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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 (41-50):
cjsmom1
by on Feb. 20, 2013 at 11:12 AM
1 mom liked this
Sadly there are a lot of ignorant people out there. I commend parents of kids with disabilities because it isn't easy.
I work with adults with disabilities and a hospital doctor actually said "she's so beautiful. What a shame".
My friend lives in a small town and the school actually said her dd can't have autism because she can talk.
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ashleyrenee24
by 2ne1 on Feb. 20, 2013 at 11:20 AM
She's absolutely beautiful! When jade was born, I had no idea she would have issues. It wasn't until she was 3 months old did we find out she would be significantly developmentally delayed. I'm not going to lie, it was heartbreaking to watch my friend's child, who is a month older than my dd, learn to walk, talk, and crawl while dd never learned to do that.
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britmichele
by on Feb. 20, 2013 at 11:22 AM
Thank you!


Quoting Sekirei:

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 :)



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lwalker270
by Ruby Member on Feb. 20, 2013 at 11:23 AM

I love your posts!

You have a beautiful girl there!

Lindsey6412
by on Feb. 20, 2013 at 11:25 AM
You made me cry :(
Your dd is very beautiful momma, thank you for sharing this <3
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ashleyrenee24
by 2ne1 on Feb. 20, 2013 at 11:27 AM
For any curious, dd has hydrocephalus, schizencephy, and sept. optic dysplasia.
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Cymbeline
by Gold Member on Feb. 20, 2013 at 11:29 AM
1 mom liked this
She also has extreme cuteness and an amazing and beautiful mom.

Quoting ashleyrenee24:

For any curious, dd has hydrocephalus, schizencephy, and sept. optic dysplasia.
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karamille
by Silver Member on Feb. 20, 2013 at 11:30 AM
5 moms liked this

This is a hot button for me, but more from the financial aspect.  I have a SN child and the medical bill are huge.  Its a huge burdon.  Yes I said BURDON.  I know that's a no-no word for most SN parents because no should ever imply that a SN child because SN children are a gift from God.  Well... my child is not a burdon - he's a little gift from God -  but the way insurance works, it can be a huge FINANCIAL BURDON.  I'm tired of people sticking their head in the sand about goverment funded programs for SN kids.  My husband has a good job.  I am independantly employed as a part time hairstylist/salon owner.  But we have about $15,000 of uncovered medical costs every year just for Ike - on top of our regular deductables, copays, coinsurance payments, and premiums.  So while all these families we know are driving nice cars and going on nice vacations, buying new clothes  - we are paying for therapies, and MRIs our insurance says aren't medically necessary.  We drive vehicles that are paid for in full, but have 150,000 and 250,000 miles on them.  We drive 3 hours away for medical care for our son.  When people talk about cutting programs that help offset the costs of services for SN kids, I get angry.  No one plans on having a SN kid.  Not only is a lot to wrap your head around emotionally, it affects every part of our lives.  Its not like having a gall bladder surgery or taking medicine for your prostate. This is a life-long costs.  I always tell people if you get he surprise of having a SN kid, you had better hope that at that point you are either independantly wealthy or poor enough to get CHIPS or medicaid.  Because if you are in the middle, you may end up getting financially ruined or live just squeaking by instead of being financially comfortable like you were before.  So when people think we should cut social service programs that benefit SN kids, I get angry.  They have no idea how life changes for families.  Just let us live our lives and enjoy our kids without worrying if there's going to be enough space in the special needs preschool or if we are only going to get 5 minutes a day of speech therapy due to school budget cuts.  

alyssaravensmom
by Platinum Member on Feb. 20, 2013 at 11:32 AM
1 mom liked this
She is beautiful! I know exactly how you feel. I find comfort in women I've met online with SN children, because no one around me can relate. Just as I can't fully relate to raising a child who is independent.
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mandee1503
by Silver Member on Feb. 20, 2013 at 11:33 AM
1 mom liked this

Thanks for posting! I feel like in this group I'm constantly having to go into posts to defend our children. It's very frustrating to hear mothers of children the same age as my son complain about such trivial things. I have days when I want to scream at them. I wish Jacob would take his diaper off and run around naked laughing, or would prefer one toy or color to another.

I feel as he gets older the pity parties are coming more frequently, and I stress so much more about what age we will last get to, and did I take enough photos, or hug him enough?

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