Last week I was given the opportunity to speak about Aodhan, and our struggles with him, and our difficulty working through the system to get him help. There is a fundamental problem with our system, and this is true for getting anyone help whether they be a youth in crisis, developmentally delayed or physically disabled, elderly, mental health, chronically ill or so many other things. The system is fragmented. Think about the system as a wheel, a circle of help, all linked like a chain of dolls holding hands. Each agency is great. Each agency is great, but there is no central hub. People are often left running around in circles, never finding the help they need.
Thank you for giving me this opportunity.
I thought a lot about how to convey our experience most effectively and have decided to read you some excerpts that will provide you some vignettes of our life.
November 13, 2013 - It had to be the 13th of the 13th.
So we woke up in the morning and I was not on top of things. Perhaps I was lulled into a dreamlike state by the great day we had yesterday. Perhaps I was just really tired. It was bath day, and Aodhan was in desperate need of a bath. He’d smelled pretty bad for the past couple of days - a mixture of sweat and several bathroom accidents. I had a rule that on bath day, we didn’t have breakfast until he showered and dressed in clean clothes. But Aodhan had woken up before me and quickly put his clean pants over his dirty clothes and wolfed down a bag of chips and the chocolate he had begged me to buy as a treat for after his bath. Now he was dressed and he had eaten. He said “NO bath!” and ran for the door. I couldn’t let him bully me into not bathing. I blocked the elevator and told him to go back to the apartment. His eyes narrowed and he snarled at me. “You can’t stop me, you’re not big enough.” He grinned. I calmly and repeatedly told him to go back to the apartment. He lunged at me and hit me, knocking me to the floor and then kicking me again and again. I screamed and the British couple in the apartment next to me came out. I quickly filled them in on the situation. It turned out that she works with special needs kids and they helped me. They blocked the elevator, and calmly told Aodhan to go back to his apartment. He sat on the floor and refused to budge. I offered to negotiate that he could take everything in the bathroom with him, backpack, sweater, everything. Eventually, after about 20 or 30 minutes, with the help of the British couple, he relented and went back to the apartment.
He showered and changed into clean clothes, and we were able to continue with our day. My knee however, was in severe pain. One of the kicks he gave me had really done some damage. Walking is not so bad. Going up or down steps really hurts, and rotating my leg is excruciating. I am going to have to see a doctor.
It’s all such a blur, these past few years.
My marriage had almost fallen completely apart. My older child never wants children of his own. Ever. He pretty much learned to raise himself, because I didn’t have time. He’s done a fantastic job of it by the way. He was on the honour roll his first year of highschool, and he just finished writing a composition for a complete orchestra. Underneath it all though, there’s a melancholy that can’t be explained simply by teenage angst. We need to spend more time with him. He still needs his mom and dad.
I’ve given up a career of developing groundbreaking automation systems in Medical Laboratories. No more discussing 3D design with CEO’s and Rocket Scientists. Yes, I was someone, Yes, I could have had a rewarding career. But I am someone else now. I am Aodhan’s mother. I am Aodhan’s advocate. I am the advocate for all of the mothers, of all of the children that do not fit into someone’s little checklist.
My world has fallen apart. Is it too late to get it back together? Did I do the wrong things? Should I have put him into school, where he would have been diagnosed and given help, instead of home schooling? I have talked to other people who’s children, with various issues, went to school. One child spent four years sitting at a desk in the hallway. One became self injurious, One youth ended up being arrested and put in jail for violence. These kids were not given help.
That’s the thing about being a parent. You aren’t an expert. You don’t know that this is not the way it’s supposed to be. Everyone says that being a parent is difficult. When you have a child who is born with a visible disability, everyone can see that there is a problem.
When you have a child with an invisible disability, there is a period where no one, not even you, knows. As the child gets older, you start to notice more and more things, and there is a period of uncertainty and denial. People say that you are parenting wrong. Blame, anger, denial, frustration. But no help.
“He is bad.”
“You are a bad mother.”
“Aodhan isn’t Autistic, he is just very badly behaved because of your parenting”
“He would be better if you disciplined him once in a while.”
“You are too hard on him.”
“You are the problem, not him”
“If you just gave him organic, gluten, dairy free food.”
“You are obviously doing something to cause him mental health problems”
“If you just tried the newest homeopathic remedy it would cure him.”
“You don’t spend enough quality time with him.”
“You spend way too much time with him.”
“You put too much pressure on him.”
“You’re too easy on him.”
Aodhan was difficult from the beginning. I knew he had autistic tendencies, and I did my research. I worked with him, and he blossomed. He was articulate, outgoing, and creative. He could win the hearts of people around him with his smile and his energy.
As Aodhan got older, our friends started to slip away. It is not that they didn’t like us, it’s just that Aodhan was too difficult for them to have around, so they found easier relationships.
“I would love to have you guys over, we’re just busy right now.”
“Oh, I’m sorry he didn’t get invited, I just didn’t think he would enjoy it”
“I would love to visit, but your son makes my son uncomfortable.”
“Your child stares at me and that freaks me out”
As Aodhan approached puberty, he began to get even more difficult. We struggled to help him get through his obsessions, but he was getting more bound by them. He was getting bigger, and he was getting stronger. We knew we needed help, and we started researching and reaching out more. Aodhan was almost 12.
There was nothing out there that fit our needs, and Aodhan had no labels. We talked with people at many different organizations. We asked how we could get him labels.
I was calling more fervently now, Someone, anyone, please. Help Aodhan.
“This is awful, you really need help”
“We need to have a Community Table - Service Resolution Meeting”
“Please fill out this pile of paperwork”
“We need more paperwork”
“We lost the paperwork, can you fill it out again”
“We’ll put you on a waiting list”
“You’re still on the waiting list” (One year later)
“We took you off the waiting list because we thought you weren’t interested anymore”
”You seem to be doing a great job, keep it up”
“we can give you counseling, but not Aodhan”
“Our program is not really a fit for Aodhan”
“He’s too old for us to help him”
“Why didn’t you get help when he was younger?”
“He’s too young for us to help him”
“We don’t deal with Autism, just mental health”
“We don’t deal with mental health, just Autism and developmental delays”
“We don’t deal with developmental delays, only Autism”
“We can’t work with him because you don’t have a firm diagnosis”
“We’re not sure who can diagnose him or when”
“We can’t give you a firm diagnosis, because he doesn’t exactly meet the criteria”
“Aodhan is too difficult for us to work with”
“Now that he has a diagnosis, He no longer qualifies for this program”
“We can’t handle Aodhan with our full staff, so please take him home and deal with him yourself”
“I am going to have to report you to CAS because I am concerned about what happened”
“We have no place for Aodhan ... but we may have to place your other child in care to protect him”
“If you leave him here, I will call the police and have you charged”
“You will be charged with child abandonment if you don’t come get your child now.”
“If you force us to put him in a residential situation right now, he will be put with dangerous violent offenders”
06 June, 2014
“No!” he had screamed defiantly. “No!” He had said quietly. “No.” You are not big enough. You are not strong enough. Dad is not here and soon I’ll be bigger than him too”... He just needed a bath. He just needed to be clean. I just needed to get him to eat and bathe and go to bed. It was late, and he was intent on running outside and sleeping in the alley again. Five hours I had tried. Five hours, and I was exhausted. The stale reek of faeces and urine wafted around him.
And now there were seven police officers in my living room. Again. The violence had escalated. Again. There was no where to turn. Again. There was no one to call. Again. I was alone. Again. When will this end? What do I have to do to get help for Aodhan. Everyone agrees he need help. Everyone has tried so hard to help me. But no one can help him. No one is. No one knows who can. Why is this so hard? Why is this so crazy. I know things can’t happen overnight, but it’s been more than 1000 overnights since I tried to get help, and we have had none. I am past the breaking point. I have given up. I feel hollow inside. But Aodhan is my son and I can’t give up. I need to reach down inside of me and find more strength. I need to carry on.
Aodhan ended up in the hospital in crisis. Not that night, but soon after.
Now Aodhan is now in a wonderful group home. I can’t say enough good things about it. He is regaining his childhood. He is blossoming again, and expressing his creativity. He is winning his life back and I can once again see his smile and feel his energy.
Today Aodhan is getting the help he needs to have. But the road was difficult and confusing and we are still only at the beginning. Aodhan will need care for the rest of his life.
Our journey is long, but I feel we are finally on the right path.