This is an autism mom. She is an incredibly loving mother, a truly talented artist, and a magnificent soul.
This week, this is how she Lights It Up Blue.
In her own words:
“It only barely crossed my mind not to post this as my ‘Blue Awareness’ status. My son ended up at an adolescent behavior hospital for 11 days in February. There, of course, they put him on pharmaceuticals. He is only on Depakote now, but I still HATE it.
My son is a sweet, intelligent, fun 15-year-old with an amazing sense of humor, intense empathy at times, and no friends whatsoever, except for his 11-year-old sister. He has had (what often seems like random) intense meltdowns from the very first day of his life, thanks to Rhogam, dental amalgams, the hepatitis B [vaccine], and the MTHFR [gene mutation]. Though his behavior has been better since he’s come home from the hospital, he had a breakthrough violent episode when his sister had thrown his phone in the bushes. I got between them, and in one blow he knocked me down, leaving welts on my eye, a bruise on my elbow, and broken glasses.”
Let’s work together to make sure fewer moms Light It Up Blue, by choosing to LIGHT IT UP TRUE.
~ Blaze
For more by Blaze, click here.
I remember the moment so well ….. my sweet precious boy was gaining on me size-wise. I had taken him with me to a buddhist festival – 2 weeks with a few thousand people who love him dearly. We’d been before – this time it was just the 2 of us from my family – staying in a big nice tent with all his devices. He loves these things – but it is challenging for him to break regular schedule…..It was the first time my baby lost it so bad he got physically violent with me. I lay there sobbing in Childs Pose protecting myself & him because I saw my own knee jerk response to hit back. I just sat on my hands as he beat on me – sobbing and saying, I can’t take care of you if you do this – I can’t take care you 🙁 I’ll have to send you away to a place that can. 🙁
We rode it out……we had a great festival……he’s rarely gone there again. When he does it is amazing to see how much restraint he actually has because you can see it takes everything he’s got not to lash out – and if he can’t stop himself it’s on an inanimate object VERY close to me! ~~May everyone be free from suffering~~
My son is now 18.
He spent 5 weeks of his summer last year in a Neuropsych unit.
They took him through their program to reduce his physically aggressive and self injurious behaviors.
He ended up off many of his meds, Depakote was added.
Since he was hospitalized for a month straight, he showed severe regression in so many areas – ones we’ve worked hard on – toileting, drinking out of a cup on his own, communication.
He couldn’t even drink out of a cup.
He tends to overstuff his mouth, not chew food, and even drinks water too fast where he almost chokes on it.
That is why they worked to try to slow him down when he ate and drank – drinking out of a water bottle or straw.
He was home a month with my mom and I working extensively with him 8-10 hours a day, 5 days q week.
Then back to Neuropsych for a week.
Back home and an ER visit 12 days later.
Our ER is not set up to handle his out of control behaviors and he’s been in a lockdown unit where adults could be detoxing from being drunk or waiting for a transfer because of issues with medications and mental health – and they can be transferred.
My son could not be transferred by ambulance to the Children’s Hospital due to his Autism not being a life threatening situation.
I understand this.
We were able to have family help transport my son.
With me being his mother, I’m the trigger of his behaviors as well as the target of his begsviors.
In the past he has gone after his 14 year old sister.
Now, his step dad helps with him and that has helped with the behaviors.
Today, he did bite his hand at school, but his routine changed and my husband’s parents had taken him to school. He was upset when they left.
When my son’s behaviors are out of control, I know I have to protect him as well as myself.
We’ve both been injured.
I’ve been bitten in the past, he’s bitten himself.
He has torn my skin with his fingernails and both my arms were bleeding, and I was crying because I had scratched him. It wasn’t a bad scratch either.
My son’s Autism is severe, he is nonverbal, he has always had speech and developmental delays.
Physically, he is pretty healthy.
His cognitive skills are low.
We’re taking care of an 18 year old that’s 5′ 10″ and 120 lbs (his weight has been up to 130/140 before that hospital stay) and it is like we’re taking care of a 1-2 year old child or younger.
Last year, I really thought he would not be able to remain in the home with us.
So, I am thankful for the help and support we have for him.
One thing about my son (maybe two), people remember him and he is able to make friends wherever he goes – meaning we run into a lot of nice people.
He can be quite loud and his everyday behaviors and vocalizations can cause people to realize right away that he has a disability.
I ran into someone yesterday that recognized a picture of my son as her child was at the same event and we hadn’t really spoken to her before.
I have gone through my glasses being horribly bent, having my scalp bleed (a barrette scratched it), had handfuls of hair pulled out, been bitten, have had my skin torn and scratched, and been bruised while my son has had out of control behaviors.
I’ve seen a look in his eyes as he’s lost focus.
I know those behaviors cannot be redirected until he is able to focus again.
All I can do is learn about ways I can help my son and I have found things that don’t help.
I’m not the only parent who had no other choice but to admit her child into that Neuropsych unit. I know a few others and their children regressed too.
The truth is that we felt like we had no other choice as we had no other options.
There is something seriously lacking in the services available to children with Autism in our state.
And, I’ve known people who, as parents, have had to step up and start setting up the services themselves.
A group set up a school for Autism with ABA.
Another parent did the same.
My son has had behavior intervention because of these individuals.
It has helped, along with OT, PT, speech therapy, and others.
My son had Early Intervention at age one and was diagnosed at 21 months of age.
I feel my son is more outgoing socially as he is interested in and loves other people.
I’ve tried to access everything I can for him.
I dread to think of what my son would’ve been like had he not had EI, therapies, and behavior intervention.
There is much truth about Autism that many don’t realize.
It can be a huge struggle for the parents that want to help their children, but when I think about it I realize that the child is the one facing a bigger struggle.
My son has smashed three pairs of glasses off my face to date. When he has a meltdown, he seeks to destroy whatever we hold dear or is most costly to replace. Yet that is not my son’s true personality… he is generally a calm individual but loses it when his OCD rituals are interrupted or stopped abruptly. We’ve learned through observation over the years to try to diffuse the situation before it reaches critical mass and when to back off. As he is a healthy mature adult male in his prime, he is now stronger than my husband and I, so violence never works.
I can so relate mum x
So sry, I was given black n blue eyes, bitten nearly through my flesh, beaten on a daily basis. My son was sweet n small n then the schools insisted I put him on meds, his weight went up, his anger levels along w/ the weight. I was afraid for my n his life & finally a place called Pinecrest here in La. came & took him. Its a nice place, he’s already lost 120lbs & is happy. He will be 19 in May & one day he may even come back home but for now its best he’s where he is for all of us.. Especially him, where he cant be bullied & I’m not accused of being a ” bad ” mother.
My heart goes out to this mother.. God Bless her!!