Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

Mom Confessions Mom Confessions

Special Needs *edit in red*

Posted by   + Show Post

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 (31-40):
ittybit2012
by on Feb. 20, 2013 at 10:56 AM
1 mom liked this
She's a very beautiful little girl. I'm appalled by the nasty things I hear in real life and read on here about special needs children.
Posted on the NEW CafeMom Mobile
monica1830
by on Feb. 20, 2013 at 10:57 AM
1 mom liked this

aww she so adorable i have a special needs child myslef she lights up my life she is also in a wheelchair has cerbal palsy feedin tube etc she be 12 in october

Sekirei
by Nari on Feb. 20, 2013 at 10:59 AM

Mama, your little girl is so cute 

and I love this post. <3

Cymbeline
by Platinum Member on Feb. 20, 2013 at 11:01 AM

He is a handsome boy.

Your son's story sounds very similar to what children with Batten Disease endure.While that is a rare disorder, it is more common than what your son has.

Thank you so much for sharing your story. You have an amazing little fighter.

Quoting blondepegasus:

Very well said and your daughter is beautiful. My son's story is similar to yours. He was born healthy in Nov. 2004. I watched him grow and develop "normally" for 15 months. He was walking and talking. Almost overnight he lost all skills. He now utilizes a wheelchair, unable to walk, sit, crawl, or even roll over and he has no head control.  We spoon feed him soft foods because he can no longer chew, though we are so lucky that he can swallow. He lost all muscle strength and control and is unable to toilet or dress or bathe without complete assistance. He cannot even hold an object in his hands. Additionally, he lost his eyesight and is now completely blind, plus he has a heart condition and seizures. He has a condition so rare that less than 10 people in the world have ever been diagnosed with it. It was brought out of domancy when he had an otherwise relatively harmless viral infection at 15 months.

He is the love of our lives. He smiles and laughs and brings joy to our hearts. He wins over anyone who comes in contact with him immediately. He's never met a stranger. As you know, it's a very difficult road but so very worth it. I must admit I can't even begin to imagine what you and other parents of disabled children must endure with people who make rude, derogatory, misinformed comments. I have not encountered that yet. I'm sure it will happen eventually, but we have been so incredibly lucky. He is integrated into a mainstream school and we travel with him often. The only types of comments we receive are how adorable he is and how lucky we are to have him and what a beautiful family we have when we are all 5 out and about (he has 2 older sisters). I have been astounded that in his 8 years we have never been confronted by anyone with anything negative to say. 

Here is a recent photo of my son:



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

annelauer
by on Feb. 20, 2013 at 11:03 AM
1 mom liked this
Thank you. This is a fantastic post!
Posted on the NEW CafeMom Mobile
gizmo538
by Bronze Member on Feb. 20, 2013 at 11:05 AM

 She's a very beautiful girl.

Sekirei
by Nari on Feb. 20, 2013 at 11:09 AM

He is so totally cute!

Quoting britmichele:

Your daughter is beautiful. Thanks for the post. Made me tear up a little.... Here's my sweetie's smile :)


sarahsmommy508
by on Feb. 20, 2013 at 11:09 AM
very beautiful girl you have there!
Posted on the NEW CafeMom Mobile
Koltie6
by on Feb. 20, 2013 at 11:11 AM
My son is 6 and has autism. My family to has endured stares and comments. My oldest daughter 19 is usually quick to snap at whoever is starring or commenting. I had two grown men in Lowes uniforms mock his stimming. But out of all of this my children have learned compassion for others and are mature beyond their years. I take every opportunity to educate the people I come in contact with about Autism. I also remind them with the statistics rising that they too could have a child or family member with Autism.
Posted on the NEW CafeMom Mobile
amylovesnick07
by Gold Member on Feb. 20, 2013 at 11:12 AM
You have such a beautiful girl.
Posted on the NEW CafeMom Mobile
Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

close Join now to connect to
other members!
Connect with Facebook or Sign Up Using Email

Already Joined? LOG IN