Remembering Mama

I began my Blog this past August as a sort of salute to my Mom, who passed away in July of 2014.  It’s been a little over a year since she’s been gone and during this time, I’ve missed her more than I could have imagined.  She was 86, and after a 13 year battle with colon cancer and two days in home hospice, she passed away. Those 13 years were not all terrible; it was only the last six months, the last six weeks, the last six days that were unbearable for her….and for us too….those who loved her…….to see her in such pain. If anything, her passing was a blessing.  I only wish she didn’t have to die for her to be finally free of pain. I miss her!

Of course, I miss my Mom…anyone who loses their Mother misses them, no matter how old they are. But what I miss most, and the reason I started this Blog, was her support of me as a Special Needs Mom. I would like to support Special Needs Moms in her memory and having a Blog with an autism and special needs slant seemed like a way to accomplish it.

My Mama was mother to six children and  I am the oldest. She was a Lady, with a capital *L*, but could strike fear in her children just by the tone of her voice. She adored us but knew we weren’t perfect (except for her grandbabies and her one great-grandbaby, THEY were perfect!) and supported us in what ever endeavor we needed her support with.  Parenting was one of those endeavors. And being a Special Needs Parent, I needed her support more than my siblings with the NT kids.

My Kiddo was her first GrandBaby and she adored him. And he adored her right back, kissing her and hugging her (yep, my Autistic Son kissed and hugged his Grandmother without prompting) as soon as he saw her. In fact, while she lay dying that last evening, he wouldn’t leave her side……he planted himself in her recliner the hospice workers left next to the hospital bed, AND WOULDN’T LEAVE. Eventho we thought he would be more comfortable sitting at the picnic table in the back yard with pizza, we couldn’t get him to move. Now that I think about it, that may be the most profound part of this whole story…..an intellectually challenged person not leaving his dying grandmother’s side because HE LOVED HER. An autistic adult loving someone? How can that be? Maybe we all need to re-think what our kids are capable of, no matter how old.

Why did I start the Blog to honor Mama? Because she was the one person to take my side, my point of view, not judging or telling me what I should or shouldn’t be doing or feeling. That’s what I’m trying to do here with this Blog. What she would tell me was what I needed to do to take care of myself. If we take care of ourselves, we can take care of other people….never forget that,  folks!

Take a nap, she would tell me when it was obvious during a conversation I hadn’t slept for days  because of the Kiddo .  She would ask, when I was complaining about Hubby forgetting my birthday, when was the last time you and Hubby had some time ALONE together?   If I whined about trying to do multiple therapies and not being able to get Kiddo to do any of them, she would tell me to take a breath and figure out which one was most important, then do that one.  When I was beating myself up for not doing enough….for The Kiddo, for The Middle Boy, for The Youngest……she would tell me there are 24 hours a day for everyone and why should I expect more from myself  than others do.  When The Kiddo was about 14 years old, I  complained to Mama about him being difficult to get up in the morning in time for his bus and his being grumpy, and she told me he sounded just like my brothers when they were 14…..Kiddo was being normal and I was thinking *autism* and she was thinking *normal 14 year old boy*……made me feel better right away!  When we had to make tough decisions about The Kiddo, she never told us what to do, she and Daddy *just* supported us, no matter what.

So:

  1.  Take a nap.
  2. Try to get away alone for a bit with your Partner.
  3. Prioritize.
  4. Realize there are only 24 hours a day and you are human.
  5. Sometimes behaviors have nothing to do with Autism; it’s just a kid being a kid.
  6. You made the best decision you could under the circumstances.

Take care of yourselves and I’ll be back soon. I’m going to have a big, gooey chocolate doughnut now. Mama would approve!

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Your Autism Cuppa

Over thirty years ago, my eldest son was diagnosed with autism.  Well, not exactly “autism” but he was  close enough to have the doctor tell us if we needed him  to be officially “autistic” to get services, that’s what he would call him.  He’s now, a string of DSMs later, officially “Autistic,” so that’s that.

Before the diagnosis, our friends and family tut-tutted about his development–he wasn’t talking so we must not be talking to him enough. He had trouble making eye contact so there must be something we were doing–or not doing–to cause it.  He rocked and banged his head and stayed awake for days and smeared feces–my fault, my fault. And most of all, it was my fault.  No one else in either of our families had trouble with their babies, so it must be me. Me. Me. Me.  And their criticisms weren’t about me, I was told, but about my First Born–so my feelings being hurt, well, too bad.

After we got the diagnosis–Pervasive Developmental Delay, NOS with autistic tendencies–I thought I would be vindicated.  Nope.  That’s when the real criticisms started. And our families withdrew from anything having to do with us.  There were no Mamas, Grannies, Aunties, Sisters or Cousins who could relate to having a child with differences, or REAL differences, so there was no help or compassion for me or my husband. We were called selfish for having other children. And those children turned out to be GIFTED so we truly were on our own.

Many times during those early years, I wished for what all  my friends with neuro-typical children had–a circle of older parents and family I could sit  around the kitchen table with and talk about my children.  Instead of criticism, I would get understanding.  If something seemed odd to me, I would be reassured it was normal. And someone would occasionally tell me I was doing a good job.

I have made many Autism Friends through the years as a former Autism Society of America local chapter president.  But Son #1 was in Junior High by that time and when I had really, really needed a Sis or a Cuz or an Auntie to hold my hand or help me–literally–get through the night, it was too late. I was coping very well, thank-you-very-much,  without that Circle of Family I had wished for.

Recently, I thought it might be nice to BE that Mama or Granny or Auntie or Sis or Cuz I had envisioned three decades ago and decided to start this Blog.  Maybe I could help all those young parents still finding their way.  Maybe I could give someone hope to know it gets better (or easier) and you CAN have an intact marriage and your NT Kids WON’T be screwed up (too badly LOL!) and maybe your career will be okay if you only work part-time or……….you fill in the blank.

So, pull up a chair.  Pour yourself a cuppa and sit down.  Relax.  Your Autism Cuppa is waiting for you right here.