I don't mean to be rude, but... What it's like to parent special needs children

Yesterday, I read a Facebook post by a friend of mine. I asked her permission to post it here and she graciously agreed. Here is the expanded version of that post, written by the harried mom of two special needs children. I think it will resonate with many of you. And even if you don't have a child with special needs, it's an important read for all of us.

Anonymous woman in hat by George Hodan

To the Kind Soul Who Complimented My Hat

I'm sorry.

I'm sorry that when you went out of your way to tell me how much you liked my hat, all I could do was impatiently look past you, mumble a thank you, and dash off into the crowd. I promise you, I really wanted to stay and chat, to tell you how much I looked forward to our next book club meeting, and to ask you for the recipe for the potato salad you'd brought to the last church picnic. I do have manners. I would love nothing better than to have a lighthearted conversation with you... or with anyone else for that manner.

I thought that when my kids got older I'd be able to go places and talk to people without rushing in and out, brushing rudely past people who are trying to be friendly and chat. Then, I found out that I have two children on the autism spectrum who required varying degrees of constant supervision. So I still find myself racing through crowds, trying to keep my kids in sight and ignoring friendly overtures. 

I promise you, I'm not being deliberately rude or unfriendly. I'm not arrogant or snobby. I'm worried sick that my hell-bent-for-leather high-functioning son is going to topple a frail, elderly person, or dash in front of a car. Or I'm rushing my Asperger's son out from underneath fluorescent light fixtures before he succumbs to the meltdown he's been hovering on the brink of since we left home.

When I'm looking past you, only half-hearing you, it's because I'm trying to locate my children before they can raid the refrigerator or scald someone with the Keurig. Or, I'm listening to my son's voice, raised in anger and trying to locate him so I can avert the meltdown, argument, disagreement, or fistfight brewing.

If I'm sharp and short with my kids, ordering them to "SIT!" it's because I have been run ragged since before dawn, mediating disputes and having attempts at correction met with rants, doors slamming, violent outbursts or outright screaming matches. While they're sitting there in apparent docility, I am exhausted and on edge waiting for the next melodramatic scene.

The simple joy of going to church as a family is a stressful nightmare for me. Any family outing is as exhausting as hauling a carload of sugared-up toddlers to the zoo and requires the same vigilance.

At the end of the day, I am numb with mental, physical, and emotional fatigue and often near tears. Even though I've been out in public and exchanged brief chit-chat with people, I still feel isolated and alone because I was never able to relax and be completely present. When I do get a chance to sit down and socialize away from the children without having to keep one eye on the clock to pick them up, or one eye on my phone in case I need to rescue the babysitter or other caregiver from a meltdown, I am still stressed, overwhelmed, and left feeling on the outside of things.

So when you encounter me in public, please be forgiving of my awkward social graces, my inattention, my too-eager friendliness. I'm afraid as a result of having kids on the autism spectrum, I am becoming like them. I used to be a normal, interesting, sociable person -- just ask the friends who have known me since before I became a mom to special needs kids.

***

A mom of six and a grandmother of four, Cali Hicks is a former freelance journalist turned SF novelist writing under the name JC Cassels. She is currently raising her second crop of kids with her husband in a century-old house on a mini-farm in a tiny agricultural community in South Georgia. She spends her days writing and trying to figure out where she left her glasses. Visit her blog at pulledporkandprayer.wordpress.com and her website at jccassels.com where you can order her books.

Do it for Ky

When I get in a "complaining about my life" mode, I don't have to look very far to see people who are facing things I can't even comprehend. It's like a slap in the face to me. Knock it off, Hana. 

On Mondays, I usually write about my Sabbath experience. However, today, I'd rather write about someone else.

Ky

Recently, you may have noticed a little widget at the top of the blog that reads, "Ky's Service Dog." Ky is the 2 1/2 year old daughter of a friend of my daughter, Bethany. Ky has Autism, Seizure disorder and Marcus Gunn jaw-winking syndrome (Trigemino-oculomotor Synkineses). An autism service/therapy dog would help Ky in the following ways:

• Behavioral issues -- Since Ky tends to act out in ways which can cause her bodily harm, a dog would be right there to distract/disrupt these behaviors. These dogs are trained to recognize and interrupt them. The dog will also alert Ky's parents when necessary. Since Ky has seizures, this is especially important.
• Speech -- Ky has a very limited vocabulary (which includes the word 'puppy'). Through communicating with the dog with verbal and physical commands, the hope is that Ky's communication skills will expand and improve.
• Social skills -- Ky is often afraid. With a dog to serve as a barrier between her and other people, she will be able to relax into social situations more easily. Bonding with her dog will prove to be invaluable for this precious child.
• Sleeping -- You know what it's like when your child goes through a bout of not sleeping through the night? How would you feel (or function) if your child was like Ky and did not sleep ... period. Her parents give her natural supplements, but they're not much help. A weighted blanket (can you imagine in this heat?) and a weighted teddy bear help calm her, but she prefers having someone in bed with her each night. If Ky gets a service dog, the hope is that the dog will provide enough comfort for her to be able to sleep without any meds or supplements.
• Safety -- We teach our children boundaries as soon as they start to walk. But Ky doesn't understand boundaries. When she's scared or upset, she tends to bolt. A dog could serve as a barrier and keep her from running out of the house or into the street. And, as I mentioned, the dog would be there to alert someone if Ky has a seizure.
• Every day skills -- Walking the dog will eventually give her a sense of responsibility and independence and remove some of the frightening aspects of things like going to unfamiliar places.

Convinced that this little girl and her family would benefit immensely from having an autism service/therapy dog? I am. That's why I gave and I'm sharing this story in hopes that you will give, too. The cost of the dog, along with the training required over the course of a year, is $4,900. The family is hoping to raise $6,000 to cover the additional start up costs (vet bills, spaying/neutering, food, gas to get to training classes and any additional supplies they may need in the first year). Won't you help by donating even a little bit? If all of you gave $10, they'd have their money in no time! 

We are all so blessed by our health, our families, our homes and our stuff. Give a little back. Do it for Ky. 

God bless you for caring.

Hana