I cannot impress upon you enough how fortunate I feel to have fellow families tell their stories. To be vulnerable enough to share the deepest wounds and joys that come with raising a special needs child is something that is not easy. These stories are a gift. A gift of education. When we know – we cannot un-know. Read on about Noah and Anne.
LITSP: Can you tell us a little bit about you and the person with a disability that you support?
Anne: My name is Anne, and my youngest child, Noah, is twenty-three years of age. Noah lived at home until just over a year ago, when he moved to his own house. Noah is the youngest of our three children, and he was diagnosed with autism when he was three and a half years old. His diagnosis was revised as an adult and now includes Intellectual Disorder and seizure disorder. Noah is verbal, but not terribly conversational.
LITSP: When did you discover that Noah was living or going to live with atypical challenges?
Anne: Noah’s autism was diagnosed with autism after he had a grand mal seizure and was taken to our local hospital, but we were already on a waiting list to see a developmental pediatrician. I suspected something was up with Noah when he turned three, but it took some time to get an actual diagnosis. Back then, there was not a lot of information about autism in the medical community, and the pediatrician who diagnosed him did not even suggest any course of treatment. In 1998, there were only three articles about autism on the internet, so I did my research at the local library and bookstores, and I read as much about autism as I could.
LITSP: What was your response to this news? How did you feel? What did you do?
Anne: Initially I thought that Noah was only mildly affected, and that he would eventually catch up to his peers developmentally, more or less. I did not know much about autism, and I certainly did not realize that Noah had an intellectual disability as well. When Noah was three years-old, I could not fathom what his life was going to look like twenty years later. The impact his disability would have on his life was revealed slowly over time. Early on, the milestones that were not met were small, but as he grew, the gap between Noah and his typical peers began to widen. It was then that the realization of how different his life would be set in. As he grew, his difficulties became more apparent, and we realised that he would need a great deal of support to live as an adult.
LITSP: What was your physical response to the diagnosis? Did you let things fall as they may or did you work towards a goal?
Anne: We tried some different things when Noah was first diagnosed: sensory integration, auditory training, a gluten-casein-free diet, and play therapy. Eventually, however, we decided to do an Applied Behaviour Analysis (ABA) program. We began a home-based ABA program in our home. Our school system was not really prepared to teach academics and functional skills to Noah, so we trained at home all of the people who were hired to be his educational assistants at school. They continued to run his ABA program at school; this program ran, at home and at school, for fifteen years.
LITSP: How did this work for you? What were the challenges? What were the wins?
Anne: ABA was definitely the best way to teach new skills to Noah, but we experienced lots of push back from the school system. Although the official policy in the school division where we live is that of “inclusion”, we found that Noah was expected to participate in school life even when he could not cope with it. The onus was always on him to make the accommodations, even though he was the one with the disability. We also found that teachers did not like to take advice from non-teachers, so we struggled to get them on-board with working with the Behavioural Analyst who ran our ABA program and with following through with that program. Some teachers went so far as to refuse to have Noah in their classroom, because they did not “agree” with ABA. Despite issues with the school, Noah was able to learn — a lot. In his first year of high school, he was the least verbal student in his classroom, but he surprised his teacher by being at the top of the class in terms of demonstrable academic skills.
LITSP: Tell us a bit about Noah. What does he love? What does he not like?
Anne: Noah is adorable (said his mom). He is usually quite happy, easily compliant, and easy-going, and he can be very silly and funny. He is an excellent swimmer, he also loves bowling, being outdoors, and seeing animals. He especially enjoys birds, small dogs, cats, and ferrets. Noah loves family gatherings, and getting together to go out for Chinese food. He likes quieter places; he is not a fan of crowds. Currently, in his day program, Noah does some paper shredding and cleaning at the office of the agency that supports him. He is well liked there, and it is evident that he feels that he is part of that community.
LITSP: Well I agree …. Noah is adorable! What does a typical day look like for Noah? What does a typical day look like for his supporters?
Anne: Noah lives on the main floor of a shift-staffed house, which is just outside of the city with a big yard. During the week, he attends an individualized day program, where he has an ABA-type program that runs all day. He does some office work and cleaning, some academics, and some leisure activities. When he is at home, he goes for walks, throws the basketball in his back yard, plays video games, watches TV, does chores, or listens to music.
LITSP: What is the biggest challenge you believe Noah faces?
Anne: Although most of the time, Noah is an easy-going guy, he has a lot of trouble with emotional regulation. The once-occasional meltdowns he had as a child increased in frequency and intensity by the time he reached puberty. What had been inconvenient and annoying tantrums became over-the-top aggression, that often left us with injuries and damage to property, including holes in the walls of our house. This aggression was, by far, the most difficult aspect of Noah’s disability. It impacted our life in a big way. We sought help for Noah; we tried medication, and we stuck to a solid behaviour plan, but despite our best efforts he continued to have these meltdowns.
Managing Noah’s outbursts was a constant theme in our house, and over time it curtailed our activities with him. When Noah became aggressive in public, we had to restrain him so that he did not hurt himself or damage property (of note is that he rarely, and only incidentally, hurt someone he did not know), and that was embarrassing and distressing for everyone on the scene. Noah’s sheer size (6’5”, 300 lbs) and strength meant that he needed more than one person with him at all time. During the last five years that Noah lived at home, we tried to tailor our lives so that at least two of us could be with him when he was out of school. Simply stated, it was a difficult time. In his residential placement, Noah is staffed at a ratio of 4:1 – literally four large, full-time paid men with him at all times – which is very uncommon, but it is what Noah needs for him, and others, to be safe.
LITSP: What is the biggest challenge you face as you support Noah?
Anne: When Noah first started having meltdowns at school, I would get a call to come and pick him up and take him home, and he would be allowed to return to school only the following day. While I was sympathetic to the school not wanting a disruptive student in their midst, having Noah sent home did nothing to change his behaviour. I had to struggle to keep Noah occupied for the balance of his day, and I had to take time off of work; in effect, I was being punished by the school, not him. Noah relied on the structure and routine of his day at school, and disrupting that made him very anxious. Ironically, Noah’s anxiety about the possibility of being sent home led to his melting down more frequently. Navigating this issue with the school took years, and more meetings than one would imagine possible. Eventually, but only in the last two years of high school, Noah was allowed to de-escalate at school and to remain there to continue on with his day.
When Noah entered the adult disability system at the age of 21, I learned that it is not that uncommon for individuals with autism to have challenging behaviours with which families cannot deal on their own. Unfortunately, there are limited resources out there for someone with his needs. We knew that emergency foster care was possible (although it was never raised with us by his Family Services worker as an option): while parents should not have to terminate their parental rights to get help, many end up doing just that because the strain and expense of tending to the needs of a young adult with a disability is too great. We kept Noah at home, but it was not without personal costs, both emotionally and financially. If I had to do it all over again, I imagine that I would be more insistent when I asked for help. This thought especially hits home having seen Noah move out and having had his needs assessed: that he is now resourced with four full-time staff throughout the day puts the last decade of our lives into perspective.
When he turned 22 years of age, after an almost-four-year-long wait, Noah was finally able to move into a shift-staffed house. We partnered with an agency that had strong clinical supports, and which specialized in working with people who had challenging behaviours. Noah has been happy in his new home, and living with a good behavioural plan to manage his escalations has made his life better. His house has been set up just for him. He lives ten minutes away from our home, in which he grew up, and we see him several times a week. I talk to him daily on his iPad. We continue to have regular input into his care.
While I cannot imagine a better setting and situation for him right now, it has been a hard, uncertain, indirect road to get here. I feel relief from the stress of managing his meltdowns; on the other hand, there is perennial grief that he no longer lives with us. The change has been, and still is, hard.
LITSP: What does the future look like for Noah? What are his hopes and dreams? What do you hope and dream for them?
Anne: We want Noah to be happy, so all our planning for his future has been geared toward that outcome. We see him living a good life, and doing things he likes to do.
LITSP: Who are some heroes you have encountered in Noah’s life? Who would you give a shout out too?
Anne: It is impossible to single out any one person as a hero, as we have been fortunate in terms of partnering with some excellent people. In running an ABA program, we gained a team of people, some whom came into our lives briefly, and others who came and stayed. One of Noah’s EAs worked with Noah at school for 11 years, and still visits Noah at his home. Another former ABA tutor went on a road trip with us last spring, along with her five-year-old daughter, and we attended yet another former tutor’s wedding. These people were hired to work with Noah, but we grew to love each other like family.
Noah has two older siblings, who have been a part of this journey for most of their lives (and all of his). Both have become remarkable young adults, training and working in professions in which they help others, and each having worked closely with other individuals with special needs. I could not be more proud of them.
My parents have always been a part of Noah’s life, and sleepovers at their house have given way to their visits for supper at his house.
For the purpose of this blog, I give a shout out to my Autism Mom friends. It is important to find a tribe so you have a place to vent, or cry, or celebrate. My Autism Mom friends are brave, hilarious, and loving.
LITSP: What do you fear the most?
Anne: I think that we all have fears about our children, even our neurotypical children. While Noah is quite vulnerable in some ways, I try not to let my fears about the future take over my thinking. My husband regularly reminds me that to worry about something will not make it less likely to happen.
LITSP: What are you most grateful for?
Anne: Besides family, I am grateful for the team of people working with us and advocating for Noah as a young adult.
LITSP: What do you wish everyone who does not support a loved one with a disability knew? What message would you love to give?
Anne: People have said that we are “amazing parents”, or impress on us that they “could never be like you guys”. I wish they wouldn’t say that. We did not choose this path; we learned to be parents, and to cope with sleepless nights like any other parent, and to have hopes and dreams for our children. Having a child with a disability does not ennoble us. If we inspire you, great, but you do not need to share that with us. I appreciate that the intention in sharing that sentiment is genuine, but sometimes this declaration of admiration feels like others are being thankful that they do not have our lot in life. I would suggest instead, if you know that a parent of a child with a disability is having a tough time, that you could listen and be sympathetic, or you could even offer to help in a practical way (like making a supper, or helping with something like their yard work). My friends supported me by including me in their social gatherings, even though having a kid with autism meant I sometimes arrived late or left early (or both), or did not attend at all. They kept inviting me anyway, and that felt like I was being included. When my life was hard, my friends did not forget me. When I was not the best friend to them, they still reached out to me. So, show up for your friends who have kids with disabilities and, I promise you, that will mean a lot more to them than telling them that they are heroes.
LITSP: In your opinion what needs to change in society to give our kids with a disability a better life?
Anne: If we want to make sure that people with disabilities live good lives, we need to invest in the people who support them. As of right now, people who work in the supported living field earn slightly above minimum wage. This is poor remuneration for folks who often do the same work that healthcare workers do: administering medication, advocating healthy food choices, and making sure the individual being supported is safe. Lots of people love this kind of work, but eventually leave for better paying healthcare jobs because they cannot afford to support their own families on such low wages. High staff turnover is hard on people with disabilities, and agencies often struggle to keep all their positions filled. Better wages would fix this issue.
LITSP: What do you think is working that makes a better life for our kids with a disability?
Anne: We have come a long way as a society in how we view disability. We no longer automatically institutionalize people who have disabilities, and we are moving towards a more inclusive society. However, there is still work to be done. There are still many public places that are not accessible for folks with physical disabilities, and while we all agree that people with intellectual disabilities belong in the community, parents face decade long wait lists for their children to move into their own homes. It is important to look at disability through a long lens, and recognize positive changes, but we also need to stay present and keep advocating. We do not have the luxury of selfishness and cynicism, because our loved ones need us to use our privilege to make their lives better. I think we are moving in the right direction, but we have to keep up that momentum.
LITSP: Is there anything else you would like to add?
Anne: Hahaha… this is already so long…. So, nope.
Thank you so very much Anne for sharing your story with all of us.