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Mom Confessions Mom Confessions

Special Needs *edit in red*

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I see the bickering and whining over trivial matters, and raise an eyebrow. I see the incessant derision directed at parents of special needs children, and I wonder why. Of course, the answer to the latter question is that people simply do not understand.

I have discussed my daughter's condition in order to raise awareness, in the hopes that, perhaps, at least one family struggling to find a diagnosis may find their answer. I have not, until this point, mentioned it to make a point.

It is so easy to target parents who struggle in ways you can never imagine. Some might say, "Yeah, well, raising a healthy child isn't easy!".

Well, no it's not. I know what that's like as well. However, it cannot compare to the difficulties and heartbreak of raising a child with special needs. While it can be incredibly rewarding, and it teaches us a lot, it is something entirely different. Most of us don't want sympathy, or to "compare scars", but rather some understanding.

I gave birth to my daughter in May of 2003. She appeared to be a perfectly healthy, adorable baby girl. I watched her grow, smile, play peek-a-boo with her bib, learn to sit, to feed herself, and to even say several words.

Then, things started to change. I watched my daughter slowly lose every skill she had. By four, she was having seizures, was unable to feed herself, hold her cup, or even pick up a toy. She could not walk, and every precious word she once said with clarity, was gone.

Now, at 9, my little girl needs full care in every aspect of life. She relies completely on a wheelchair or lifting to move from place to place. She needs to be spoon fed pureed foods, and a cup must be held in her mouth for a drink. I change her diapers, give her medications, monitor her seizures, and spend most nights sleeping next to her in fear of aspiration.

We see a neurologist, cardiologist, GI, feeding team, and a list of other doctors.

She is very susceptible to pneumonia, and because of a recent bout, we just spent 11 days in a hospital several hours away.

Through all of this, her eyes are so intense, and she maintains her smile, despite being trapped in her own body. Only when her brain cooperates, can she use an eye gaze communication device. Through that, we know she can read, and we know some of her feelings and needs. I will never again hear my daughter's voice, and must rely on a computer to help her talk to us.

I must also live with the fact that, barring some sort of illness or accident happening to me, I will one day lose my child. They tell us our girls can live until their 40s, which is still too early, but countless girls in the Rett community were lost as small children and in their early 20s. I can count at least 9 on my Facebook friends list alone since October.

Even before I encountered this life personally, I had great compassion for parents of children with Autism, Cerebral Palsy, Angelman Syndrome, Down Syndrome, Spina Bifida, and the list goes on. Their lives don't need the extra stress added by dealing with the petty and the ignorant.

I don't want pity, I don't want money, and I don't want attention. What I do want, as parent of a child with special needs, is a bit of patience, understanding, and, most of all, I want other parents of children with special needs to be treated a bit better.

Having a child with very involved special needs has taught me not to worry about trivial things. I spend a lot less time judging, and a lot more time living and appreciating what I do have.


And for an extra cuteness factor, some pictures of my daughter. (I can't resist... I'm a mom)

DD at her birthday party a few years ago

Her royal cuteness just a few weeks ago at Sunday school. Yes, we did temporarily use the back of her chair as a coat rack. It's just one perk of having a wheelchair or stroller



Edit: Since many people are asking about my daughter's condition, I'll explain it a bit here. She has Rett Syndrome, which is caused by a mutation in the MeCP2 in the X chromosome. It predominantly affects females, both because it is an X related disorder, and because most of the mutations take place in sperm.The mutation is rare, and any one in the population has roughly the same chance of having a girl with RS. My ex DH and I both have normal X chromosomes.

Girls with RS develop normal for the first 6-18 months of life, then regress. Many develop seizures and scoliosis. The hallmark of RS is the repetitive hand movements. Some girls wring their hands, and others appear to clap, like my daughter. Many of the girls have their own, unique, hand movements.

It causes digestive issues, heart issues, neurological problems, breathing irregularity, and more.

If anyone wants to know a bit more, I made this video to explain it.


"What is a man, if chief good, and market of his time be but to sleep and feed? A beast, no more."  Hamlet

by on Feb. 20, 2013 at 8:53 AM
Replies (291-300):
OceanGoddess
by on Feb. 21, 2013 at 7:14 PM
1 mom liked this
OMG I am in LOVE!!!!!!!!! Sooooooooooo CUTE

Quoting britmichele:

Your daughter is beautiful. Thanks for the post. Made me tear up a little.... Here's my sweetie's smile :)
Posted on the NEW CafeMom Mobile
Hollythorn
by on Feb. 21, 2013 at 8:35 PM
1 mom liked this

You have such a beautiful little girl! I am also a mom of a special needs child. The doctors don't quite know what's wrong with my son. He was normal until about 12 months. He never crawled and he didn't learn how to walk until he was 3 years old. He knows some basic sign language from school and he has a very limited verbal vocabulary. I first sought out help for him when I realized that something wasn't right and that he wasn't developing at a normal pace. Well, I took him to a geneticist to have him tested for several disorders because I have an extensive family history (angelman's syndrome, cerebral palsy, muscular dystrophy, and a few other disorders that I can't even remember). Anyway, long story short his geneticist was a total witch. At our last appointment she told me this: "Well, your insurance won't pay for any more testing. My advice to you is, is to just give up on finding out what's wrong with your son. You're never going to find out. It's hopeless." That pissed me off beyond no belief. My son is the light of my life. I don't think of him as anything being wrong with him. I just think of him as my little angel. He's so well behaved. He meets no strangers and everyone that meets him falls head over heels in love with him.

RkyMntSFwife
by on Feb. 21, 2013 at 10:12 PM

Your daughter is beautiful!  I have a son with special needs...his name is Ethan, he is 11 years old and he is Down Syndrome and Autistic.  I have a good friend with a daughter with Rhett Syndrome, she is the same age as my son and she is my son's best friend and they are in school together.                                       I just wanted to say thank you for your post!! 

ladybugrooke
by Silver Member on Feb. 22, 2013 at 12:19 AM

She is beautiful and you are as beautiful for being her mother! Ciara is a lucky girl.

OceanGoddess
by on Feb. 22, 2013 at 4:25 PM
1 mom liked this


Quoting OceanGoddess:

She is beautiful!!!

I agree ppl are rude it happens all the time when talking about my son. People always make it about them and tell me that their "normal" child is a challenge too.. They don't realize that I have to teach my child things that you don't have to teach a typical child... An the list goes on..

This is my little guy


7232005
by on Feb. 22, 2013 at 11:44 PM
I was at the store with my autistic daughter and she would not listen and obey me.
a man said, Can't you control your child? I looked at him and said ,NO
Kathy489
by on Feb. 24, 2013 at 4:23 PM

Please report that doctor for the sake of others who will have the unfortunate luck to cross paths with her. 


Quoting Hollythorn:

You have such a beautiful little girl! I am also a mom of a special needs child. The doctors don't quite know what's wrong with my son. He was normal until about 12 months. He never crawled and he didn't learn how to walk until he was 3 years old. He knows some basic sign language from school and he has a very limited verbal vocabulary. I first sought out help for him when I realized that something wasn't right and that he wasn't developing at a normal pace. Well, I took him to a geneticist to have him tested for several disorders because I have an extensive family history (angelman's syndrome, cerebral palsy, muscular dystrophy, and a few other disorders that I can't even remember). Anyway, long story short his geneticist was a total witch. At our last appointment she told me this: "Well, your insurance won't pay for any more testing. My advice to you is, is to just give up on finding out what's wrong with your son. You're never going to find out. It's hopeless." That pissed me off beyond no belief. My son is the light of my life. I don't think of him as anything being wrong with him. I just think of him as my little angel. He's so well behaved. He meets no strangers and everyone that meets him falls head over heels in love with him.


 

Anonymous
by Anonymous 24 on Feb. 24, 2013 at 5:07 PM
Did you try to find the root cause. I would wonder if the regression started after a DtaP vaccine. There's a lot of controversy around it. She is a sweet beautiful girl!
Hang in there momma!
Vegetablepatrol
by on Feb. 24, 2013 at 7:25 PM

 Thank you for sharing.  I am a mother of 2  boys (19 and 13) and  a substitute techer for many years.  For me, subbing is an adventure.  However  if I have  Special Ed. class assigment, I am nervous and anxious, I do not know what to do or expect.  Thankfully, I had the chance to do a long term sub assignment -special ed. class, ages 18-22 with various needs.  My biggest learning that I would like to share with you all is when you get to know the  child with special need, you do not see the disability anymore.  They may not talk (verbally)  but they have a way to communicate their feelings and need to be loved and understood.  I was humbled to discover my own disability as well.  I also conclude that each one of us has our own disability. Most of us know how to compensate and learn to overcome it.  The  more information we know about the special needs, the more we understand them.  Now I overcome my fear and I see them beyond their disability. I like what Temple Grandin's science teacher, Dr. Carlock, said,  "They are different but not less".

squeekers
by Platinum Member on Feb. 24, 2013 at 7:27 PM

 wonderfully beautiful child.

I'm an atheistic Humanist.
I love being opinionated about a lot of things.
SAHM of one teen DD. Married since 1989.
Awarenesses I follow: Epilepsy & Down Syndrome.
I am: Lactose & Alcohol intolerant.
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