139. How to Care for a Special Needs Child

How to Care for a Special Needs Child

This is by no means an exhaustive list of ways to care for a special needs child, but it’s just a few thoughts that have grown out of my experience as a SNC (technically I’m an adult, but have become a child again in many ways) as well as my interactions with the special needs children in my life. Obviously I am not the parent of a SNC but Mommy and I have discussed this at length. Anyway, think of these things as a starting point.

1) Care for yourself.
If you’re a caretaker, remember the safety speech flight attendants give before take-off: You’re supposed to fix your own oxygen mask first before helping your child with his/hers. This applies to caring for children with special needs – you’ll be no good to anyone if you’re so harried you’re making yourself ill. Taking care of yourself might require you to accept help from others, e.g. people might volunteer to do things like come and fold your laundry, cook you a meal; or perhaps you might decide the best course of action would be to hire a housecleaning service; maybe you need a mental break and you want to go to the spa or play golf. It doesn’t make you a bad person, or an inferior caretaker for seeking/accepting help or relaxation. It allows you to save more energy/recharge for your primary job function.

Also, if you’re an interested onlooker, be a huge cheerleader for the caretakers you know. A long time ago I read the bio of Nick Vujicic (the young man born without arms or legs, he travels the world speaking and despite his lack of limbs he has impressive mobility skills. He also apparently has excellent balance – I think the cover of one of his recent books shows him surfing. Surfing.). He said that when he was born (I think he was the firstborn, and there had been no indication that the infant would have any issues) no one sent his mom flowers. Now I’m not going to blame any friends of the family for not sending flowers since it’s so hard to know what to do/say in a situation like that – perhaps they thought flowers would have been more upsetting? But I’ve thought about that story for a long time. So I’m re-gifting this beautiful bouquet that I received in the ICU – they’re a little late, but they are in celebration of the new grandson that just joined the family.

Flowers for Nick Vuijic's Mom, FOMO

2) Remember the siblings.
The family that includes a SNC might often find itself dominated by the immediate and admittedly urgent needs of that child. If there are siblings in the mix we don’t want them to get lost in the fray. The siblings are the SNC’s greatest chance for normalcy in that they will need to learn how to “push and shove” as they grow up, like normal siblings do. Also, the siblings can be the SNC’s greatest advocates when the parents aren’t around to shield from playground meanies etc. So whether or not you’re a member of the family, or just a concerned onlooker, remember the siblings and make them feel special, too.

Side note: In case my siblings haven’t figured this out yet, they all fall into the category of people I can never do enough for. I can’t even begin to list the things they’ve taken care of for me that allowed me to move back to our parents’ house and live my outpatient life. Also, I’m thinking of one particular story in which someone showed special kindness to my sister simply because she’s my sister. That one act won my loyalty for life and opened the door for our kind friend to get to know what a funny and lovely person Ai Ai is as an individual.

3) Celebrate the small stuff.
When I first learned to sit up my parents would sometimes Skype with Ernie & Co. while I was sitting in my Physical Therapy chair. One day, Ernie, Karine and Ezra were on the screen and I remember Karine looking at me through the computer’s camera and saying encouragingly, “That’s good sitting, Aunty Ning Ning!”

When I was officially let go from my job I celebrated by hosting a frozen yogurt party for Hannah and Josh since I was staying with them at the time. Celebrating turned a sad occasion into a happy memory.

Being a party waiting to happen (and I don’t even like parties) helps break up the monotony of recovery. And if you think about it, there’s a lot to celebrate. Just be enthusiastic so the SNC can get on board with things as simple as sitting in a chair. An accomplishment is an accomplishment. Let’s call a spade a spade.

4) Make adjustments so that SNCs can help.
This weekend Ruthie asked me to snap the ends off of the asparagus for dinner. I was only too pleased to be able to do this simple but therapeutic task (I focused on my weaker hand’s movement).

I used to be able to reach the washer and dryer from my wheelchair, but since I started walking it has gotten harder since you have to stoop a lot to get things in/out. So Tanpo suggested I wheel Jack, my transport chair, over to the laundry room if I really was bent on doing the wash. Yes, I’m bent on doing the wash because being able to do things around the house is a HUGE notch on my belt as a SNC. Mommy has to get the things out of the back of the dryer for me, but the little helps I receive contribute to me being able to help in my own way.

5) Communicate love and acceptance based on the SNC’s current state.
There is a lot of hope in the way I live since we’re waiting and seeing what the extent of my recovery will be. But I know that if I could only lie in bed (like the early days), unable to even communicate by blinking, my family would love me anyway. It might be the case that a SNC is incapable of “helping” around the house in any way as detailed in #4. In the event that an SNC can’t even squeeze your finger back as you sit by his/her hospital bed, hold his/her hand anyway and continue to talk to them. Even if I don’t get one iota better than I am today, I know that my family loves me because of who I am at present.

6) Cultivate a spirit of thankfulness.
I read the story of a child in another country whose mother carried him to school for 2 or 3 years since he did not have a wheelchair. The problem was that the teachers were beginning to tell this mom that the child was getting too old and too heavy for them to lift around the classroom. That’s when Joni ET’s organization, Wheels for the World, stepped in and provided a child-sized chair for this young scholar.

Seeking medical treatment might be taxing on a family’s resources, but the fact that intervention is even an option, and that there are options to choose from, are wonderful privileges of living in a part of the world where such services are available. I’m not saying you need to immerse yourself in a world of depressing “could be worse” scenarios to cheer yourself up, I’m just saying that concentrating on the “Haves” instead of the “Have Nots” of your life is good practice for everyone.

This is the story behind the flowers pictured above. Also, these lilies are for the lovely Mrs. V, who recently delivered their first child – a beautiful baby boy.

124. I’m Taking Requests

This video is also available at: http://www.youtube.com/watch?v=U7FFJhB0Ick

About a month ago my sister posted a comment suggesting that I do another video of “He Leadeth Me” for public consumption. It took a while but I did. See? I might not always be able to write back, but I appreciate your comments and I read each one. And that’s saying something since reading (and revision) are not my strengths at present. I actually did a little medley – “Man of Sorrows,” “He Leadeth Me,” and “Immanuel’s Land.”

I’ve actually had “Man of Sorrows” playing in my head for a few months now, ever since I saw a video of Joni Eareckson Tada talking about this hymn that changed her life. I can’t find the video now, but you can read/listen to it here. A friend shared this with her (just snuck into Joni’s hospital room one night) soon after she broke her neck. That particular night Joni was grappling with the permanence of her paralysis and the words of this hymn, sung by the sweet voice of her friend, ministered to her heart. This moment didn’t answer all of JET’s questions forever and ever, but this hymn was exactly what she needed to hear at that moment.

I can’t hear that story without wanting to cry my eyes out. Sometimes music is the only thing that can help. I’ve seen it before when I used to bring CDs to Mrs. R at Georgetown. And you can understand why I was so glum when I understood that music had been taken from me as well – and there was no respite to be found at the piano bench. Not that I could sit on a piano bench. I did manage to transfer out of my wheelchair into a regular chair (with arms) that could be scooted up to the piano.

You’ll see one of my early attempts during the first few moments of this video. It goes on for a while longer, but I cut it up. I seriously thought that if I just tried harder and sat there a little longer that “He Leadeth Me” would materialize under my finger tips as I expected it to. Mommy said the saddest moment for her (out of my entire inpatient life) was when she saw me use my right hand to lift my left hand onto the keyboard. I thought the whole experience was sad, but I do have a “saddest” moment that is not piano related that maybe one day I’ll write about, but not yet.

After I try to get my left hand onto the piano my LSRT, K, (Long-Suffering Recreational Therapist) intervenes and holds my arm up for me. The main portion of the video is a slideshow of recovery pictures – A took a bunch for me while M (37) and I worked on a parallel-bar obstacle course. After that we did floor transfers and lumpy walking. That’s my term (lumpy walking) for how M got R (her brother, who was visiting) and A to help spread out ankle weights under mats and then I had to walk on top of them. I was all kinds of sweaty just when we were in the parallel bars, but we did lots of stuff after, too! Recovery is hard work – don’t let anyone tell ya different.

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