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Sunday, April 6, 2014

The dark unknowns....

This weekend was one of our daughter's fourteenth birthday. We have several immediate birthdays a month accept for June, October and December. For our children's birthdays they get to choose what they want to do. For our daughter this weekend she wanted to go shopping. Shopping with children can be detrimental to your health! It can be extremely exhausting especially when your child has no clue on what she wants. Standing, contemplating, breathing heavily deep in thought was our shopping experience. This is one of my daughters who has special needs. So without further explanation, it was time consuming. Patience is complete key, time is not a priority and 100% supportive help from me was a must. As soon as an item was chosen (by me) there was all smiles, and shopping moved forward. After awhile I started receiving blank stares, shrugging of the shoulders.....I asked, "What's a matter?" "I'm tired of shopping" was my daughters response. I thought, "YES" we have completed our mission! The reason why I chose to write about my daughter's experience shopping is because it's a daily ongoing mission continually processing life's simplistic tasks for many of our children especially hers. She turned fourteen but she's mentally like a four year old. Of course she wants to go shopping on her fourteenth birthday, she's fourteen! Although cognitively a four year old has no patience, nor can make decisions for themselves. It's over stimulating. For a toddler, if you give them a choice of a red or blue freezie, toddlers can't decide or they would want both. That's like our daughter. As my children's mother I'm constantly educating myself on their special needs, I'm constantly observing and trying to understand but yet sometimes.....I just want them to think for themselves. (I have seen their light bulb) I also believe that they need the opportunities to try, to make decisions on their own, and that's where I stood in several stores waiting for my daughter to make a decision for herself. I've always wished that I could jump into my children's minds for at least fifteen minutes just so I could have a better understanding on how they think. As much as we educate ourselves, we will never understand everything. I find myself daily asking, "Why would you do that?" and with no comment, I receive those shrugging shoulders. Fetal Alcohol affected children are the same way, there is no cause and effect processing, many times mischievous behavior is completely spontaneous with no thought behind on the why. I completely feel sympathetic for my children that suffer mentally because life is just too over stimulating. Then being "different" is isolating. Did you know that most of my children don't get invited to a birthday party? I don't remember when the last invite was......only a couple of our children will get phone calls from their friends. Often when I think about how simplistic some of my children's lives are, it's not simplistic at all. It's confusing, and it can be dark with all the unknowns. We use a lot of pictures and life stories to teach some of our children although (for example) with our littlest daughter I find nothing works to teach her patience, and to calm her when she's hiperventaliting because she doesn't understand what we are doing in the grocery store. Our littlest daughter is turning seven this July. Her teeth haven't fallen out "yet" We are starting to read her stories about loosing her teeth, showing her clay models and adding teeth to her puppets with velcro to hopefully adapt "that concept" of loosing her teeth will be "ok" Right now I can't imagine how we are going to get her loose teeth pulled with her sensory issues and lack of understanding. My littlest daughter still doesn't understand nor "cares" to eat. My husband and I maintain her weight daily with 24/7 nibbles and syringing. Right now her weight is maintained but for how long? When she starts loosing teeth, will the changing of her mouth with her sensory issues make feeding worse? A dark unknown. She's turning seven but mentally she's only sixteen months, our little man who is now 29 months has passed her mentally and physically. She's the light of our life, simplistic in many ways but like our fourteen year old, the understanding of choosing a red or blue freezie isn't an option and that makes life challenging. Spending time shopping with my fourteen year old daughter reminded me once again that unfortunately she's stuck cognitively at age four. As much as it tested my patience, it saddened me. She's aging physically and that's it. (Not that I didn't know this) Our neurologist explained everything about many of our children, it just hits close to my heart on every birthday on how mentally nothing really changes. It's hard to think she's fourteen while standing in the baby doll section not knowing what to buy. I don't know what the future holds, I do know my husband and I are here 100% for our children and we will do the best we can; as they will do the best they can throughout their lives.... even if it's in the dark with so many unknowns.

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