Monday, July 24, 2017

I get this all the time


The answer is always the same, "I do what I do because it's what I do." Every parent has challenges, mine just seem to be a little more obvious. If I was given a choice? That's the second most asked question. Knowing what I know about raising autistic kids, if I knew before I had kids that they'd be autistic, would I still have them? Well, would I also know about the joys? The hugs and sweet cuddles after the storms? The laughs through the tears? The soft hands taking mine for reassurance when we face new challenges? Hell yeah, I'd do it again.

The last few weeks  have been hard. Challenging. Painful. Teen Queen has been having frequent violent meltdowns. Most autistic kids have meltdowns, to varying degrees, either directed inwardly or outwardly. Baby queen has moderate meltdowns when she's tired, frustrated, sensory overwhelmed. She's self-injurious, head banging walls, doors, floors, windows, furniture. I've patched more than a few holes in the sheetrock where she's headbutted. She also whacks herself in the head with her forearm until she has large callouses and calcium buildup on her arm and forehead. We have an MMA padded sparring helmet that we put on her to keep the damage to a minimum, but it pisses her off even more. TQ doesn't normally have the same frequency of meltdowns, but hers are more violent and directed at anyone in her path. Think of a 5'10", 300 pound, pissed off tornado without reason or the ability to register pain. That's my TQ.

When a meltdown occurs, the reasoning part of the brain is shut down, so talking doesn't do anything but aggravate; your voice sounds like fingernails on a chalkboard. The best you can do is try to get them someplace quiet away from any sensory stimuli, and hold on. I've been trained on holding and takedown techniques, but when you're wrestling with someone bigger, stronger, and insanely pissed, those techniques don't always work. I do my best to keep both of us safe, away from other people and Max. (Max thinks his one job is to protect me, and when she melts, TQ is an enemy. I have to protect them from each other.)

In the last three weeks, TQ has had 4-5 meltdowns a week, a couple severe enough to need sedation. Better living by pharmaceuticals, right? It got to the point we were both so bruised and sore, exhausted and scared, that I got an emergency appointment with her psychiatrist. We sat down and tried to figure out why, all of a sudden, the increase in occurrence and severity; and the therapist came up with something so simple, so obvious, I'm ashamed I didn't see it. She is in flux.

TQ has graduated, aged out, of the only thing she's known since she was three. She's been a student at PISD schools for 19 years. But she knows that's over. Something good is coming up, but it's new, unknown. Unknown is not good for autistic people who thrive on schedule and continuity. Summer break is hard enough without knowing what's going to happen when it's over. TQ is nervous, scared, stressed, and that's a volatile combination for anyone. So we have a starting place, how do we fix it?

There are programs for people who fall in the category of Mentally Impaired (used to be Mental Retardation, but that's changed for a number of reasons). Two things have to happen to access them: the individual has had to have been tested before the age of 18, and they have to go through an intake evaluation before placement. A lot of parents balk at the thought of having that stigmatizing label attached to their child. Denial runs deep. But if you don't get the diagnosis, you can't access the programs. Then you're child is screwed. TQ was evaluated every five years from the age of 6, she has the diagnosis. I sat in the momvan in the garage and cried for almost an hour after the first test. Her intake evaluation was supposed to happen on July 11, but she was in such a state of turmoil, they couldn't complete it. We rescheduled for August 23. Until then, we're preparing her. She can't attend the Borger Area Learning Center until after her IE, but she can go to some of the social events to get to know the other "clients" and counselors. She'll become familiar with the building and people and hopefully some of the stress and fear will ease up over time. TQ went to the first event last week, Wednesday night. The group went bowling and Pizza Hut. There were some nerves, some tears, she crushed my hand for the first 10 minutes; but when a couple of the other young ladies came to talk to her, she loosened her grip. By the end of the evening, I was sitting against the wall watching my oldest angel take her first step into a new world. Yeah, there were tears.

So, knowing everything, would I do it over again? Damn skippy, I would.

19 comments:

Anonymous said...

My condolences for your trials with getting your daughters taken care of. I hope the transition into her new living arrangements becomes much easier.

My son has PDD. He still hasn't aged out yet, but this year will be his last year in high school (we wanted some vocational training for him before he left). He's about 240 lbs, as tall as I am (6'-0") and strong as an ox. He is gentle, does not strike out physically, but verbally pretty rude at times. Especially when it is at odds at what he wants.

I'm lucky though. I remember years back at an autistic individual support group, a parent telling us of what occurred to her son. Because they always gave him what he wanted, he became quite accustomed to getting his way. And when he didn't, he became pretty violent. Violent enough to call in the authorities and take control of him. Her advice - teach them that they always don't get what they want.

Again Angel - my condolences.

Unclezip said...

You are an amazing human being, Angel.

Anonymous said...

Best wishes to you and TQ. Will say a little prayer for you both. gregbee

pigpen51 said...

I have 5 kids, 3 biological and 2 adopted, one of the adopted has autism. She is 20, and will probably be with us for life. We have had her since she was about 3. The 3 biological kids were mine from a previous marriage, and sometimes I could have asked myself if I had to do it over again would I. It is never easy to raise kids, no matter the circumstances. And the joys sometimes are hard to find, when you are going through tough times, but don't you worry, they are sure there. Just like a woman and labor pains, who sees and touches her child, the pain is quickly forgotten.

When I bought a 10$ laptop computer for my daughter with autism spectrum disorder, and she taught herself to program it, and designed a video game on it with music and everything, and took it to school and taught her teacher and her class how to do it as well, she was the happiest girl you could ever imagine. However, within days, she was back down again, as the teachers were poor at their jobs, and allowed the students to treat her bad, as she was a misfit, and the kids picked on her. We fought for her time and time again, taking her from school to school, until finally we simply homeschooled her and let her chase what she was interested in. We found out that she was brilliant, but that she simply could not handle a classroom setting.

I will never know if we did the right thing by her or not, by not forcing her to attend school. But we did what we thought was best, and that's all we could do.

So Angel, you keep on doing the best you can do, protect yourself and you kids, don't listen to anyone who tells you how to raise your kids, and take time for yourself when you need to. All the best.

wirecutter said...

Damn. You and the girls are stronger than I am.

Granny said...

Dear Angel,
My heart goes out to you and I am writing this with tears in my eyes. The strength you have shown puts most of us to shame. Somehow this will all come good, because we can't always see around corners.
With love and support.

rick c said...

You have the Queens for a reason Angel. It's the same reason they have you. Sometimes the wisdom of our Creator is obvious.Prayers for the success of TQ in her new journey and you and BQ as well.

Richard Watson said...

You have the Queens for a reason Angel.

Rick C. is right. God gave them to you because He knew you were the only one who would love them enough.

Matt LBS said...

^^^
What they said.

Anonymous said...

YOU have found wisdom, and strength, for each step, and so YOU will for all future steps. As has been said, it is no accident that YOU have the Queens and they have YOU. As we can never know your depths of pain, so also we can never know your heights of joy....may GOD truly bless YOU, and THEM....


vaquero viejo

Anonymous said...

Angel, for your counsel and encouragement when I first heard Logan was autistic, to your genuine food humor and the love and heart you show - you are a champion. God bless you and the cute chicks always - Grandpa

Anonymous said...

Bless you and yours

Anonymous said...

Maybe this doesn't really apply here, but it has always seemed to me that only the good moms worry about whether they are a good mom or not.
The bad ones never give it a thought.

carol fun said...

You have my utmost admiration... and my prayers. I'm the mom of 27 yr old son with Aspergers. We haven't had any meltdowns for a while but only because I try to keep things as stress free as possible. However I think we've traded the meltdowns to suicidal thoughts and hearing voices which isn't an improvement. I'm trying to stave off schizophrenia as I know this has a higher rate of occurrence in males with autism in this age bracket. I'm also dealing with my son's father who is in a state of denial about Nick and thinks that Nick should get a college degree and a job and get married and learn to drive and that stuff ain't gonna happen. Good thing we don't live together anymore, bad thing he still controls the finances.

Anyway I know what you mean...how do you do it? You just DO it... I'm a mom I do what a mom should do because it has to be done. And we make the best decisions we can with the info we have at the moment. Do we second guess ourselves? Yep sometimes we do but I don't think I've ever made a decision that I didn't believe was in my son's best interests. Hang in there ( I know like you have a choice, right?) A new routine should help, just have to get there.

Would I do it again if I knew? Yes I would. I remember when he was little and was sooooo much work and I didn't know if I could get through another day. Now when my head hits the pillow I thank the Lord that I have him in my life. Now life isn't the way I thought it would be. I'm in my 60's now and he will be with me for the rest of my life. There isn't any retirement or empty nest but I wouldn't be the person I am if it he hadn't been in my life. Sending hugs and prayers and positive thoughts!

PS - I love your blog and enjoy the back and forth between you and Wirecutter!

hiswiserangel said...

Thank you! Much love to you and Nick!

Anonymous said...

Even though yoûr life may be chaotic...you have your shit wired pretty tight.

hiswiserangel said...

Anon 6:11, that has to be the coolest compliment I've ever gotten. Thank you!

pigpen51 said...

Carol Fun,. Scizo affective disorder is not limited to just males. My daughter has that along with her other issues. Challenging, yes, but I have a wife who is amazing, so I think women have a certain biological function that makes them able to just connect with children with these kinds of issues.

Cedar said...

My sister has similar issues to your Teen Queen, and one thing we learned early with her is that she doesn't register pain like other people - and she can't communicate what she's feeling. My mom finally learned that when she was having outbursts, there were sometimes physical underlying causes, which led to a diagnosis of lupus among other things. Medication for the pain really helped my sister. This summer Mom traveled across country with my sister, and my sister was utterly miserable, because she wanted to go home and have her routine back - and she doesn't deal well with being in transition like your daughter. I'm sure you have support, but if you ever want, I can put you in touch with Mom. My sister is 36 now - she's been there, done that.