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25 November 2007

If You've Ever Wondered What It's Like To Have a Child With Special Needs [More:]I know I tend to go on a bit, but my daughter Alice is absolutely hilarious and it's really interesting to see how things unfold around her.

She tends to be gregarious and at a large function will work a room. She will go from table to table introducing herself to people or introducing me and saying a few words before moving on. She leaves most people feeling just a little bit better about themselves when she moves on. If it weren't completely out of the question, I'd say that politics holds a future for her.

Yesterday, Alice and I went to Home Despot to purchase a finish nailer, so I could finally put the last of the baseboard in the house. While we were there, she said 'hi' to a lot of people and to several added "My name is Alice." (which is new as a complete sentence). She got the attention of an older man and he walked up to her and said 'hi'. She shook his hand with a tiny, "nice mee you" (nice to meet you). He turned to me and asked, "Down syndrome?" I said yes. "How old?" Alice, how old are you? "Four." "Jeffrey's 46." "How's he doing?" "Fairly well - he's living in a house." (house: this is a code word for a shared living space for people with disabilities run by the state). "How's his heart?" (this is a standard question I ask most other parents of children with Ds - there's nearly a 40% chance that they're child had an issue - mine does - it strikes common ground, and is a very indirect way of saying, I'm educated and I know a lot of the issues) "Good - that's why he's lived so long."

We talked for a few minutes about how we both received the diagnoses. I asked him how he copes (I'm still working on that - more on this later). He told me that it's still hard, which is not what I wanted to hear, but from his story it sounds like his son had a harder time than most.

My daughter had the benefit of Early Intervention. This is a state-run program that provides therapies for infants/toddlers with special needs up until the age of three. It is care that is provided in the home and is as much about educating the parents as it is about helping the child. Jeffrey did not benefit from EI.

Down syndrome is a specific diagnosis for of an extra gene on the 21st chromosome. With it comes a number of issues that happen in greater or lesser measure, depending on the child. Mental retardation is always an issue, but to what degree is the question. In addition, you're likely to see low muscle tone, heart defects, leukemia, obesity, vision problems, and so on.

Alice seems to be on the high end of cognition, but was hit hard on the muscle tone side of things. It took her four years to learn to walk, partly due to the muscle tone and mostly due to a stroke at birth.

My friend James from college told me that he believes that the fundamental gene for human kindness is on the 21st chromosome, which is why people with Down syndrome are, well, nicer than most.

Myself, I'm very proud of my daughter and she's done very well. Some of the things she does make my heart soar. The thing is, when I'm around other kids her age, I see the growing gap between them and it hurts deeply. I don't cope well with this, although the pain lessens over time. Of course Alice is a natural healer too.

The man had to go, but he wished us well and planted a big kiss on Alice's cheek.

Here's the thing to tie the subject in through all of this - this behavior from people is astoundingly common. It seems to happen most often when I'm out alone with her. People seem to come out of the woodwork to talk to us. Maybe it's her - maybe it's us and how we behave - maybe it's me. I don't know. People just show up. There was the guy who walked past me in a mall food court who said, "God bless you and all the hard work you do." and walked on. There was the father of an adult son with Down syndrome who said, "hear my words now and believe them later, this will be the greatest experience of your life." It's freaky.

I'm not used to it yet.
I don't always click on people's photo links here, but I never miss yours because I love Alice (and Stuart,too!). Even in pictures, her charisma comes through. I can't see her smile without smiling myself. You're one lucky dad (and clearly, a damn good one).
posted by jrossi4r 25 November | 20:48
It seems every family I've known with a child with Downs Syndrome says the same thing-how much of a blessing these kids are.

Yours is so cute.
posted by bunnyfire 25 November | 20:50
Thank you for this. And say hello to Alice for me! :-)
posted by occhiblu 25 November | 21:03
Great post, Plinth. Thanks so much for taking the time to share your experiences with us. DD children can bring us our most challenging and rewarding times. I just spent Thanksgiving with a DD cousin (DS), and she never ceases to be the absolute life and heart of the party. I love spending time with her, and regret that I don't live closer to her. Tough times lay ahead, without a doubt, but the love that Alice surrounds you with will help cushion the blow, trust me.
posted by msali 25 November | 21:13
She truly seems to be an absolute darling, both from the pictures and the stories you tell. She is so very lucky to have such a loving family. Thanks for sharing, and pics of the kids always make me smile.
posted by SassHat 25 November | 21:37
I had a niece who had Downs Syndrome. She died at 11 months old after surgery to repair her heart, so I know too well about the heart troubles. Thing is, the heart with troubles is just a physical thing. The real heart these children have is greater than anyone can imagine. You're lucky, plinth, with Alice.
posted by eekacat 25 November | 21:44
Thanks for this reflection, plinth. Glad I read it. Your love and principles shine right through and you have a beautiful family because of all those things.
posted by Miko 25 November | 22:09
Thanks for sharing plinth. Big hug to everyone!
posted by gomichild 25 November | 22:44
That is a great post. I really enjoyed reading it. I understand completely what you wrote about noticing the growing gap between your child and others her age, and I concur that it is a very painful thing to see. You write really movingly and well about your beautiful little girl. I wonder if you keep a journal or notes - could be the makings of something special down the line. Thanks for sharing this.
posted by Kangaroo 25 November | 22:46
Scary Frog says hello from the Internet. ;)
posted by jason's_planet 25 November | 23:47
thanks for sharing this. Hugs to you all!
posted by Wilder 26 November | 04:31
Wonderful post, plinth, thank you.
posted by chewatadistance 26 November | 07:29
Thank you Plinth, just beautiful.
posted by goshling 26 November | 08:12
Plinth, I've been wanting to respond to your post, but I couldn't think of anything important to say, except this: Thank you.
posted by brina 26 November | 09:56
And thank you all.
posted by plinth 26 November | 10:07
Thank you.
posted by rainbaby 26 November | 11:31
That was a wonderful post. Thank you, plinth. I always look at Alice's pictures. The leaf ones were great.
posted by essexjan 26 November | 12:55
Alice is such a charmer. I think MetaChat is a better place because of your sharing her with us. Thanks, plinth.
posted by deborah 26 November | 14:16
Lovely post, plinth - thanks! I currently work with (who is believed to be) the oldest person with Down syndrome in the UK, and he hasn't yet developed any signs of dementia at age 60 (yay!). With better medical care for people with disabilities, and with parents, educators and policy-makers with good attitudes Alice has an excellent chance of a long, happy life.

And don't give up on the political career just yet, plinth. Spain and Italy have degree-level university graduates with Down syndrome (I'm not aware of any in other countries, and I'm not having any luck finding the name of the Italian graduate but the Spanish guy is Pablo Pineda) so the future for Alice has never been brighter.
posted by goo 27 November | 13:52
Oops, I meant to include this interview above.
posted by goo 27 November | 14:40
Good lord and I meant England two comments above, not the UK. Gah.
posted by goo 27 November | 15:09
Thanks, goo.
posted by plinth 28 November | 21:36
Watching. || If you make this hat,

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