On a Different Page

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One of the downsides to living where we live is that it is difficult to find some kinds of medical care for The Boy. Medicaid covers quite a bit, and I am so, so grateful. But not all providers take Medicaid. There is basically one dentist we can go to, who is awesome – Thank heavens! And I have found exactly two counselors for therapy, both a bit of a drive from home.

Since one of The Boy’s major anxieties deals with absences from school (usually other students and teachers, because he never misses school), we eventually settled with the one who offered evening appointments, because missing school when you are anxious about absences is not an option.

The problem is, this counselor claims to have experience with kids on the spectrum, but I’m beginning to have my doubts. She told me last night that her brother has ASD, and I immediately thought of my ex-husband who knew he would be a great dad because his sister had 10 kids (at the time)… correlation not causation.

Red flag #1: She used the word “coddle” when asking if I could have “put my foot down” in the following situation. Grammy, Poppy, The Boy and I were on a long weekend getaway. Our hotel had spotty WiFi that The Boy had difficulty accessing at all. A meltdown was brewing, so we checked out and went to a different hotel. According to the counselor, she thought that I was “coddling” The Boy, and wondered what would have happened if I had “put my foot down.” I looked at her and said, “Most assuredly a meltdown that could have included a violent rage, possibly involving other patrons and property of the hotel.” No WiFi = not an option, and I don’t think there would be too many autism families who would disagree with me.

Red flag #2: She continues to ask open-ended questions. For example, last night, she was pulling cards from a “thoughts-and-feelings” game that you would only find in a counseling office, and gave one to The Boy who was reading them aloud. “What is the worst thing that ever happened to you?” I get that this is commonplace in counseling. Treating patients with autism may require a little more finesse and effort on the part of the counselor to get at what the kid is thinking without him parroting back whatever you said – I’m sure it can be done. Asking him to answer that question? SMH

There have been more, but I think you catch my drift with these two examples. I’ve decided to continue with her because A) there is literally no one else, and B) she doesn’t appear to be doing him any harm, yet. He likes her, and I think he enjoys having another outlet. But I’ll be monitoring the situation closely. She was headed in a very wrong direction regarding something else last night, and if I begin to feel uncomfortable, I will pull him, and we will continue our search anew, possibly driving further to see someone with weekend appointments if such a unicorn exists.

Suffice it to say that access does not equate with quality care, and I wish for the sake of our kids that we Americans cared more.

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Not Easier, Just Different

Mom & The BoyThe other day, I pulled out all of the scrapbooks and went through them, remarking at how little The Boy was, and reminiscing. I think some people look through old photos and are wistful for easier times…

I don’t know about other parents with kiddos on the spectrum, but I don’t miss those times. They certainly weren’t easier.

Back then, I had to deal with diapers, until the age of five.  Now I have to deal with the toilet clogging on a regular basis (Thank you, Intestinal Surgery!)

Back then, I had to deal with The Boy wandering and getting lost in department stores.  Now I have to deal with getting him to get some fresh air and come out of his room.

Back then, he was obsessed with Wubbzy and Mat Man.  Now he is obsessed with Sonic the Hedgehog, and the dome lights of cars.

Of course, our history isn’t entirely one of struggle. Luckily, the blessings of that little Boy continue to make him my joy today.  He is still (even at thirteen!) affectionate, at least at home. He still has a wonderful sense of humor, and is a lot of fun to be around. He is still able and willing to participate in the world around him (as soon as he finishes his game).

Nope, I don’t miss those days — OK, maybe I miss the smell of a baby, the giggle of a toddler, and the ability to pick him up and carry him out if he started fussing. But I don’t miss not having a single clue about autism, or a single person to talk to about it. I don’t miss the what-ifs and constant worry that is only lessened with experience and time.

I’m not saying it’s easier now.  It’s just different.  And now, even if I don’t have all the answers, at least I have a clue. 😉

Acceptance

Sometimes, I look back on my time being a single mom rather fondly.  Doing it on my own was something I needed at the time.  In many ways it was very liberating, and I bonded with The Boy in a way I never could have as a married parent.  And then I remember how lonely it was, as well, when I thought it would always be just the two of us.  When there was no one looking out for me besides myself, money was tight, and I had to fill every adult role. Being ill was completely out of the question because there was no one to take care of either of us.

And then I remember even further back when I was married the first time, and one of my friends tells a story about a time soon after The Boy was born when I was so ill that I called her to take me to the hospital.  She tells the story because I have absolutely no memory of it (funny how the brain works). Yes, I was married at the time, and when my friend tells the story, she says that when she arrived to pick me up, she watched the ex step over me, lying prone on the floor, on his way out to his grown-man basketball league.  I guess I was dehydrated, for which I have gone to the emergency room a couple of times in my life, and apparently he had no inclination to take me to the hospital himself, regardless of the fact that I was very visibly ill, and we had an infant at home.

Some single moms get very vocal and agitated when married moms say they feel like single moms.  I’ve been in both positions and try not to judge.  Life as a single mom can be very, very difficult, and life as a married mom can be very, very difficult, as well.  Both positions can also be incredibly rewarding and satisfying.  And unless you are living someone’s life 24 hours a day, you really have no idea of another person’s challenges.

I find the same type of vocalizing and agitation in the autism community on various topics, and judgement all around. Words like “aspie” and “high functioning” can cause full-throated arguments, as can person-first language, vaccines, Autism Speaks, and even the varying parts of the spectrum and who has it “harder”.

I don’t often swear in my writing, but I call bullshit.

EarthEveryone, EVERYONE on this planet has their own struggles, some more visible than others.  Everyone also has their own opinions.  And there is very little in this world that is truly black and white, right and wrong.  Our diversity and duality make us human, and dare I say, interesting.  We don’t have to agree to like each other, learn from each other, or coexist.  We don’t have to compete for whose life is the hardest – there is no trophy.  But I have learned that experience is the best teacher, and if we can be civil to each other long enough to listen to one anothers’ experiences, there is a lot to learn about our kiddos, ourselves, and these interesting people with whom we share this space on Earth.

Now What?

When you tell people you are engaged, they immediately ask you something along the lines of, “Now what?”: Have you set a date?  Where will you live?  What are your plans????

While I’m not going to say that we haven’t thought about these things (because I am a planner, after all, and that is just who I am), I must say that I’m having a great time just reveling in the feeling of being engaged, of having someone who loves me utterly, who has done one of the most vulnerable and romantic things a man can do, which is propose that we commit our lives to each other.

And perspective is an amazing thing.  I’ve done this before, and it’s almost amusing to look at a bridal magazine and all the infinite, intricate pieces of a wedding that are out there as ideas, and products, and kits, and… whew!  It’s a relief to have this experience behind me that makes me shake my head, laugh a little, and say to myself, “So unnecessary”…

So while I’m thinking about the “getting married” part (which pieces are important, and which pieces just really aren’t) because weddings are fun, I’m also thinking about the “Now What?” after the wedding.  Being a wife, blending a family, the big changes in my life (our lives!), and the one man who loves me enough to take it all on with me.

Have a beautiful day!

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