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

 

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8 Comments »

  1. Susan said,

    It was definitely one of the most difficult conversations of my lifetime. In speaking with many of my professional friends who have special needs grandchildren, we share that most difficult experience. We love our grandchildren beyond anything we have ever experienced, so knowing their struggles is heart wrenching. And in the mix of this is our love for our own child who is facing this daunting task and is hurting. Being a cheerleader for all of you is a blessing to me. And I am so proud of all of your successes–boys and mommy. Love, Mom

  2. Daniel Kurz said,

    Your blog is inspirational and shows how much of a dedicated parent you are.

  3. Tammy said,

    How can we talk with you about how u “communicate” with your non-verbal son?–( only asking as I have one myself-6.5 yrs old..understands-EVERYTHING YOU SAY TO HIM!!- but just can NOT get his voice to ” respond”–(??)–we too are doing the therapies-done the vitamins doing b12- shots Q.MO.-ETC…I am his biological maternal grandmother -but I adopted him and his older brother (8 today):)–& I am WILLING TO DO ANYTHING FOR ‘BUBBA’ to learn to SPEAK!
    ANY SUGGESTIONS WILL BE GREATLY APPRECIATED!!
    Mamananny2MANY*
    TAMMY 🙂

    • I would talk to your grandchild’s teacher, and if that doesn’t meet with your satisfaction, make an appointment with the child study team. There’s many different ways for him to communicate, they should be able to guide you. I wish you the best of luck!

  4. Oh this brought tears to my eyes, as my husband and I had a similar conversation with my dad who has taught special education for years.

    You mentioned, “dark few months” was it almost like mourning? Sometimes that’s how it felt like to us but it seemed so dramatic to say so.

    • It was a lot like mourning, and was a necessary process for me. The great part is ten years later I feel I’ve come out to the other side, and I truly celebrate my son and all his accomplishments even though he is severely affected. It’s a process!


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