And Still, I Hope
My son Jack is thirteen years old, and he has autism.
His brain is wired in a different way.
Because of this, he doesn’t read social cues or fully comprehend language or understand why you shouldn’t ask a woman if she is pregnant.
On top of that, he is anxious.
So people make him nervous.
Loud noises make him jump.
He has to check where I am in the house, oh, a million times an hour.
Read the rest of this article here, on the Huffington Post!
April 16, 2018 @ 10:40 am
The Misericordia Home in NW Chicago
might be a place that could help Jack to reach his full potential. It is NOT a “storage” facility, but rather a loving place to inspire confidence and self esteem.
Your articles are so well written and entirely relatable- thank you for sharing
right from your ❤️
April 16, 2018 @ 11:02 am
One of the things that helped us move forward was putting our energy into focusing on my child’s strengths. It may take some detective work and out-of-the-box thinking, but it really helps! At the very least, it adds happiness into the mix, but usually it also means nurturing a skill that will come in handy later.
How about your son’s interest in cooking? Why not go all out and focus on that?
Maybe, you could set up his own kitchen space and get him special bowls, gadgets, or small appliances that he may want?
Maybe watch cooking channels with him and have him try out a new recipe every weekend? Perhaps have him make a schedule for the month as to what he wants to try out. One could designate a month “dessert month” or “international cuisine” or “vegetables around the world.” Of course, cooking lends itself to learning proportions and ratios, fractions and all that jazz as well; not to mention learning about prices and money when shopping.
You could introduce him to what catering businesses are all about. Perhaps, have something catered, just for fun (and learning) and then, you could have him “cater” for a grandparent or another relative. Maybe, help him create his own mini “catering business” for the extended family. He could create a menu and learn about taking orders and time management. It may be fun for him and it may help his self-esteem and self-confidence at the same time.
April 16, 2018 @ 11:12 am
I’m right there with you. Thank you yet again. Love this.
April 16, 2018 @ 11:59 am
Wow, Carrie heartbreaking and powerful. I will offer you some hope from the perspective of a special education team who has to force one of our students through the grindstone of trying to get that HS diploma one of the parents insist this child “will” receive. This student has many skills and areas of cognitive functioning but cannot retain information or focus to get work done unless it is framed in an area of their interest- which would not be writing essays for English class or learning complex mathematical formulas or learning areas of history they are not interested in ( Ancient Sumeria and the Golden ages of China for example) It is a painful, difficult and exhausting struggle 90 % of the time. While it breaks your heart to give up the dream of the diploma, you will be giving your son the gift of freedom to be who he is and not who you want him to be. That is a gift beyond measure. You will look back I think and see how wondrous it was.
April 18, 2018 @ 4:24 am
Thank you for your awesome comment. I couldn’t agree more!
April 16, 2018 @ 1:45 pm
Just wanted to thank you for your honesty and for verbalizing what I think many feel (like me!) but do not say. I also wanted to say that if you ever feel like you aren’t able to hope anymore, that is ok too. I find myself in that place now, but there are enough loving people around me who are “holding hope” for me, hoping on my behalf when I cannot. I imagine you have many people in your life who can “hold hope” for you if even hope itself becomes too burdensome. There has been great freedom and release for me in doing this (and healing, too, I think). So wherever you find yourself today, whatever you can or can’t do today, I will hold hope with you and for you, and for Jack too. Thank you again for sharing your life with us.
April 16, 2018 @ 2:36 pm
I feel for you, even though I am not a parent. I work with kids with special needs and I see your struggle a lot. I used to teach Algebra in a school for children “with complex learning disabilities.” I saw that parents had to get over a huge hump of guilt and denial and grieving to send their children to our school. Then, as an algebra teacher, I saw them having to go through the same painful, difficult process all over again because Algebra is one of the gate keepers to a “real” diploma. It is very, very hard–even just to watch it from the outside, especially in the role of the teacher trying to make sure they can get through that gate.
I very humbly want to offer my attempt to help my parents get through those times, and more realistically to help the other people helping parents. I hope it isn’t too presumptuous of me. http://www.mindsparklearning.com/grieving-the-loss-of-the-ideal-child/
Love and hugs to you and your family and especially Jack.
April 16, 2018 @ 3:05 pm
Hello 🙂 I have a 14 year old with autism. I get what you’re saying. I love my boy to bits too, but the “forever” parenting is not what I signed up for either. I’ll do it, of course, but there are days….. xx
April 16, 2018 @ 7:24 pm
Oh Carrie this is so hard. It took me years to come to terms with. My twins are 28 now, and times have changed but they were diagnosed as “Aspie” rather than Autistic as children, so much more mildly affected than your Jack, although I recognise a lot of what you write about Jack in them, in milder forms.
It took me many years to realise that there was was a lot more needed to achieving academically than pure intellectual grunt (and even interest, because they had that in spades too) – and that they were missing some of those executive function and socialisation skills that were crucial. And that me pushing them in an academic direction was making things much harder for them, especially as they got older and I couldn’t “fill in” for the skills they were missing anymore.
But despite what an outsider might see as rampant “underachievement” (since they’re not even remotely living up to their raw IQ scores) they’ve both found their niches and are happy as clams now. And productive members of society. My more affected son has no HSC (Australian high school diploma) but eventually found somewhere that accepted him for what he is – a stickler for rules, but he also thinks creatively and problem solves like a fiend, and can juggle ten things at once, and his current employer values all that highly, and is happy to pay him very well and work around his limitations (and no, he’s not in the tech industry).
As someone else mentioned already – playing to Jack’s strengths may well be the answer. Whether it’s cooking or something else, maybe it’s time for him to start taking the reins and finding his own unorthodox direction – with help and guidance from you and his teachers. I have a gut feeling that you’ll all be much happier when he finds it.
But it’s oh so hard letting go of our preconcieved notions of what our children “should” achieve. Hugs.
April 16, 2018 @ 7:34 pm
I totally get it Carrie.
I’m exhausted too. But never give up hope .
My son did graduate ?? high school and college (whew!) and today is wanting to move out. Lots to consider, yet he is a “grown ass man” (his words) and this may be a good decision.
I’m stepping back and letting my son move on and make this transition that is if he qualifies in the apartment application process. ?
Meanwhile I say a lot of prayers and take care of myself.
Things get better. They do.
Be brave everyday just like our boys are.
April 17, 2018 @ 9:43 am
I am so with you Carrie, thank you for articulating it beautifully once again. You always make me feel less alone and your Jack gives me comfort that my Nick isn’t alone either.
The hoping and the grieving are so inextricable in this life with Autism and all that goes with being my son’s mom. The ever present exhaustion, the Autism Balance Sheet where every worry crossed off is replaced by 2 new ones, the interminable discussions about meds, the recognition that the boat isn’t moving…you have hit all of the points. Like one commenter suggested, maybe we can all “hold hope” for each other when the holding gets too hard?
I thank you for the gift of sharing the struggle, I hear what you’re saying and appreciate your listening.
April 17, 2018 @ 4:41 pm
Are there vocational or other alternative programs that would work for Jack? The poor guy… I hope there is something out there for him!
April 18, 2018 @ 12:16 am
I know about that ship that is stuck. It sucks. Sometimes ours is stuck and taking on water faster than we can bail. But then somehow we catch a bit of wind and we limp forward, having grieved…again…and adjust our course. Wishing for you a comforting breeze at your back. Thanks for what you do!
April 18, 2018 @ 11:35 am
I am a school counselor and I have a few students with autism. Until I began to read (mostly from a mom’s perspective like yours), I really didn’t have any understanding of how complex it is and how challenging it can be for parents.
Thank you for your willingness to share your story. Sending you a life vest and hug.
Janet Anderson (Grandmother)
April 19, 2018 @ 11:29 am
I will hold hope with all of you, along with prayers. The answer is out there. With tears in my eyes I commend each and everyone of you. Hold on to one another. God Bless.