Archive for March, 2010

I had one today. Ella is sick again, she has a virus that is causing a painful cough, pink eye and lots of gas/tummy pains. She is crying, having a lot of seizures and just seems uncomfortable. Things are hard right now. I understand that this will pass and she will get better, but when Ella gets sick I worry. We were in the doctor’s office for the 2nd time this week, Ella was coughing and crying and I was trying to calm her. There was a woman in the office that was staring over her magazine. I tried my usual tricks to get her to stop staring–smiling at her and staring back–it didn’t work. Finally, I looked right her and said “Hello, how are you?” (not in a nice voice.)  She looked at me like I was crazy said “Hello,” stopped staring and returned to her magazine.  I know that I should have handled this better. I feel terrible when I act out, it does no good for anyone involved. I get flushed and flustered, Ella feels my emotion, stiffens up and cries more and I am sure that the women in the office didn’t think twice about what happened.

Ella is doing ok–she is on nebulizer treatments for the slight wheezing in her lungs and Tylenol helps with the painful cough. What can they give a Mommy that is feeling a little bitchy? Chocolate?


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Recently, I was talking with a friend about my post “On my soapbox…” (https://juliepeoplesclark.wordpress.com/2010/03/10/102/) –we were discussing why someone would say something so insensitive and clearly unfounded about children with disabilities. My friend mentioned that sometimes people think that people with disabilities are a drain on society and pull education dollars away from healthy children.

I beg to differ…I can list many, many people who have made money off of Ella’s disability. Doctors, nurses, lawyers, accountants, physical therapists, occupational therapists, speech therapists, special education teachers, social workers, designers of wheel chairs, manufacturers of wheel chairs, designers of assisted technology, manufacturers of assisted technology–I could go on and on. If there were not people with special needs in this world many hard-working talented people would not have jobs. Doctors, therapist, teachers and everyone who works with Ella and other children and adults with special needs are challenged to think outside of the box to meet the unique needs of each individual they work with, making them a better professional in their field. At one time or another during our life’s journey, it’s likely that we will all have to call upon one of these professionals whether it be for yourself or a loved one.  I know that I certainly appreciate a professional who has an open mind and heart when dealing with such personal, life changing matters. In my humble opinion, people with disabilities provide jobs which helps stimulate the economy and enhance the expertise of the people who work with them.

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Lunch or Dinner

Thought I would share Ella’s food prep. All of Ella’s foods must be blended and we spoon feed every meal to her. Early on Ella had trouble gaining weight so we make sure that every calorie counts. Every Sunday Dave and I prepare a weeks worth of meals for her.

For breakfast this week we made a porridge mixture in the crock pot with barley, flax meal, millet, quinoa and brown rice. We mixed that with almond butter, dates, goji berries, walnuts, almond milk and maple syrup (we are in Vermont.)

For lunch and dinner we made grilled chicken, brown rice, steamed kale or carrots and peas mixed with water and chicken broth.

Another one of her favorites is sweet potato, almond butter, sunflower seeds and dates mixed with almond milk. Often times we will blend up whatever Dave and I are having for dinner–as long as it is healthy. My sister says we know we are eating right when we can blend it up for Ella.

Dinner–brown rice, chicken, and carrots and peas

Vita Mix

Before they go in the freezer

We use a high powered blender (http://www.vitamix.com/) to blend all of her food to make sure she can handle the  consistency.

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…not only is he super dreamy, he is an amazing father and husband. When Ella was born my husband Dave was teaching special education in Baltimore County serendipitous indeed. Dave has always been so positive and has never felt anything was wrong with Ella. He wants her involved in everything and is strong enough to make sure that happens. When I was going trough my depression he took on all of Ella’s intense therapies so I could get well. A friend told me after I recovered that Dave said he would give me 20 years to get well and then he would think about moving on.

One of our biggest challenges was and still is Ella’s sleeping patterns. When she was very young Dave would stay up with her until 2 or 3 am then wake me and I would stay up with her until about 8 am then she would fall asleep for a few hours. This was her pattern for the first year or so. Dave and I made a pact early on, anything said to each other in the middle of the night didn’t count and the slate was wiped clean each morning. Ella’s sleep is much better these days but is still not great, but we don’t complain. And our pact still holds up!

We also decided that once a year we each do a solo holiday. Dave usually goes hiking with his brother, this year he is climbing Mount Rainier in Washington. I have gone to India, been on yoga retreats, done a 10 day silent meditation, and this year I am getting my Pilates certification. Dave starting doing these solo trips when Ella was two, I waited until Ella was three because I felt guilty leaving her. At Dave’s urging I went away for 4 days to Kripalu Center for Yoga in the Berkshires of western Massachusetts http://www.kripalu.org. It was very hard for me to leave but so worth it. The trip was wonderful–I slept in, took yoga classes, got a massage, read and hiked the beautiful grounds around the center. I returned to Ella and Dave refreshed and ready for the challenges that come each day. I realized how important this time is for each of us and Ella is fine while I am gone she is with her favorite guy! Getting caught up in the day-to-day is so easy, but the trips help us stay present. Because the trips are physical or spiritual they take time to prepare for; Dave must train to climb the mountains and I had to mentally train to sit in silent meditation for 10 days. We give each other time each day to go the the gym, a yoga class or sit in meditation. The trips stay with us and make us appreciate each other and our daughter and our lives together.

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The other day I got a call from a friend who has a son that also has special needs and attends the same school as Ella. Apparently at a recent school meeting a question was raised about the ability of our children to learn. My friend was upset by this and wanted to let me know right away what was said. First of all–it is my child’s and every other human being’s civil right to an education no matter what. So there is no need to go into any of the details and facts to prove that Ella can learn. With that said, after I got off the phone I sat for a few minutes to explore what I was feeling. It wasn’t anger–I’ve been angry and it has not gotten me very far in life— It was sadness. Not sadness for Ella anyone who spends anytime around Ella knows that joy and love pour from every cell of her being. It wasn’t sadness for myself in the 7 years that Ella has been in my life I have developed confidence as a mother and a human being, patience, kindness and unconditional love. My marriage has grown stronger, my relationships with family and friends has deepened all as a result of this incredible experience and my remarkable child. The sadness was for the person who made this comment. Ella and children like Ella are such a gift to us all — teaching us love, understanding, compassion, patience and so much more. Attributes that I feel are lacking in far too many of us.

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Does this look like a face that would judge you?

A girlfriend who I have not seen in a long time and her young son were visiting a few days ago. We introduced her 3 year old to Ella and he asked what’s wrong with her. I explained that Ella had an accident when she was born and it hurt her brain so she cannot talk or walk. He said, “Oh, can I play with her?”  I said, “Sure.” He proceeded to shake Ella’s hands, show her toys and do everything he could to make her  laugh–which is not hard.

My girlfriend pulled me aside to apologize for her son’s blunt question. I told her that I would much rather have someone ask me what is wrong with Ella rather than stare and whisper like many adults. I understand that people feel they may offend me by asking or use the wrong language when asking, but believe me asking is so much better than just staring or giving me pitiful looks. I love to talk about Ella and all she has accomplished–that is what this whole blog is about! And I will happily teach you the correct language to use when talking about a child with a special need and I will not ever judge you if you slip up–you had the courage to ask and start the conversation.

A few years ago my sister was at a pool with her son and there was a little girl with special needs in the locker room. My sister said she spoke to the Mom asking what was the little girl’s disability. My sister said the mom was so gracious and happy to talk about her daughter. My sister said she never would have approach this woman if it were not for Ella.

If you ever have a question ASK. More likely than not parents would love to talk to you about their incredible children and I am sure you will be better off for asking.

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March Madness is a very special time in our house. My husband Dave was a star basketball player in college, he is always super excited to watch the games. Ella was born in February and spent three weeks in the nicu, by the time we brought her home from the hospital March Madness was in full swing.

Ella and her Dad have a very special bond—she adores him. They spent many of the first nights that we were home that March up watching basketball together (remember Ella never slept.) One game in particular, Maryland was playing, Drew Nicolas hit a 3 point shot to win the game. Dave began to scream and so did Ella. It was the first time she made any noises in response to our voices. Dave has always been the one that Ella responds to the most.  Celebrating 100 days of kindergartenHe can make her laugh so hard her whole body shakes.  She is a Daddy’s girl through and through.

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