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One of the saddest things in dealing with Jaimie's form of SPD is that her tactile system is so sensitive and so defensive that it often comes between who she can tolerate being close to. It doesn't mean that Jaimie doesn't feel or doesn't love, she just isn't able to handle the sensations of interacting with others.
For Jaimie it isn't just about you touching her that can bother her; it can be how you smell, how your voice sounds to her, the smell that may be on your clothes or hair or even how your face moves when you speak. From the beginning, though, one person who has gone out of her way to understand Jaimie and her needs has been her Grams (picture above).
It must have been so difficult for Grams. She lives two provinces away from us and is only able to visit her grandchildren about twice or three times a year. Imagine how difficult it would be to finally have that chance to see them and knowing something about your presense could set off your beloved granddaughter. But she always finds some way to do things with Jaimie. She doesn't like cuddling, hugging or tickling games like the other three do. She isn't always comfortable sitting close or in Grams' lap. But Grams will always talk to Jaimie about things she's interested in and zooms in on the one or two things Jaimie LOVES doing and finds a way to join in her that activity. Jaimie has always loved books, for example. Grams does too. So she brings books with her and reads to Jaimie. Last time she visited, she brought little crafts to do and some cookie dough with goodies to put on them so they could all bake together. YAY for Grams!
The point of this post is it can be difficult being the grandparent to a special needs child, especially when that child has severe sensory issues. But there are always ways to 'connect' and grandparents can be an important part of the Sensational Family team.
The following is an article about the importance of grandparents of children with autism written by Shelly McLaughlin from Pathfinders For Autism. She has allowed us to reprint the article here. There are some fantastic points here and I hope it can prove to be helpful to those grandparents out there who wonder how, or if, they are 'doing good'. Guess what? You ARE!
We call these monthly mini newsletters "Parent Tips". Maybe we should actually call them "Tips for Anyone that Cares About a Person with Autism". Grandparents, this one's just for you.
Don't EVER say, "I'm just the grandparent": Autism can be intimidating - it's overwhelming because there's so much out there, yet we struggle to figure out what is relevant for our own kids. So you may feel like you just don't know enough - but neither do we, the parents. Anyone who has a relationship with the child has valuable input.
"You're mean - I'm running away to live with Grandmom": What kid hasn't made that threat? I know I did as a child. And why not - afterall, grandparents are more fun. It's your job to spoil our kids. But for kids on the autism spectrum, consistency is key. Our kids need the same routine when they are with you that they have with us. And that includes giving them the same responsibilities they have at home. I know you're worried that chores may put you at risk for losing popularity points, but trust me - your house is still where our kids want to run away to.
Workshops and research (and you thought you were done with school): You have ideas, opinions, and you bring value to the table with your experience and perspective. And honestly, so often we are out of time, out of energy, and just can't be everywhere. We could trade off attending workshops and committee meetings. When you read workshop descriptions, interpret "parents" as "family". And community committees, like SECAC (Special Education Citizens Advisory Committee), are open to the public. You could also become involved online with autism research. IAN (the Interactive Autism Network) which was established at Kennedy Krieger Institute, has recently launched a survey for grandparents.
Everyone needs support: Support groups are open to everyone whose lives are impacted by autism. I really do believe the best advice you will ever get is from other families. And there are so many support groups out there. Don't limit yourself to the group that is closest geographically. Get on multiple support group distribution lists because sometimes groups have speakers or special presentations that might interest you. To find support groups in Maryland, call 443.330.5341 or search Support Groups on our provider database. If you prefer to connect with an online support group, visit the Grandparent Autism Network.
Once a parent, always a parent: You're a grandparent now, but first you were our parents, and sometimes we still need support and a shoulder to cry on.
Just ask: As parents, we love to talk about our kids. Didn't you like to talk about us when we were kids? We'll tell you what we know. And maybe we'll ask you what you know too (what you noticed about our child, what you've read or learned, etc.). You've raised kids, so we'll trust your observation skills.
Volunteering keeps you young (well, that's the rumor I'm spreading): If you have some time you can spare, there are places that will fight over you. You could volunteer at your grandchild's school, whether it's in the lunch room, the playground, or for a special occasion like a class party. Not only does your grandchild get the thrill of having you at school, but you get a first hand observation of seeing how your grandchild interacts with his or her peers and teachers. There are also organizations that would love to have you, say for instance, an organization I've heard about called Pathfinders.
Safety proofing isn't what it used to be: Sometimes it can be hard to remember that a child who clearly looks old enough to be beyond baby gates might still need child locks. The safety precautions you took when we were kids may not be enough for our kids with autism. I know that when I was two years old I wasn't smart enough to figure out how to undo the child locks - but my son with Asperger's was. At age three he took it upon himself to teach his two year old sister how to bypass the locks. And you need to be mindful of the risks of an eloper. Unless you're still in good enough shape to go racing down the street after your grandchild, you'll want to pay extra attention to your doors and windows. This isn't meant to scare you - I just want to encourage you to have a conversation about ways to safety proof your home that may not be typical for what you did for us as kids.
The kids would love to visit with you: What we need is a break. Every time my mom has offered to take the kids, before she can finish the sentence, my children are on her front porch with suitcases in hand (and I live an hour away from her). Moms - if the grandparents offer, take them up on it. You're still alive, so obviously your mom did something right. Let her watch your kids and go see a movie. Or grandparents, offer to take the siblings so the parents can focus on the child with autism. Siblings can get the short end of the stick sometimes, so they might really enjoy that special attention from you.
Grandmom, when will I see you again?: This can be a difficult question, especially if you live far away. If you know when you will see your grandchild next, mark the visit on the calendar, or put your picture on the date. Also, try to keep in touch in between visits. Ask how the child best communicates - by phone? Does the child (or can the child) have an email account? Would the child prefer to get postal mail?
Parents, you may want to save this article for friends and family whose children aren't impacted by autism. With the current rate being 1% of U.S. children, chances are it may by the time they're grandparents.
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