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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 (301-307):
thetrollcat
by Meow on Feb. 24, 2013 at 7:30 PM

as you know I am disabled with a hearing loss but I think in a way I am blessed...

I dont know how you do it, to deal with your child every day. I agree with you, no one can possibly compare a parent with a high special needs child. I cannot imagine every day having to watch my child grow and not actually grow and mature like other children. Caring and changing them as if they were still four... Parents like you are extremely amazing. I think it is so sad how many don't even consider the patience, the work, the stress every day beyond just caring for a disabled child.

YOU ARE AMAZING along with others like you.

BTW your daughter is precious. I say this with all my heart.

Cymbeline
by Gold Member on Feb. 24, 2013 at 11:28 PM

The way you view your hearing loss is how I view having Asperger's. :) It may be a disability to some, but to me, it's been a blessing.

Thanks, meow :)

Quoting thetrollcat:

as you know I am disabled with a hearing loss but I think in a way I am blessed...

I dont know how you do it, to deal with your child every day. I agree with you, no one can possibly compare a parent with a high special needs child. I cannot imagine every day having to watch my child grow and not actually grow and mature like other children. Caring and changing them as if they were still four... Parents like you are extremely amazing. I think it is so sad how many don't even consider the patience, the work, the stress every day beyond just caring for a disabled child.

YOU ARE AMAZING along with others like you.

BTW your daughter is precious. I say this with all my heart.


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

Cymbeline
by Gold Member on Feb. 24, 2013 at 11:30 PM


Quoting Anonymous:

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!

This did cross my mind, given the timing of her regression. However, it was not the cause. She has Rett Syndrome. It was caused by a mutation of the MeCP2 in one of her X chromosomes. This was confirmed by a blood test, and could not have been the results of a vaccine. It is caused by a randomly mutated sperm.

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

Fightclmembr
by Silver Member on Feb. 24, 2013 at 11:34 PM
I'm sorry people are so ignorant and frankly, ungrateful!!
I'm thankful everyday for my children's health, even if its not perfect, I know I have been so lucky!
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Amyirene74
by Member on Feb. 25, 2013 at 2:53 PM

I also have a special needs son. He has schizoaffective disorder and possible aspergers. He is a hard child to care for but I can't imagine my life without him. I get alot of judgemental looks from people when he has a meltdown in public places. Because he doesn't look different, people assume that he is a normal child and is just misbehaving. At church that told me to not bring him to the jr high group because he would not follow directions. We have him on SSI and he is in a special school. Fortunately our church recently started some classes for special needs kids so I feel like he is being accepted a bit more there. It's hard when people don't know what is different about your child and think that you are a bad parent or you have a bad kid. 

bethatperson
by on Feb. 26, 2013 at 12:11 PM

Thank you so much for posting! She is beautiful, as you already know. I, too, have a daughter that has special needs. And you are totally correct! We don't want attention or sympathy! Just a little patience and understanding! One of my worst things is when other people (including children and adults) stare or make fun of her! She may not notice but I do! I wish people would try to teach each other some manners. It is very heartbreaking for us to witness this kind of behavior!

xXxLillithxXx
by on Feb. 26, 2013 at 12:20 PM

Thanks for posting and being such an awesome mama. She is lucky to have you and soo so cute!

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