one of the few things that get her moving, and even in her new physio sessions we sing to May to encourage her. For me, knowing that May would love a therapy meant that the pressure was off. For me, it doesn’t matter if it “works”; if it gives May pleasure it is bound to be beneficial. That said, music may help May in all kinds of ways, such as encouraging her to: reach (see the video of today’s session below) move towards an object repeat sounds make new sounds participate in call and response (basic communication) look towards objects Will it do any of these things? Watch the video below and tell me what you think our chances are!...

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