February 3, 2014

Grandparents and Autism

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , at 2:39 pm by autismmommytherapist

The following paragraphs are a reenactment of the moment where I first seriously contemplated the fact that my eldest son Justin, then sixteen months old, probably had autism. I came to the realization during a conversation with my mother, a thirty year veteran of special education, after a recent trip to see her and my best friend had raised some “red flags” for her.

The rest of our much-anticipated visit to New Jersey transpired uneventfully. There were a few sporadic moments of connection between all the children, and thankfully there were no major meltdowns from my son, but somehow I couldn’t wait to return to the enclave of our home in Virginia. For me it seemed as if the “cat was out of the bag,” that the conversations and worried glances of my friends and mother had combined forces to legitimate all the nagging fears I had been wrestling with concerning Justin. What I didn’t know when I left was how much my friend shared my concerns, and that she had felt compelled to call my mom to discuss what she’d seen and how things didn’t feel right. My mom unfortunately echoed her fears, and a day or two later with a heavy heart called me to express her worries.

“Hey, sweetie; how was your trip back?”

“Not bad. Justin slept for 100 miles and only cried for three. He just redeemed himself for his entire first year of travel.”

I heard a slight chuckle on the Jersey end of the line, and my mom replied “Great. Glad to hear it. I thought maybe we could talk a little bit about some things I saw when I was visiting.”

Silence ensued, and I envisioned my mom clutching the phone anxiously, dreading the moment when this would turn from a pleasant chat to a life-changing conversation. I took a deep breath and decided to put her out of her misery and responded with “Okay, go ahead,” sensing that for the first time in sixteen long months my mom, a special education veteran of thirty plus years, was finally going to agree with me about my son’s unique “world approach.”

In the space of the next few minutes she cited every example of “different” that she had seen between his birthday and this trip, some of which had been nagging at my soul almost since his birth. She remarked upon his aloofness, the lack of eye contact, and of course the drop-off in the precious babbling, all symptoms that had elicited my deepest fears particularly since they were exacerbated once he’d turned twelve months old. She acknowledged that she had noticed all of these signs occasionally during her previous visits his first year, but what disturbed her this time was seeing so many signs in greater abundance coupled with the absence of relatedness, those little moments that had so endeared Justin to her after spending a week-end with him. Strangely, accompanying the sick feeling in my stomach at her words was a feeling of relief. Finally, finally, someone “got it.”  For the first time I was no longer alone in the suspicion that something was seriously different about the delicate neural pathways of my son’s brain.

At the time that conversation was devastating to me, but it enabled me both to pursue a diagnosis for Justin and to start lining up the therapies he so desperately needed. I was very fortunate that my mother had three decades of experience with special education, and she was instrumental in helping me figure out the labyrinth of Early Intervention Services in both Virginia and New Jersey, where we ultimately ended up residing. My mom was a huge support during those first very dark months after diagnosis, and Justin’s biggest cheerleader after he slowly began to make progress toward the kind, loving, and joyful child he is today. I began “ahead of the curve” when it came to talking about autism with my mom- I know my family was very fortunate in this respect. It’s been almost ten years now since that difficult period, and as I look back now here is what I wish all grandparents in this situation could know and do upon hearing their grandchild has autism.

1) Talk to your son or daughter and find out activities that you and your grandchild can do together that you will both enjoy. If possible take pictures of what you’ll do in advance and create a “social story”, which is a book with writing that explains what the activity is in advance.

2) Wherever you decide to go, try to avoid having to wait during the activity. Waiting is often very difficult for children on the spectrum. Your time together will go more smoothly without a great deal of down time.

3) Always try to connect with your grandchild on his or her level. Children with autism sometimes play with toys differently than neurotypical children. Try to accommodate their needs whenever possible.

4) If you’re comfortable, offer to babysit as often as possible. Many parents will be overwhelmed in the weeks and months following an autism diagnosis and will need a break. If babysitting is impossible, consider paying for a night out for your son or daughter and his or her spouse.

5) Even if you disagree with a course of action your child is taking with your grandchild, be respectful of his or her decisions. There is no road map for autism- your child knows your grandchild best, and needs your unconditional support.

6) Read as much as you can about autism. Attend workshops and seminars whenever possible. The more educated you are about the disorder, the more you’ll be able to help.

7) Always be available to your child to talk about your grandchild’s challenges and triumphs. Your son or daughter may need someone to talk to about their experiences.

8) If possible attend Early Intervention meetings and IEP meetings with your child. It’s always beneficial to have an extra set of ears at important meetings.

9) Remain positive. Autism is not a death sentence; many individuals with autism lead joyful, fulfilling lives. It’s important to remind your child that even with this diagnosis, their child’s future can be a positive one.

10) Make sure you take care of yourself too!  Find a grandparent support group in your area, or simply make time to rest and relax.

For more information regarding grandparents and autism check out “A Grandparent’s Guide to Autism”, an Autism Speaks Family Support Tool Kit

http://www.autismspeaks.org/sites/default/files/a_grandparents_guide_to_autism.pdf

 

Advertisements

May 1, 2011

Time Out

Posted in If You Need a Good Laugh, Life's Little Moments tagged , , , at 9:52 am by autismmommytherapist

“I’m NOT going to time-out!  YOU didn’t go to time-out!” my four-year-old screams at me, enraged I have the audacity to imply it’s been two hours since his last visit to the potty, and he really should try to go. After presenting said request to him, he then proceeded to run gleefully throughout the first floor of our home (and trust me, he’s often faster than me now), screaming my favorite retort, “And you can’t MAKE ME!”.

Hah. You may be four decades younger than me little man, but I will SO win this one.

I scoop up my writhing, wriggling pre-schooler into my arms and carry him to his “naughty chair”, all the while fending off his well-aimed and protesting feet, ignoring his cries of “it’s not FAIR!” (hell, what is?). He slumps into his seat, crosses his arms and delivers his infamous “harrumph!”, and continues his previous diatribe which indicates he’s certain I never went to time-out as a child, so he shouldn’t have to either.

Bad argument, kiddo. I’ve got Grandma on speed dial.

I march back into the kitchen, intensely annoyed at how this afternoon is proceeding (why am I home with him again?), and grab the phone from its cradle. I silently implore my mother to pick up her cell, and thankfully, she does. Without noticing, I’ve somehow traveled back to the living room where my stubborn son awaits me, so I have to hope that my mom will understand the implied message I’m about to impart to her.

She does. Clearly, Grandma’s still got it.

I tell Zach as the phone rings that I’m calling my mom to ask her if she ever put me in time-out, and he grows suddenly still, remembering not only that once his mommy was actually a little girl (a long, long, long, time ago), but that his Grandma is also her mother. He sits up straighter, back pressing into the long black spokes bookended by seat and headrest, and actually unfolds his arms. He remains a non-believer, but at least he is willing to hear this out.

“Hi Grandma”, I say after our connection is made. “I just called to tell you Zachary is not listening today, so I put him in time-out. I told him I used to go to time-out too when I didn’t listen, and he doesn’t believe me. Please tell him it’s true.”

I feel my mother’s pause through the phone wires as she momentarily struggles to remember if she ever actually disciplined me (I was the disgustingly well-behaved oldest child who engaged in more subtle forms of rebellion, the opposite of her younger brother who should have been required to pay rent for the naughty corner). She rallies however and improvises, “Yes Zach, sometimes your mommy didn’t listen when she was a little girl, and I sent her to time-out so she could think about what she did wrong.”

I look down at my son, and see the wheels spinning in his brain. HIS mommy was bad sometimes too?  Grandma has just rocked his world.

He asks to speak to her personally (speaker phone just won’t do), repeats my question verbatim, and seems to finally accept the truth. After my mother admonishes him to be a good boy he hands the phone back to me, I thank her, and disengage the call.

Zach looks me in the eyes and says “I’m sorry”, which when coupled with eye contact is the only time I know for certain he really means it. We reenact our traditional accompanying hug and kiss, and I release him from the constraints of his chair, with the reminder he is to head to the bathroom immediately, all of his own accord. Thankfully he does, because I’m certain I’ve strained something from my exertions around the house and I don’t have it in me to chase him again. Once on the potty Nemo is placated (yup, told my youngest that this funny orange fish likes drinking his pee, and I’m proud of it) and Zach’s impending accident is averted. I smile, because despite the fine sheen of sweat permeating the shirt I will now have to replace on my tired body, I’ve won this round. I’ve just been able to employ vocabulary, history, and rational thought to explain to my son he is indeed required to listen to his mama, and eventually, he complied. For once, with one of my kids, we were actually able to work a conflict through together.

And as far as I’m concerned, I’m keeping Grandma on speed dial.

June 29, 2010

Gratitude Attitude

Posted in Fun Stuff tagged , at 6:35 am by autismmommytherapist

Through my Tuesday and Thursday posts I’d like to provide a more widespread forum for parents, family members, and practitioners of children with disabilities to provide practical tips for parents, as well as a place to share their views on raising a child with a disability. These contributions will be their ideas and stories, and not necessarily reflect the sentiments of those of autismmommytherapist.

——————————

Gratitude Attitude

This week I’d like to thank my mom for all she does for her grandchildren, as well as extend a thank you to grandparents everywhere who are a fundamental part of their grandchildren’s lives. Thank you for all you do!

Tuesday Tips:  “As a grandparent, what can you do to help?”

By Susan Preston

  1. Be a good listener and soundboard for the parents. Be cognizant of the enormous strain and impact that a diagnosis of autism places on a family.
  2. If you can, conduct research to assist during all the decision-making times. Become knowledgeable of the special education rules and regulations that govern special needs children. Parents often don’t have that time when they are coping with the everyday challenges of raising a special needs child. Attend IEP meetings to offer your emotional support to the parents. Remember, you are an important member of the “team” too.
  3. Offer babysitting time, even if it’s only for a few hours, so that Mom and Dad can have some autism free moments to nurture their own relationship. They surely need it!  The benefits are twofold. As a grandparent you then develop your own relationship with your grandchild, as well as assisting the parents. An added benefit is that your grandchild has you all to themselves—no sharing of time required!