To say that I’m excited to host a month of interviews from people with cerebral palsy, plus parents of children with cerebral palsy would be a little bit of an understatement! The reason I title this month awareness is because I have received many ridiculous statements before…Example: “Well, she doesn’t look mental” Through these posts, you’ll realize that even though no 2 people with cerebral palsy are the same, we can count on each other for support and empathy.
Today, we get to meet Denise. She blogs at Elijah the Amazing Micropreemie. As with last year, if I feel I need to add my .2 cents or whatever, I’ll type in brackets and italics. Thanks for following along with us!
Elijah
1. Tell me about yourself (and your family!)
We have three children, a 16 year old, a five year old with Asperger’s, and my three year old who has CP and developmental delays, we lost his triplet brothers David (lost at birth), and Lucas (lived to be one month old).
2. How did you become part of this roller coaster life that’s Cerebral Palsy? (either biologically or through adoption?)
Biologically, my son is the only survivor of spontaneous identical triplets, he was born at 24 weeks (1lb 8oz) due to Twin to Twin Transfusion complications.
3. What type of cerebral palsy does your child (or yourself) have?
I am not sure, I have been told that his CP is mixed.
4. What therapies have you tried, or are currently trying?
OT, PT, Speech
5. Did you receive any helpful advice about CP? Or ridiculous advice?!
I haven’t received any advice. It is sort of strange, there is all sorts of support and advice offered for my son with High Functioning Autism, but sometimes I feel like CP is ignored, maybe it is the rural area I live in?
6. At this point, what do you find overwhelming?
At this point I am finding the physical stresses of caring for a almost four year old who can’t walk independently, barely talks, and has no toilet skills very overwhelming. Safety is also a huge factor as he falls a lot.
7. If you were to talk to yourself shortly after diagnosis, knowing then what you know now, what would you say?
I would say be prepared, because I honestly didn’t know what actually was ahead of me.
8. Is there anything that scares you about the future?
We are still not sure about my son’s intellectual abilities. I am afraid that he will be left alone some day with strangers to care for his needs or that someone will take advantage of him or hurt him.
9. If you are a parent, do you take advantage of you time and/or respite?
I do, my son has a EDCD waiver and I use that time to run errands and relax, even if it is just to sit in a bath for a few minutes.
10. What is one thing you wished people knew about cerebral palsy?
I wish people would realize that just because my son doesn’t talk right now does not mean that his intellectual abilities are low. We don’t know about that yet, he may be essentially “trapped” in his own body.
11. How do you cope with “down days”?
Prayer and humor
12. Have you experienced any funny stories through this journey? Or negative?
Not really, the stares and whispers of others used to feel negative, but I know that people usually just don’t know what to say or do, and are usually curious. I hate pity more than anything though.
Gosh you ladies are power moms. My 4 year old is so heavy and I can not imagine carrying him around all day. Also, I dont know how I would handle the whispering and staring. It would drive me nuts. I would be very inclined to stare at the person back and say do you have a question or want to take a picture. I dont pity you ladies, I think you are amazing and could teach the world a few lessons on life.
I have had a question for awhile now and reading this made me think I might get some helpful answers from you Cheryl and your followers:) My twins are two now and they stare and point and say whats that at anything and everything but what really makes them ask are things they don’t see everyday…so when we are at the mall and they see someone in a wheelchair or using a walker they always point and ask…and my answer is thats a little girl or thats a man…if they continue to stare I tell them to say hi. Mostly I want to know what to tell my girls without being rude to the people they are staring at….and remember they stare at everyone you have blue hair they are going to point and scream blue!!
Hi Wendy!
I really appreciate that you are thinking about these issues with your girls. I also have twins and the short answer to your question is treat disabilities like having twins (or more). Everybody knows it’s difficult, but it’s also special and remarkable. Don’t gloss over the difficulty, but whatever you do don’t ignore it either! Just allow your girls to be curious and acknowledge that the person is in a wheelchair or prompt them to ask the person why they can’t walk comfortably. Specific questions (why do you have a wheelchair?) tend to actually be more polite than broader questions (What’s wrong with you?).
Here’s a post I did on it recently: http://www.outrageousfortune.net/2012/02/what-is-disability-when-taboo-is-taken.html
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I too find it frustrating that people assume that nonverbal or not verbal enough equals a low IQ, when there’s no way to really know if the child can’t communicate what they know. They may be composing the next opera for all we know in their heads.
You are so strong. I find it sad that there is not more help or support in your area. I too feel that behavioral and developmental disorders get so much more publicity and attention.
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