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Archive for the ‘sleep issue in special needs children’ Category

Today I turn 40. Wow 40! It’s good, all good. My thirties were hard. Ella was born when I was 29, I spent the first 5 years of my thirties wallowing in and recovering from deep, dark postpartum depression. The second half of the decade I was figuring out how to be a Mom of a child with special needs. I can honestly say I am looking forward to the next ten years. I have been through hell, I survived, I am ok and now I am ready to be perfect.

When I look at Ella I see my beautiful, perfect child who is so brave and has overcome so much. I don’t see her crooked spine or her lack of speech or motor skills, I see my hope. She is a bright light, an inspiration. My reason for waking each morning. She is perfect.

When I look at my husband I see greying hair, IMG_7028lines around his eyes, a body that is a little less toned then it used to be and perfection. I see a man that supported me through a depression so deep that I couldn’t move for two years. I see a man that put his career on hold to care for Ella giving her a strong foundation of health and happiness. He is perfect.

When I look at my family, friends and strangers I see beauty. I see their perfection.

When I look at myself, I see a woman that has been through a lot. I have cried a lot, screamed a lot, cursed a lot, slept very little and laughed a fair amount too. However, it’s hard to see my own perfection. I notice the 5 lbs I wanted to lose before I turned 40 and the blemish on my forehead. This is not fair to myself, I deserve the same treatment that I give to others. So on my 40th I give myself the gift of perfection. I am perfect, just the way I am. I will spend the next ten years reminding myself of this everyday.

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My senior year of high school 1991. Almost ready to escape the cage.

My senior year of high school 1991. Almost ready to escape the cage.

Disclaimer: This is a negative post. The negativity is a result of my own mind, thoughts and actions, MY OWN ISSUES. No one is responsible for my negative attitude but me. AND…As I sit here writing this post Ella’s fabulous teacher andĀ paraeducator just texted me an incredible photo of Ella in the classroom surrounded by her peers helping her with a school project. šŸ™‚Ā 

Sometimes I have a hard time taking Ella to school and dealing with the “ins and outs” of having a severely disabled kid in the system. I knew this would happen because I have issues.

1. There are many, many parents at Ella’s school who I have connected with who are wonderful, encourage inclusion and treat Ella and me with love and compassion. However at times I’mĀ uncomfortable interacting with other school parents. I don’t like the looks of shock and pity that I get as I am struggling with the stupid heavy doors to get her in the school. Please don’t stand there, help me with the door. Give me a smile. I am aware of my difficult situation and looks of pity are not helping lighten my load. The whole yucky situation makes me feel like I am in middle school again.

2. I hate that Ella is mistaken for the other severely disabled child in the school all of the time. I hate that when I correct people they act hurt and walk away before I can introduce Ella to them.

3. I hate that I had to have a meeting with administrators about the fire drill/emergency evacuation procedures for Ella. The fire marshal suggested that if Ella is on the 2nd floor during an emergency she could be left in the stairwell until the fire/police arrive, since the elevator cannot be used during an emergency. This suggestion is completely unacceptable to me and frankly makes me sick to my stomach. Of course the school administrators agreed with me and were just as sick to their stomachs about the fire marshal’s suggestions. We agreed on another plan to get Ella out of the building quickly and safely. But really, leave Ella in a stairwell, I don’t think so!

4. I hate that I feel guilty about Ella’s wacky sleep schedule. I feel bad when she sleeps till 1:00 and I can’t get her fed and into school before the end of the day. I hate having to call and explain that Ella had another bad night and won’t be in today. Of course the school completely understands and has been nothing but supportive of Ella and her needs. They have seen that when we let Ella sleep her own unexplainable schedule she remains healthy and when we force her to wake up and go to school she gets sick. They have stated to me over and over that Ella’s health comes first.

5. I hate that I hated school as a kid. I hated the smell of the building. I hated the fluorescent lights. I hated the confinement of sitting in a classroom. I hated that I had to be quiet. I hated that I had to leave my Mom. I hated that I didn’t understand math. I hated the cliques and social games. I hated it all. It wasn’t until college that I began to love learning. In college, I spent most of my day in a dance studio and took classes on art and music. I got extra help in math and learned to tolerate it. Of course this is not the case with Ella. She likes school. She loves the interactions with her many friends. She loves the stimulation provided by her teachers and paraeducator and, dare I say it, she likes being away from me for a few hours (UGH!) I hate that I feel I may be projecting my discomfort of school and my negative experience on Ella. I wish that I could approach Ella’s schooling with equanimity and not bring my past baggage into her present experience.

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Electric Slide with Dad

Electric Slide with Dad on the Lido deck

Over the Thanksgiving holiday Dave, Ella and I went on a 7 day cruise to the Islands of the Bahamas with my parents, my sister and her family. I was looking forward to the trip, but we were still struggling with Ella’s reversed sleep pattern (going on for 7 weeks by this time) so packing and preparing for the trip added to my exhaustion (and short temper.) Anyone with kids can understand the extras needed when you go on vacation. When you have a kid with special needs, you can triple that load. The cruise line was very accommodating, letting us board the ship first, making and blending all of Ella’s food for the 7 days, bringing us a shower chair to bathe Ella and the staff was always kind and friendly as they helped us with the extras needed for her. However, the hallways of the ship were quite small and using Ella’s push chair was pretty impossible. We carried Ella all over the ship for the seven days. My biceps are a little bigger as a result! It was a good trip, great to be with family, lovely to see the stunning, tropical, aqua water of the Islands and ELLA SLEPT! Not only did she sleep, she slept well and deep and she switched her sleep pattern to sleeping at night!

The seas were very rough for most of our trip, Dave became seasick the first day (along with most of the other passengers on board)Ā and had to take dramamine though out the trip. Ella, on the other hand, slept. She would fall asleep at night around 10 pm and sleep sometimes until 12 or 1 pm the next day UNINTERRUPTED. Amazing! Who knew? Putting her on a huge, loud, seasick inducing cruise ship was the cure for her sleep troubles. Ella has always slept well near the ocean. Put her on the ocean and she will sleep the whole time.

So what to do next so she will continue to sleep. Sell our house and buy a houseboat or a sailboat ? That sounds great to me, but Dave would not be able to live with us. šŸ˜¦ So as soon as I came home, I started doing research on vibrating water beds. After sifting through some pretty racy websites, I settled on a vibrating massage pad for Ella’s bed. I ordered it and we tried it last night and she slept great! YEAH!

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Hanging on the Island with Mom

Although, living on a sailboat still has a great appeal to me. Dave could get used to the nausea right?

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