Sleep

The Special Needs Sleep Guide or “Sleep? What the hell is that?”

Posted on Jan 7, 2015 | 2 comments

The Special Needs Sleep Guide or “Sleep? What the hell is that?”

It’s 5.30 AM. Why am I up, you ask? If you are a parent to child with special needs you probably already know. May woke at 2.30 and mewed/cried/sobbed for attention until 3.45. I’m trying to retrain her to soothe herself to sleep so I let her “cry-it-out” a method of sleep training used on babies. You let them cry and extend the amount of time in between going in to comfort them. I lay with May the first time, but after that I held her hand or stroked her face. I left her alone and I waited in my bed for the first sound of her complaints which always seemed to accompany me just falling back to sleep. Each time, I waited just that little bit longer before joining her. Will it work? It has in the past. Back in 2011, I called it the Sleep Experiment. Tonight, it took over an hour. Tomorrow, the hope is that it will take less. And then less… Despite our success, we have never had the complete peace of knowing she will sleep through the night. For the past six months, for example, May has been sleeping through but waking at 5 AM every morning ready to go. Nothing we do seems to change that. If we could improve this one area, our lives would be infinitely better. May’s too – after all a rested child is a happier one. On nights like tonight, I lie in bed for hours after mulling over my life, May’s future and the slim hope this may change. Oh, for a bit of sleep to ease my mind. What works? For us, the “cry-it-out” method did transform her sleep. Before we started it, May would wake up several times a night screaming. Not crying or complaining – screaming. She was two years old, well past the baby sleep phase and we were going out of our minds. Once we did it, she learned to soothe herself. Yes, she still woke up, but it went from 3 or 4 times a night to 1 or 2. That was a major breakthrough. Keeping her well-fed helped. Once she was able to eat better, she slept better. She simply didn’t wake up hungry needing a bottle. Keeping her active exhausted her. Nursery, and then school, made a huge difference. She sleeps more fitfully when she is not in school. The stimulation of her days tire her out and allow her to sleep better. Highly recommended for those of you who can find a welcoming childcare provider. What works for you? In the hope that we all get a better night’s rest, I want to turn the conversation over to you: What do you do to help your special needs child sleep better? READ MORE: My Sleep Experiment 2011. Start at the bottom to read in...

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7 things “so-called experts” never say, but should

Posted on May 3, 2013 | 6 comments

7 things “so-called experts” never say, but should

After a collective 24 hours in therapies, medical appointments and general ‘Team May’ meetings this week, I have had my share of so-called experts. Because I don’t swear on my blog – and a big hello to my students reading this right now – I’ve decided to imagine a world where so-called experts didn’t make me want to take a sharp implement to their face. In this world, so-called experts say things like: 1. I won’t tell you again that you can’t live in your own home because of May. Until I find you the perfect home, I will not frighten you about this monumental issue of having a roof over your disabled child’s head. 2. It’s really none of my business what your daughter is wearing in this weather. 3. We will mange for one day without that exceptionally minor cushion for May’s seat. No need for three people to remind you of the urgency of that really minor cushion. 4. I saw there was no formula in May’s bag. So, we just gave her milk/juice/water rather than interrupt you at work. 5. I’d really like to hear May’s father’s opinion on this. 6. May looks so comfortable asleep. Let’s just leave her like that to rest. 7. We wiped May down when we saw she had vomit on her because we would be horrified to find any child sitting in their own sick on a special needs bus. Anyone want to add...

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I’m having separation anxiety!

Posted on May 3, 2012 | 5 comments

I’m having separation anxiety!

I leave tomorrow for New York City. My first vacation since before May’s birth. I am having separation anxiety already. I don’t even leave until tomorrow! I’ll be gone four nights. FOUR NIGHTS. A lot can go wrong in four nights. Let’s start with teething. It could happen. And teething is a short hop and skip to the misery that is zero sleep for a parent. I say “a” parent, because my husband will be on his own. He is completely capable. He is an amazing dad and his kids adore him. So, why is it that I have restrain myself from saying any of the following: 1. You know that May can have a dessert AND a dinner, right? 2. Remember to put her splints on and her glasses and her special shoes, especially when she is bouncing. 3. Try out the standing frame – it will make your life easier. 4. Call a friend if you need some help. They will help. 5. Are you sure you don’t want me to do a last minute grocery shop? (I did it anyway – today. In this, I could not restrain myself.) It’s occasions like these when I realize how much I have taken on. Relinquishing responsibility is as hard as bearing it all yourself. Having said that – I don’t bear it all myself. I have a husband and two care workers and a nursery and a special school and a nana in Wales and… I just hope that when I get on that plane, I let it all go. Because I need a break. I deserve it. A bit of a reality check about life outside May and Ieuan will be good before I return to my job at the end of this month. And – WHOA – do not get me started on that. Do you get separation anxiety when you leave your...

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Happy Birthday May! You are THREE!

Posted on Apr 23, 2012 | 9 comments

Happy Birthday May! You are THREE!

Six-months ago, when I wrote my bi-annual birthday review of May, I really despaired. I didn’t say so in the post – these birthday posts are times to reflect on progress and celebrate May’s happiness. But, her list of achievements was not all that distinguishable from the six-months previous. When I composed it, I panicked. Was May’s progress petering off? Would she still progress and develop in a healthy way? Six-months ago, just as I was writing that post, May was about to have a stimulation immersion. This after my very troubling discovery that May had been in receipt of very little therapeutic stimulation for some time. So, it was about six-months ago that all this began: one hour private physio every week a half hour music therapy every week finally saw her OT again after languishing on the waiting list for months acquired a standing frame in school and at home started at her special school in January (morning sessions) moved to a new room at nursery (afternoon sessions) so received a lot of attention and mixed with children of her own age Where previously we had only the added input of the Small Steps School team (and, where would May have been if I hadn’t received their support and guidance?), now she has stimulation coming from every direction. Did her stimulation immersion help her progress? Did it made a difference? In keeping with previous birthday posts, let the celebrations begin! May, when you were born, here is what the doctors definitely knew you would be able to do: – pee – breathe At three years old you can: – sleep through the night! (WOOHOO!) – relax your muscles, particularly your hands – move in far more natural way (less jerky and tense movements) – move your arms and legs independently of one another – twist your torso from side to side – go pee-pee on the potty (if brought to it at specific times and held there by mama) – recognize (by laughing hysterically) when a light changes color and look in its direction – sleep through the night (Double WOOHOO!) – make sipping movements with your mouth when I ask, “Do you want water?” – play an instrument – eat three full meals a day (that’s major – May often couldn’t finish meals) – be unbelievably happy almost all the time for several months straight – fully appreciate our new home entertainment system that is Baby Ieuan – sorry, did I mention SLEEP THROUGH THE NIGHT??? Given enough time, I probably could have come up with ten more things. Happy Birthday to May, my amazing half-brained baby genius! Who knows what incredible feats your third year will...

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It’s my birthday! 5 things on my wish list

Posted on Oct 12, 2011 | 11 comments

It’s my birthday! 5 things on my wish list

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...

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