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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Desperation

A friend sent me a tragic news story about a father of a young man with autism, who had been caring for him alone, and had health problems of his own who had ended up taking the young man’s life before taking his own.

Sadly, this is not uncommon.

Murder and suicide are never the right path, but in order to prevent this type of thing from happening, and in order to make it extremely uncommon, you have to look at why it happened. And you have to look at it compassionately.  To condemn someone who is so desperate that they will end the life of someone they love dearly, as well as their own is too easy.  “There but for the grace of God, go I.”  The human mind is a mystery, and the only part of the human body that still has a stigma attached to its treatment.

This is not new.  Anyone who has read Thomas Hardy’s book Jude the Obscure, for example (or really any of Hardy’s books), knows that people have been making desperate choices when no other options are afforded for centuries. The problem we have to address is the lack of support and resources.

The 1 in 68 are rapidly becoming young adults aging out of a public school system that exits them with virtually nowhere to go.  Any programs or services available are largely hit or miss, or are so abominable, no one would place their child there for a minute.  If you’ve ever scanned the want-ads, you will often find job listings for personal care providers paying minimum wage.  What type of people do you think are attracted to a part-time minimum wage job?  Desperate people. And then we’re back to where we started.

We need a robust plan for our autism community that includes meaningful employment for all on the spectrum, adequate housing opportunities, and comprehensive assistance for families and caregivers who often suffer right along with their children due to lack of sleep, anxiety, and post-traumatic type symptoms. What we have now is not enough, and we cannot expect families and caregivers to endure without tragedies continuing to occur.

How many times will we read the same headlines before we do something?

We Need to Care More About Mental Health Care, Starting in the Schools

I was just watching some commentary on the Navy Yard Shootings that occurred a short time ago, and indeed how mundane these mass shootings are seeming.  No one even appeared to take notice of this last one, and that is really scary.

I’m not going to get into a debate about guns.

But I am going to get on my soapbox for a minute about something I feel is related.

Mental Health Awareness Ribbon

Mental Health Awareness Ribbon

The school where I used to work has one counselor and one social worker for 900 children.  The school where my son is enrolled now has one counselor for 300 children, and no social worker.  (And guess who is often in charge of all the standardized testing in the school?  How much counseling do you think they get done with that on their plate??)  You see, these positions are often the first to get cut or reduced, often to preserve the teaching staff.  And while I don’t disagree that teachers are important, I have seen the children walking through our school doors over the past 20 years.  I have seen how aggressive, how damaged, how out-of-control they have become.  And I have spoken with the parents, the ones who when you meet them, cause you to say, “Now I understand.”

Today’s kids are dealing with a lot.  They are exposed to so much more than in years past, and too often, parents are not on top of it, neither to control what they are watching, hearing, experiencing, nor to help them process that information.  I don’t know if bullying has increased over the years, but I do know that most kids can be mean, and when I say mean, I mean MEAN.  That’s a lot for anyone to deal with.  And then if you don’t have a perfect home-life…

Mental health in this country has always been taboo.  Unfortunately, we are telling our kids that it isn’t that important through underfunding the resources that they need to help them be of healthy mind.  And they are left to deal with the world on their own terms, with virtually no help.

I’m not suggesting that this is a cause of these mass shootings that have become so common, but our attitudes toward mental health don’t seem to have changed, even with the evidence staring us in the face.  And support for our children and their mental health should not be an afterthought, only provided when there is enough in the budget.  Our actions speak loudly to those kids, and right now we are telling them to suck it up and deal.  That’s not good enough.

Not for Wussies

Making a major life change is difficult.  Making several at the same time is not for wussies.

I updated you last week on how we’re doing – quite well, actually.  But not everything is sunshine and lollipops.  I’m still looking for work (not quite in panic mode yet), and I’m finding it insanely difficult to get a driver’s license in my new state.  Combine that with the normal emotions involved with major life changes, and I think getting a little blue is par for the course.

Of course, I am a worrier by nature, so I have this natural tendency to focus on the negative, and can sometimes become paralyzed by it.

I have found that the best way to combat this is to do something.  Whether it’s working on organizing a space in our new home, rewriting my resume, or just doing laundry, accomplishing something tends to keep the stress/tears/freak-out away.  It also helps to cut myself a little slack, and remember my Grandma’s great advice: “All you can do is your best.”

For now, I’m managing the worry and stress, and counting my many blessings and the many, many positives that have come with these major life changes.

Just keep swimming!

English: Regal Tang fish at Bristol Zoo, Brist...

Your Most Pressing Liebster Questions, Answered!

Question Mark Graffiti by Bilal KamoonWell, Meredith from Looking Up With Down Syndrome nominated me for the Liebster Award, and I’m going to attempt to answer a few of her questions today.

1.  Why do you blog?

I have always loved to write.  If I hadn’t taught music, I would have taught Language Arts, because words are my thing.  I get that from my mom.  I also blog because I’m not too far from the bewilderment of getting a diagnosis of autism for my son, and also the crazy, life-altering process that is divorce.  Neither experience was fun, and it was difficult to find resources at first.  It still can be, even in this day and age.  Writing this blog helps me to help others, all the while processing my own learning curve with autism, with parenting solo, with blending a family — all of it!  In my book, it’s a win-win-win!

2.  What are you passionate about?

There are so many people on this planet who have less than I do, whether it’s food, money, resources, opportunities…  I know in my heart of hearts that I was put on this planet to help people, and that’s what I get passionate about.  Over the past several years, I’ve come to believe that while government programs are definitely needed and have their place, nonprofits are going to have to be a part of the solution to the world’s most dire problems, because governments are fickle and changing (and usually broke).  It’s going to all come down to each one of us, helping our neighbors, friends, and fellow humans.

3.  Who do you admire?

I admire everyday people who stand up for others.  I admire the strength of regular people who have so much to deal with on a daily basis.  I admire people who think before speaking, and people who always strive to do their best.  I admire people who keep their word, and people who are compassionate.  I admire people who are non-judgmental, and people who are not too proud.

How about you, dear readers?  How would you answer these questions?

Don’t Knock Awareness

autism awareness ribbon

I keep seeing facebook and blog posts, and tweets stating that awareness is just not enough.

Of course awareness is not enough. Acceptance would be lovely, access to therapies, respite care and services would be grand, assurances that my child will be cared for after I am gone would be divine.  And of course, those of us who have the energy will continue our fight for these basic needs (and yes, they are basic needs, as any family touched by autism can attest).

But, we can’t do it alone.  We need armies of people to help us demand that these basic needs be met.  And we don’t have armies, yet.  We can’t even get our own rag-tag assemblage to march under the same banner — we can’t even decide what our banner should say!

So I say we continue with awareness, and not just some event with a puzzle piece on a poster that says “Autism Awareness Night”.  Puzzle pieces, posters, literature, and every autism family in a 50 mile radius in attendance, so those NT attendees can glimpse the spectrum in all its glory: the sweet smiles, the small victories, the hand-flapping, the meltdowns — all of it.  We cannot rely on large national nonprofits to do the work for us.  We have to get our kids out there.  We have to make our presence the norm.  We have to be unapologetic.  We have to use every teachable moment.

Doing all of that creates awareness.  And awareness is where armies are born.

Meltdowns, Blame & Brains

The glasses we found in Myrtle Beach broke.  In the parking lot to The Boy’s favorite restaurant the other night – the lens had been popping off, and it popped off onto the concrete, and promptly broke into pieces.  He flipped out, obviously upset.  I tried to quickly calm him, but it was a no go.  It escalated, and I had to physically manhandle him into the car.  Then, because we were headed home, everything was my fault.  I broke his glasses by “punching them” with my fist!  I am the “meanest mom ever”!  I “hate” my son, and “want to kill” him as soon as we get home!

Through all this I was silent.  We got home and the harangue continued for a short while.  I sat down and pointedly ignored the ongoing outburst.  He came over to me, attempting a hug, all the the while still blaming me for his misfortune.  At one point he asked what it would take to be allowed to go back to the restaurant.  I told him I needed him to calm down, and I needed an apology.  The first apology I got was pretty backhanded, and so I explained that he had hurt my feelings with the things he had said.  I reminded him that I love him no matter what, and then he apologized for hurting my feelings and blaming me for the broken glasses.  After he had calmed a bit, we headed back to the restaurant and had a nice dinner.  At one point on the way home (again), he said all of the “hims” inside his head had made him think wrong about what had happened.  I asked how many were in his head, and he said, “Millions!”  I said they’d have to be very small to fit a million little versions of him in his head, to which he replied that they were microscopic, and you could only see them with a microscope.

He seemed to be joking, but sometimes the things he thinks up boggle me.  I can’t even begin to fathom how his mind works and processes information.  There’s a video on upworthy about having “empathy”, and “what it can be like for people with autism” – maybe you’ve seen it floating around facebook.  My mom brought up a good point, saying unless it was produced by a person with autism, wouldn’t it just be an NT assumption about what it would be like to have autism?  Yes!… But then The Boy watched it and said, “Hey! That’s just like real life!”

I don’t know if I will ever get used to not knowing what goes on inside that head.

This ultrasound shot of The Boy's Brain is probably the closest I'll ever get...

This ultrasound shot of The Boy’s Brain is probably the closest I’ll ever get…

A Look Back at October

Can you believe it’s November?  Here are some of the top posts from October you may have missed: One of the Toughest Things The irony of autism is its unpredictability, when the person with autism craves predictability… Birthdays Past and … Continue reading

Grief, Beauty, & Inspiration

Grief

Grief (Photo credit: Wikipedia)

My uncle died last week.  He was 80, but it still came as a shock to everyone.  I was not very close to him, but I was sad for my aunt, and for my cousin who has Down’s Syndrome.  They would feel this loss most acutely.

I had decided to have The Boy attend school as usual, as he didn’t really know this uncle of mine, and missing school is a catastrophe.  Better that I go with my parents, and arrange for Fantastic Babysitter to pick him up from kids club so that we wouldn’t have to worry about making it back in time.  Mom and I sat in the family section off to the side, while Dad sat with his sister, who wanted and needed him by her side.  I had a clear view of her and my cousin, and as the funeral went on, I witnessed her grief ebb and flow, and then I watched as my cousin just lost it.  I’m not sure if this was the first time it really hit him how final this was, but he was inconsolable.  And I watched my aunt abandon her own grief, with eyes only for her son.  At one point, she switched spots with another son so that she could sit next to him, and hold him.  He was instantly better, and the two of them were able to share their grief and their comfort in each other.  It was sad, and yet beautiful.

My aunt has been a special needs parent for almost 50 years, and I realized that day what an inspiration she has been for me, since I have taken on that role.  My dad’s brother turned to me at the end of the funeral and told me how proud he was of me, and how strong I was to raise my son on my own.  All I could say was “Thank you,” and look to my mom, and my aunt.  We Tough Cookies are not just born that way.  We are inspired.

Sunday Shout-Out: My New-ish Community

Since I started this blog in July, I have come across some really fantastic people who are also blogging about having kids with special needs, and they have been warm and welcoming.  I am beginning to have a sense of community I have been unable to find until now.  I am taking time this Sunday to highlight some of these people, and their favorite posts of mine, in the hope that you will go and check out their blogs.

Bec Oakley at Snagglebox

Leah Kelley at Thirty Days of Autism

Ellen Seidman at Love That Max

Ariane Zurcher at Emma’s Hope Book

Leigh Merryday at Flappiness Is…

Happy reading!