September 19, 2016

No Shame

Posted in AMT's Faves, My Take on Autism tagged , , at 11:13 am by autismmommytherapist

zach-in-a-bath-014

This past Friday I had the honor of having my blog featured on the Autism Speaks Facebook page.  People who took the time to read my post learned about my feelings regarding what will happen to Justin after his father and I are gone (I know, so uplifting!), and as usual, there were many comments on their Facebook page regarding what I wrote.

Many of them were lovely, and I am deeply appreciative of them.  Some were, shall we say, very interesting.

There were the people who told me to have hope which is nice, but my son is thirteen and still likes to cuddle up with me at night and have a bedtime story.  He will not live independently.

There were the individuals who wrote about their high functioning autistic children, many who started out non-verbal as youngsters but are now on the student council, the debating team, you fill in the blank.

If asked, I’d refer them to my bedtime story sentence.

There was an invitation from Rocky to try his all-natural vitamins, as they work WONDERS!

There were comments regarding friend’s autistic kids on the honor roll right next to comments expressing the fact that the writer could never die.

Those latter ones always get to me.

My personal favorite was the person who didn’t understand the point of the post because I didn’t explain where Justin would live for the rest of his life.

Still figuring that one out ma’am.

And then there was this one from a grandparent of an autistic child (one apparently doing very well): “they can learn to take care of themselves if parents would stop doing things for them and teach them to do it on their own. Autistic children are smart. Stop making their disability a disability to them.”

Please.

I promised I’d always be honest with my readers, and I could tell you this one hit me hard or brought out the tissues, but its ridiculous factor simply enabled me to justify eating more chocolate that day.

That’s me, always looking for the positive.

Eight, maybe even five years ago, I would have had a sick feeling in my gut as “mommy guilt” crept in over that therapy/vitamin/shaman I didn’t try when he was a toddler and his brain was still malleable.  I would have forgotten that Justin was diagnosed before insurance picked up the ABA tab, and that I was his primary therapist thirty hours a week for eighteen months before he was eligible for school.  I would probably have glossed over the fact that when we learned his prospective school program was “okay” for him but not ideal that we completely uprooted our family and left the Washington DC area that we loved, for the Jersey shore my husband was not so fond of.

I would have forgotten that for years, and years, (and years!) my whole life centered on helping this child to be as independent as he could be.

I would not have remembered that Justin was, for a time, my entire life.

Now, I’m thankfully past those days of “parent shame” (I stole that from one of the people who responded to Grandma, bravo!), but I’m writing this today for any parents of newly diagnosed children, or those who haven’t been initiated into the autism community for that long.

Never, ever, EVER let anyone shame you into believing you’re not doing enough for your child.

I have two autistic children.  My youngest was born four years after his brother, and quite honestly I can tell you he probably got only half the attention and therapy his older sibling received (Mommy was quite tired by that point).  There were days we actually played therapy hooky, days when going into my fourth consecutive year of therapy with one of my children I just couldn’t pull it off.

I know.  As Cersei would say in Game of Thrones, “shame.”

While my youngest certainly still had a mom passionate about helping him be the best he could be, the absolute focus with which I executed this endeavor with his brother was not replicated with my last child.

And someday, he could be president.  His brother will need someone to care for him until he dies.

I just need to say this, as the mother of two autistic children, and a former veteran educator.  So much of your child’s outcome depends on their innate abilities and their level of motivation.

I’ll say it again.  So much depends on their innate abilities and their level of motivation.

Memorize it.  Please.

Do as much as you can, every day, to help them reach their goals and do as much as they can for themselves.  At the same time take care of yourself, and take breaks (mine include wine and chocolate, shocking I know).

Most importantly, no shame for what you or your child can’t accomplish, ever.

And I mean ever.

 

Follow me on Facebook at Autism Mommy-Therapist

Advertisements

10 Comments »

  1. Amen, Kimberlee!
    -Alan

  2. Susan L. Preston said,

    Dear Kim (and Jeff): You two should never have any shame attached to the care you have given those two grandsons of mine. They are truly blessed to be in your home. You have explored every avenue, suggestion, and therapies that have been presented to you as options. You have eliminated those that clearly do not work–for them—it is a “spectrum” after all, The boys are who they are today because you have worked so hard to give them what works, and is working, for them each day. Both are reaching their potentials daily, and it will be different results for sure. You are the best parents ever for those two lucky boys. Shame on those who judge. Love, Mom

  3. Libby said,

    I haven’t read your post on autism speaks yet but I will. Congratulations on such an achievement. Just want to say, as someone who knows you personally and has seen you in action with your boys, you’ve a been very dedicated, very devoted, HARD working autism mommy. No shame in your game, mama

    • Thank you hon! And if you read the one on AS get some tissues first. Hope you’re well,thanks for reading!

      • libby kesil said,

        Okay. You’ve made me bawl before on the blog so I’m going to take your word for it and get the tissues!

  4. Jen K. said,

    I love your blog and thank you so much for this post! My son is 3.5 year old and was diagnosed almost 1 year ago. I was that feverish mom who had him set up to start 25 hours of intensive ABA the day the official diagnosis hit our insurers desk. I have rearranged my work schedule to transport between ABA and our top notch daycare; between ABA/ OT/ and daycare; gone through the extensive IEP process with our district to get support at daycare. We also moved to another school district a year ago to be closer to ABA clinic and into the district that provides services at our beloved daycare. Then, midyear we found out the nationally renowned autism research facility in our town (part of UW-Wisconsin) was starting their own pilot intensive ABA program and we scrambled and badgered our insurer for months to get him in that program. After all of this I will say that he’s so much more happy, loving and engaged then he ever was 1.5 years ago, BUT he went from about 50% verbal communication to basically non-verbal; from about 30% behind fine motor to having to focus extremely hard to even get him to use a utensil, complete a toddle puzzle, turn that page of a board book, etc. The ABA therapists have been angels and I still hold out hope for return of some skills, but you can only fight significant autistic regression and the onset of some of the most significant Sensory Processing Disorder many of the special ed folks from our district have ever seen (and Madison WI school is a pretty large district!) We have changed his diet, have all kinds of specialists look into his ENT system issues, his sleep issues, etc. I struggle all the time with Mommy guilt -“is there something more I could have done/ could be doing?”, and while I love all the heart warming overcoming autism stories, I do think they can be a bit of a disservice for those us early in the game who can already see a lot of hints that our son does not look likely to end on the high-function end of the spectrum. Also, thank you for the reminder that wine and chocolate help. 🙂

    • So nice to hear from you! It sounds like you are so on top of things, I literally couldn’t think of anything else for you to try. You are being such a wonderful advocate for your son, but remember to take care of yourself too. It is so important! I think we as a community have to tell all sides of the “autism story,” and I try to do that here. I’m so happy for the programs your son has been able to get into, good for you! I wish you the best, and yes, wine and chocolate are key! Thanks for reading!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: