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Old 02-09-2002, 04:57 PM - Thread Starter
 
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I was wondering if any of you mammas out there had little ones with birth defects or "disabilities", (for lack of a better word-- I believe that if looked at another way they can be such awsome gifts, instead of disabeling!).

My youngest child, (now 2.5), was born with no fingers on his left hand. His left arm is 10% smaller than his right arm.

My son's little hand has helped my husband and I and our two other children to be much more empathetic, but to not "feel sorry" for the "disabled" person. It has helped me to view their situation as a gift to them, and everyone who is touched by their lives. We feel so blessed to have this sweet little boy in our lives!

My greatest fear is that he will someday be teased about this. I have some ideas on how to handle this, and how to help him handle this, I just DO NOT want that day to come!
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Old 02-09-2002, 06:04 PM
 
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My 4 year old daughter Molly has achondroplasia. A form of dwarfism. Her torso is average size her head is large and her arms and legs are very short.
She has taught me more about love and life then I learned in the whole 37 years before I had her. She is an inspiration to me everyday.
I share your concern about people staring and kids making fun. It has already begun, mostly from adults who should know better. I have actually heard comments like "Look at the munchkin!!!" Or "Wow. I never saw a kid midget" um...they all start out has babies..moron.
For now ,we just help her to be proud of who she is. When kids at pre-school started calling her a baby (she is the size of an 18 month old) we taught her to tell them "I am not a baby. I am 4 yrs. old just like you. I'm just short." So far this works.
When people in stores stare it is harder for me not to lose my cool. But I know she is watching me to see how I handle it, so I try to be careful of how I react, because she will learn to react the same way.
For now if I were you I would take it one day at a time. Don't think ahead too much of all the "could happens". Some how when the time comes you will know just how to make him feel better. If you react mad or sad he will take his cue from you, so try and take it in stride(as best you can)
Whew!! I didn't know I had so much to say about that! Hope I didn't ramble too much.

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Old 02-09-2002, 08:21 PM - Thread Starter
 
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Thanks for responding so quickly Peggy! Usually what I do when I notice adults staring is smile at them, they usually get the message. When Jacob was a tiny baby and children asked "what was wrong with his hand" I told them that he was born this way, and it is how his hand is suppose to be-- that it was how God made Jacob's hand. Usually adults never ask-- just stare rudley, or wisper comments to eachother.

Now that Jacob is old enough to understand what I am talking about I don't explain for him-- usually children ask Jacob, not me, why his hand is the way it is. He doesn't always have an answer for them, sometimes he says just because, most of the time one of my older children, (ages 4 and 6), jumps in to explain for him. (they're a bit protective of him.)

Were you nervous to have another child? We always wanted four children, I still really want another one, but my husband is nervous. Not that he doesn't love Jacob a ton, it's just his own issue I guess. He had a harder time dealing with his hand when he was born than I did. IMO

Tanks again for replying to me!!

Love, Zoe
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Old 02-09-2002, 08:41 PM
 
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Yes, I was nervous when I found out I had concieved Grace. (Surprises still happen even if your 42 and think you know everything about your own fertility! ) We talked to our geneticist and were reassured that the chances of having another child with achondroplasia were about the same as the general population. 1 in 20,000 births. I would have welcomed another child with dwarfism, but I am also glad Grace won't face these challenges (although, who knows what challenges she will face?)
If your DH is nervous, sit down and talk with a geneticist, it can be very reassuring.

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Old 02-10-2002, 02:40 AM
 
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Do the doctors think that what caused your son's arm to be "unique" for lack of a better and kinder word is genetic? I'm curious, but if you would rather not answer prying questions, I understand. When I worked in daycare we had a girl who had severe Cerebral Palsy. She remained in the two year old room until she was five simply because the amount of care she required was better suited to a smaller child/adult ratio. When she turned five her parents demanded that she be moved into the five year old room. The other four teachers all bitched and complained that they didn't want her in their groups. I felt so bad for her. We worked four day weeks, so one of us was the floater and had each group once a week (the tough job), -- that was me. I'll admit that having to deal with everthing from the meds, to her special chair that she had to be strapped into, to the the urine and bowel accidents was rough, but she was just a five year old inside. She had all the love, curiosity, etc of any five year old. Her brain was fine, it was just trapped in a less than perfect body. When I had her group I would lay beside her at nap time and rub her back. I think that most people were so afraid to touch her, that she really appreciated that I cared enough not only to touch her, but to spend time that I could have used to plan lessons or do other teacher stuff, just lying beside her rubbing her back. She also told me that I was her favorite teacher ever because I treated her like she was five years old, rather than treating her like a baby.

Peggy and Avalon, I feel for you children because I know how horrid society can be on anyone who is different. I would feel lucky to know either of your children. A child's hand reaching for you to lead you along is a priceless moment, whether they are able to wrap their fingers around your's or not. Pray that God grant strength to your children rather than showing others how to be compassionate. His job will be much easier that way.
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Old 02-10-2002, 10:53 AM
 
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Thanks Beth!


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Old 02-10-2002, 03:08 PM - Thread Starter
 
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Thank you very much for the reply Beth-- it was very caring. What a sad story about that little girl. If I were her mother I definetly would have wanted her to be in the 5 year old room too! Good for you for being a friend to her. No, Jacob's arm is not genetic. There is a chance in about every 10,000 people, mostly boys, and mostly left arms, to have this.

Love, Zoe
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Old 02-13-2002, 12:20 PM
 
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Quote:
Originally posted by jbcjmom

She remained in the two year old room until she was five simply because the amount of care she required was better suited to a smaller child/adult ratio. When she turned five her parents demanded that she be moved into the five year old room. The other four teachers all bitched and complained that they didn't want her in their groups.
Jeezuz. nearly as bad as Japan

Beth, you are beautiful.

What part of the un-enlightened back and beyond do you live and work? Incredible that such attitudes exist anywhere in the world in this day and age! Let alone the US.

I continue to over-estimate the humanity found in Humanity .

a

The anti-Ezzo king
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