Tag Archives: autism spectrum

Fear is the looming deadline of adulthood

When your 15yo son is wearing the largest shoe size in the house, has hair everywhere including his chin, and can wear your clothes… suddenly, you realize he’s going to be a legal adult SOON.

And that’s when reality grips you in it’s cold, bony hands… Continue reading Fear is the looming deadline of adulthood

I’m tired of autism…

I’m tired of autism. I’m downright exhausted.

I’m tired of people telling me how far my son will go simply because they see his ability to absorb a thousand impressive facts even if he struggles to find productive ways to use them–which is what would make him successful.

I’m tired of people telling me that “If I would just…”, then my son would be “normal” as if he has a behavior problem rather than a neurological problem. All the worse when it comes from another spectrum parent that has a kid with a different flavor of autism than mine and thinks that’s the result of their efforts rather than their luck. Or relatives that see my son once in a blue moon.

I’m sick of people telling me that my parenting is the reason for my son’s behavior and go on to suggest things we have ALREADY TRIED AD NAUSEUM because they REFUSE to believe that we parent this way as a RESULT, not as a preference or an option.

I’m worn out of having parents tell me “But my kid does that, too–it’s normal” as if I have a neurotypical kid and am making him out to be impaired when he’s not.

I’m enraged every time I hear “but look how far he’s already come–he’ll be fine” when the person has zero concept of what life was like during the time of optimal brain development that got him to where he is now, and their complete ignorance at the reality that NONE of those advantages or resources exist for him for the next 4 years before he is legally an adult.

I’m exhausted from nights without sleep wondering if my son will actually be able to overcome any of these things or if he is going to remain impaired and potentially not be able to live independently.

I’m frazzled trying to figure out how to provide for his long-term care if he can’t because we have a hard enough time trying to provide current-day care for him and think about our own future.

I’m frustrated with the lack of resources for kids like my son who are not severely impaired; and the viciousness with wihich parents of more severely impaired look at me for trying to help my son because they “would give anything for their kid to be where mine is” as if I’m an ingrate and my son undeserving of help because he’s not “impaired enough” even though his daily living and long-term independence is impacted.

And I am overwhelmed with anguish when these fears and frustrations come out in ways that make my amazing son feel less than the miracle that he is; and the toll that it takes on his sense of self when he can’t do things that other kids are capable of and we are unable to find things to help him move more freely through the world.

I’m tired of autism. I’m downright exhausted.

#FUA
#beawareofTHIS

I’m every woman… and we are all tired right now

Last night, I was up until 4:15am and then slept until 8:30am.  Because I’m an idiot.  Because I didn’t bit off MORE than I can chew (I did finally grow out of that) but I have bitten off ALL that I can chew.

At the moment… I have no idea how I’m going to make it to Sunday…

Continue reading I’m every woman… and we are all tired right now

A year to focus on executive function

It’s the hot phrase these days, isn’t it?  “Executive function”.  What does that even MEAN, right?  Literally it means “all of the skills needed to execute tasks to meet goals in life”.  And guess what?  My BigGuy doesn’t have any.  Seriously…

Continue reading A year to focus on executive function

The excitement and bereavement of growing up

The most recent teen independence adventure: catch the train, get off at the third stop and go to the $1 movie. Then walk to a nearby friend’s house and eat his packed lunch:  2 GFDF burritos and some salad greens with separate salad dressings–all of which he packed mostly himself but he did not plan. To be fair, he had no clue he needed a lunch until this morning.

I sent him with $3 more than he calculated needing. I knew he needed $1 more because he was underestimating the cost of movie snacks. His goal is to come home with $3 (he self imposed that goal. I don’t care if he comes back with nothing because it’s his money).
On his last jaunt he managed to overcome the overwhelming temptation to spend his return trip train ticket money.

THAT. WAS. BIG.

I’d love to think it meant that he knew I may not bail him out except that we both know I would have gone to get him.  So that means he actually resisted an overwhelming impulse!!!

Let’s tie in the conversation we had the week prior when I went to the bank to get cash for him (from his own account).  We went through the process of adding up what he needed and then tacked on what he WANTED and then he threw on a few dollars “just in case”.  I had to enlighten him to the fact that allowances were on hold because of our family’s continuing underemployment.  We talked about how much he had in his account for these little trips and how many of those trips he could do if he took X-number-of-dollars each time.  Then we talked about how “that’s just trips to play Magic”… it didn’t even consider the many other cool things he liked to do.

His expression was bittersweet.  He got very quiet with the reality of it all.  On one hand, I was heartbroken FOR him.  On the other hand, I was OVERJOYED that he really, truly understood how finite his money was.  He started thinking about what he could (legitimately and realistically) do to make more money… walk dogs, mow lawns.  I physically felt him grow up in that conversation.

All this time I ached for him to understand the gravity and reality of the world he walked through, and now that he had–I was sad for the loss of his childhood.

He took the train with one friend and they returned together later.  He told me that he actually came home with more money than he planned.  Apparently the friend bought a 10-trip pass at a discount and allowed the ticket-taker to punch the pass once for each of them.  Immediately, I directed my son to pay his friend back the $2 train fee and later we talked about his friend being younger and the logistics of making sure we don’t take advantage.  After all, he had the money he needed for the ticket.

I heard about how they opted out of the movie snacks and instead walked past the game store where they play Magic the Gathering–where they bought cheaper candy.

*swoon*

By the time they got back to the “base” house, it was almost time for them to turn around and get on the train.  He called me using his Gizmo and posed this problem to me.  He wanted to stay.  The base-home mama was okay with that and the boy he took the train with was also okay–so they got another hour.  My son asked me to set the alarm on his Gizmo again (he can’t do that) so that it would remind him to head to the train station on time.

They must have eaten and then the boys split into groups.  One group went to the park and my son stayed behind with another boy to draw.

Eventually they made it back.  I picked both boys up at the train station and drove his friend home (they had picked my son up on the way to the train earlier).

It’s becoming “normal” now… this riding the train two towns over to explore the downtown there and our own downtown… It’s becoming “not such a big deal” for him to be without adult supervision.  The novelty of having money in his pocket.  He told me today that he had a plan for funding his trips to the game shop by way of selling his most valuable card to the shop for store credit.  It would buy him at least 8 entry fees to Magic the Gathering and that was worth it for him.  That would free up his actual money for other things.

Again, I am treasuring every moment I can.  I’m struggling under the enormous stress of our family situation and how it plays on my developmental trauma issues, but finding myself managing not to lash out as often as I might have because I am keenly aware of how limited our time is.

For that, I am thankful.

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Building independence skills

I have thought an awful lot about building independence in my kids.  I’ve written about it here and pondered the maturity changes here.  But recently one of the Parenting Partners took it to a whole new level.  One I never thought of before, but needed to.

Continue reading Building independence skills

How to avoid raising an entitled kid…

Many families in my generation and the next generation down have turned their backs on the way we were raised–when children were to be seen and not heard.  Parenting culture was different.  Expectations were different.  We began to respect these little people and recognize them as humans rather than property.  We gave them more freedom to be children and develop at their own pace.  We allowed them to have a voice.

But some of us didn’t do a stellar job at transitioning them into being respectful and compassionate young adults that could do what they were told WHEN they were told to do it and the WAY they were told to do it.  We quite accidentally created very entitled kids…

Continue reading How to avoid raising an entitled kid…

When all of that resolution crap creates a breakthrough

I am one of those people that really enjoys a good introspective workbook.  Like a “transformative change” junkie.  One of the things I find is doing these things over time–over and over again–starts to help train your brain to look at yourself a bit more objectively.  That was really helpful this week… Continue reading When all of that resolution crap creates a breakthrough

“You will never get pity in this house…”

So, these were the words that sparked a longer spewing from Mama today…

BigGuy has, in the last year or so, lamented that nobody in the house pitied him.  I definitely took pause at this when he started saying it and he was right: we didn’t comfort him in his upset as quickly as we were willing to comfort Girly. When I realized this, I was briefly overwhelmed with shame over it. I sat and analyzed why that was–why did we treat him differently??

Continue reading “You will never get pity in this house…”