To get to know Elliott, it might be easier to know how he and his brother came into our lives and helped to make us a family.
Several years ago, I embarked on a professional development project and enrolled in the St. Lawrence Leadership Institute (Class of 2011). This group of professionals met monthly for a year to network, participate in professional development, and brainstorm creative ways to make our region a better place to live. The thought is that by growing leadership in people who already live and work locally, things will change. Well, they sure did for us!
Let me explain - each month, we had a different guest speaker. One month, the Commissioner of Social Services came to frame up the dire straights of the needs of people in our county. We have a perfect storm - we are a border community that spans two provinces on the other side of the St. Lawrence River - Ontario and Quebec. Although we are close to Canada, we are remote to everything else in New York state. We are sparsely populated, there is little industry that hasn't already left the area, joblessness is high, winters are long, alcohol and drugs are popular pastimes, and many people rely on public benefits. This is an educational dichotomy. Most people are largely un- or under-educated, except those who have moved into the area or earned degrees where they now hold jobs at our schools and a handful of local colleges and universities. The Commissioner painted a bleak picture. Welfare fraud. High incarceration rates. Hunger. Crime. Big problems, many of them generational. All of this I knew. I was a public school teacher and in a fairly new relationship with a university instructor. What I did not know, even as a professional working with kids, is that our rural county is a dangerous place for kids to grow up. No worries of gang violence to speak of and that sort of thing - the biggest dangers are the very homes in which they grow up.
Kids are innocent victims of alcoholic and addicted parents, generational pervasive sexual abuse (with the highest rate of incest of any county in any state east of the Mississippi, per capita), neglect, maltreatment, and abuse. Lots of kids. A disproportionately large number of kids for our sparsely populated area. This is the Commissioner's problem. What to do when these kids need help. So, he effectively informed us that his problem was now OUR problem, Because, you see, these kids grow up. Then they do what their parents have taught them and become alcoholics and addicts. Then they too have children - often when they are still children themselves and continue to perpetuate the cycles of generational sexual abuse, neglect, maltreatment, and abuse. That is the long term problem. The short term problem was what to do with these kids now - right now. Where can they go?
What he went on to describe was a fragile network of foster care in our county. Tired, overworked foster parents. Kids who needed to be removed from homes, but no safe homes to move them to. It was his crisis that he kindly made
our crisis. But this is not what we wanted. We wanted to start businesses, we wanted to network, we wanted to run for office and become elected officials. We wanted to make things better for us and use our local resources to do so. After all, we are privileged. It is owed to us. We worked hard and stayed off drugs and alcohol, we got an education. That's why we were in this Leadership Institute. Each of us was there to "get something". But, we quickly learned you don't "get" unless you "give". The Commissioner needed foster parents. Now. He was desperate, the kids were desperate - even the foster parents were desperate - they needed relief, even if for only a weekend or a day where kids in their care could be sent to another approved home for a respite. His eyes scanned the room for interest in foster parenting. We took this awkward moment to check our phones for messages, our shoes for shininess, the clock for the updated time. We looked at and thought of anything we could, aside from actually becoming foster parents.
We
couldn't become foster parents. We weren't even parents. A new relationship, Sara had just bought a house. We had two cats, but no other responsibilities aside from that to tie us down. We enjoyed travel and had been on a cruise to Bermuda and loved it. We wanted more from life. Working on the social problems in our county wasn't on our radar. He begged. Well, maybe not - but he sure politely implored us. He saw no spark of interest in the room as he described the process to become foster parents, so he gave up. But he left us with a question - could we just do it for one or two weekends per month? Did we have that much time to help? Just to care for kids for a weekend or two a month could help a foster parent foster longer - be less burnt out, and could seemingly be part of a bigger solution.
So that night, I returned from the Leadership Institute and Sara greeted me with the usuals - how was the meeting? Anything interesting? Etc. So, I told her about how terrible this area is, all the problems, and that the Commissioner spoke and wanted foster parents and respite providers for foster parents. We agreed that we could NEVER be foster parents. It would cramp our lifestyle. What did
we know about raising kids, especially those with problems? So I told her that being a respite provider could only take up one weekend a month. We could even skip months if we wanted to. I didn't get the "Hell, no!" response I got when I mentioned fostering. But I also knew that it was unlikely I'd get Sara to go for being respite parents. I wasn't even sure myself. So, the TV clicked on - another episode of Mad Men, which I enjoyed with some popcorn.
Over the next week, I started thinking about things - and feeling guilty. These neglected and abused kids WERE our problem too. We complained like everyone else about the problems in our area, but as complainers were really just part of the problem and not part of the solution. What were we doing to make things better in our area? We COULD give up a weekend once a month or so. If that is what can make a difference, we could do it! But would we? I started thinking about all of my half-finished projects, and all those that we had started together. We are ambitious starters, but poor finishers. Starting something new was not what we needed. I threw away the foster/respite parent information meeting sheet that the Commissioner had personally handed to each one of us at the Leadership Institute last night. Then, I remembered it was paper and could be recycled, so I pulled it out of the trash and into the recycle bin it went. But it taunted me over the next few hours, so I fished it out and placed it in the stack of unopened mail and magazines like Food and Wine, cruiseline magazines, and others of haute couture... this is a more appropriate place for ideas and tasks to die. I can always get it back from that stack. The recycle bin was too permanent. Less guilt for me if the idea lived on life support in "the stack".
Over the next few days, Sara and I talked. How were we going to improve life in our community? We were both on board with doing something. But what? We talked more and more about being respite parents for foster children. Sara agreed to go to the interest meeting at the Department of Social Services with me next month. I put it on the calendar and forgot about it until the day before. I had to call in to reserve a spot. Now we were locked in. Neither of us really wanted to go, but what could happen from an interest meeting?
Well, that was three years, two adoptions, and 32 foster children ago. We are now Foster Parent Liaisons for our agency. We run the foster parent support group. We have appeared in two commercials on network TV recruiting others to become foster and adoptive parents, and I have worn a blue rubber bracelet that says, "ASK ME ABOUT FOSTER CARE AND ADOPTION" since the start. We have attended the state conference for foster care and adoption, twice.
THAT is how Elliott and his brother got here and made us into a family. We became respite parents, and our agency called us. Could we just watch two little boys, ages one and two - brothers, for the weekend? Sure! And, we did. And, it was easy and enjoyable. Much like I imagine being a grand parent to be. Change a few diapers, play some games, eat some meals, and give them back on Sunday night. So they called us to do a second weekend, then a third. We really liked those little boys and were looking forward to the call to invite us for a fourth weekend - but it never came. Instead, we got a call - on a Sunday. From a Grade B Supervisor from the DSS. Would we consider having the boys come again - to STAY. In a pre-adoptive placement with us? I was stunned. Sara wasn't available at the time. I had to answer now or they said they'd call the next resource on their list. If I had said no, it was game over. But to give Sara the opportunity to say no, I had to say YES. So I did. And so did Sara. We could "try it". We could always have an out. It wasn't permanent. It could be changed. We weren't throwing our lives in the trash, we were just putting them in the "temporary things stack", like the unopened mail and pretentious magazines.
Well, we fell in love with Elliott and Pierson. Madly, deeply, truly in love. They were ours, and we were theirs. A drop in the bucket in terms of the regional problems we sought to correct, but for these two boys - we would make a difference. A blind leap into a world that we knew nothing about. We often, even now, ask ourselves in private moments of doubt what business we have doing this. Isn't it self-righteous to think that WE are THE ones to do this for these two little ones? We had no track record of being parents. This opportunity came long before all of the other foster kids did. But what we did know is that we could try our best and that even if our best wasn't good enough, it would be better than the future that had awaited the boys before being removed from their birth home.
That is where Elliott and his brother came from and how we became a family.
What we did not know at the time is that Elliott and Pierson both had significant special needs. Some genetic, and some the result of what they endured both before coming into what would become years of foster care. They lived in five foster homes before coming to us, one of them a pre-adoptive long term placement that didn't work out.
Elliott is anything but a diagnosis. Same with his brother. They are people and they are wonderful. But diagnosis is the pathway to services and supports. Luckily, we are at the end of the process of discovering their diagnoses and needs. Pierson is enrolled in a program called, "Bridges to Health" (B2H) - a Medicaid waiver services program originally designed to help pre-adoptive foster children from experiencing failed adoptions due to the struggles they present to adoptive parents. By providing a higher level of care and services (until age 21) that meet kids where they are, permanency can be lifelong. Elliott just received an eligibility determination for a Medicaid waiver services program called OPWDD (Office of Persons With Developmental Disabilities). We have less hair - more of it grey, more wrinkles, but we can breathe again. We won't have to raise these boys without special help for their special needs. We aren't alone anymore - and that my friends, is a very very good thing.
So this blog is about us, but specifically it's about one boy, one dog, and new hope for his future. Elliott has autism. That's the first time I have ever typed those words. Elliott also has Reactive Attachment Disorder (RAD, dis-inhibited), ADHD, and a rare genetic disorder that has yet to be named. There are about 500 persons thought to have 22q13.31 duplication where a chunk of the 22nd chromosome that normally has copies of genes from the mother and father (one set from each), has three copies. One of the three is damaged and bad, the other two are ok. Much like roulette, the parts of his body choose two of the three copies to use. Some parts were lucky and used the two good copies. Some, not so lucky as they chose one good and one bad copy. In another month or so, we will have his brain MRI results, kidney scans and other tests back to know what has affected what. In late summer Elliott turns 5 and will be old enough to begin medication for ADHD. He and his brother will have completed about two years of therapy for RAD. Many problems from those won't be lifelong.
Elliott will always have autism and be a 22q kid and in many ways they will always affect him and the way in which he interacts with and experiences his world.
Elliott is lucky. He is smart, he is verbal, and he is perhaps the sweetest kid you'll ever meet - much like a Downs Syndrome child. To the casual observer, most folks would think he was just like anyone else. But Elliott's skills are splintered in almost every way. He wanders and bolts away. He has "melt-downs", he talks about himself in the third person and has echolalia and other characteristics of autism. He has trouble making eye contact. He has many quirks that we have come to accept as being part of the Elliott that we love.
After his being diagnosed with autism, we read as much as we could. No one wants to stand by and just "let their kid BE autistic". This baby, is life A.G. (After Google)! Everything has a cure. There must be a pill. Except for autism. Not that people don't try - they do. There are special autism diets, nutritional supplements, additives to avoid, special therapy programs to do. And then the shots. He got several of his four year old shots a few weeks
after being diagnosed with autism. We are sure that these are the cause. After all, a diagnosis before immunizations would suggest a strong correlation. Yes, we do mock this convenient rumored cause of autism. And then there are those that would say autism is a choice. It's bad parenting - don't "let him" act like that. We get looks and stares everywhere from the grocery store to the men's room. There is no off switch for his autism. It is the filter through which he experiences life.
If you have endured reading to this point, then at least join me in reflecting on your own life and thank all the goodness in the world that you are not an autistic child and that you also have your mental health. I celebrate this in my life and do not take it for granted. These boys have taught me otherwise. Having said that, you may be autistic yourself. I understand that as a spectrum disorder, if you have met a person with autism, you have only ever met ONE person with autism. We are all different. There have been times in my life where I feel I may be autistic too. But to be a child with autism, where you are trying to make sense out of a confusing world as it is, but through a brain that is wired with a completely different operating system must be pretty hell like. All the others who don't share your operating system have trouble understanding you and why you do what you do. You know you are different in a world that drives us to conform and blend in. This is where Elliott is - compounded by the psychological effects of trauma from early neglect, time in the foster care system and other factors. I suppose we will someday celebrate his diversity as a successful person who just happens to have autism. But that's not where we are.
We are mad. He shouldn't have had to face all of this. For years, people who could have helped him didn't. They normalized him. He was spit-shined and sent out the foster care door. He's cured - just adopt him. It was all just us. All kids have "that quirk", and "this one". We have ended that cycle. So now, what to do about it? How do we meet Elliott where he is and support his current needs?
We don't support the snake oil autism remedies and therapies that are out there. But strategies that are research proven and have strong anecdotal evidence catch our attention.
An autism service dog. More and more research and anecdotal evidence supports the use of a service dog to help children with autism. We are cat people. A family pet dog isn't what we signed up for. Then again, we never saw a future as parents of two boys with special needs. So take the old rules and throw them out. It's a different time now. One that requires innovation and out of the box thinking. We believe in karma or at least the order and energy of the world. If something is meant to be, it will be. I talked with a few of our friends about this idea - a service dog for autism, it started to catch on. But, the cost was anywhere between $12,000 and $30,000. Cost prohibitive for us. There are foundations that provide autism service dogs, but the wait time can be anywhere from 2 to 3 years or more. Then, I read that a person could train their own service dog. It is a long and difficult process, but COULD be done.
I read up on breeds of dogs that make the best service dogs. It had to be a big one. Elliott squishes the cats with "hugs" as they scratch and yowl to try to escape his affection. It had to be a tolerant one, and a smart and loyal one. We agreed that it needed to be a low-shedder so that we didn't have dust bunny balls of dog hair rolling around the house. All signs pointed to the Golden Doodle breed. Low shedding, smart, loyal, big. A cross between a large standard poodle and a golden retriever. Perfect - not. Most breeders were asking between $800 and $1500. Still too much money, especially when you consider that's just the cost of the dog, not to mention training and other expenses.
Then I got message from a friend. She knew someone who had a connection to someone who raised golden doodle puppies and might, just might give us a break off the $800 cost. Turns out that breeder has a niece with autism and just donated a puppy to her and it's made a world of difference for her already. So the breeder was sympathetic to our cause and need and essentially donated the puppy to us for a fee that covered vet, food, and other expenses.
Karma was working, and the dog fell into our laps. This was the beginning of something very exciting and a new chapter in Elliott's life! So, maybe - just maybe, with One Boy and One Dog, we have One Hope - that Elliott's Service Dog will make his life richer and serve as a passport to understanding the world around him as the world makes strides to understand kids like Elliott.
