The single father and his 19 year old son on the spectrum

Autism parenting is some of the most helpless feelings that a parent will ever encounter as many parents, especially ones whose children pre-dated the most up-to-date in education, care, and intervention, struggle to help their children become less and less lost in the rest of the world.  With numbers of autism diagnoses on the rise, many times adults on the spectrum are left behind as the focus is on children.  There is still so much need for support, understanding, and solutions for those families that are trying to see what kind of future that their children have on the spectrum long after the see other children seeming to have successes where their child has not.

In this article, Jimmy is a single father to a nineteen year old son that is considered extremely low functioning autistic and he is realizing that his life will likely be spent in perpetual care of his child.  As explained above, there were so many limited resources and knowledge about autism when they began their journey, that his son Kyle has never been able to find his words.  Special Education programs, especially, are often woefully underfunded and children are often viewed as disposable because they are assumed to not be able to go any further; expectations are very low.  In Kyle’s case his autism was exacerbated by severe seizures that he had from the time he was a baby and although his father is uncertain if these seizures were the cause or just made the autism worse he doesn’t really know.  

Autistic children and people diagnosed before this last decade are often being left behind in this world as the focus for intervention is often placed on children in the birth-to-three category.  Recent advances in intervention are helping many of these children to surpass what was believed as possible.  Kyle is a nineteen year old autistic young man; his father Jimmy is a single parent and his primary care-giver.  As with many autism families, employment outside of the home is a challenge and even more so when the parent is on his or her own.  The journey that these parents whose children seem to be left behind, is often one that leaves them feeling bitter, helpless, and extremely alone.  During a series of conversations with this single dad, I began to sense a lot of that as he often relies on the part-time aide of outside caregivers in his home and is a way of allowing him a break so that he can do the things that he needs to do during his day.  Many of these ‘low’ end spectrum children need constant and perpetual supervision and can be very draining to a point that is beyond the comprehension of others that cannot fathom or understand the rigors of autism parenting.  It is more emotionally difficult than it is physical.

During a conversation via Skype with Jimmy on one occasion he turned the camera onto his son who was sitting on the other end of the couch with a remote, a box with some wire coming out of it.  His father marveled over what it is that fascinated his child with these items as they were nothing special or seeming interest to anyone else except Kyle.  If a person that does not have a child on the spectrum were to watch this activity, likely notes of confusion, judgment, or just discomfort would play out on their faces, but most parents have discovered that it doesn’t have to make sense to the rest of the world as long as it does our children.  It is always interesting to me how ignorance leaves people incapable of reaching out for edification on a subject, but it is easier to take what they may not be comfortable with and ignoring it as much as possible.  This is how I see many of our autism children over the age of 13 years old:  forgotten, ignored, not the focus of most of the intervention and research.  Don’t get me wrong, I find it very comforting that so many parents find relief for their children these days and that the intervention (although far from adequate still, the world still doesn’t understand just how much autistic people can do if given the opportunity) is so much better as what is known about autism becomes more understood.

Kyle is just one more child that has entered adulthood that has been looked over, ignored, and basically cast aside.  His parents were not given enough information as to what they could do for Kyle on their own, because there wasn’t enough information to be given.  Certainly information about this subject was more than the decade before, but there just wasn’t enough advocacy, understanding, and awareness when Kyle was a child for him to really be given many opportunities.  In fact, his most of his childhood his parents just felt that he was delayed, they didn’t even know the word autism until years after their journey and it had been briefly mentioned in an IEP. “Up until he began to have seizures at the age of two months old, he was developing as any other infant would. He'd follow things with his eyes and giggle at things. When the seizures hit is when he began a quick and steady regression. I don't know that we really recognized it as autism at the time and we hoped he would get better. I don't recall the word autistic ever being brought up the first few years as much as developmentally delayed.”  It is hard for people with children that are not on the spectrum or that have children with no issues in their social development to really grasp how dire this is.

For Jimmy, in our conversations, seems to understand just how forgotten his son has become.  He relayed one story about a single educator that knew a little sign language and had been working with Kyle on it and he was even using some of it to communicate, “I do wish that they would have continued with the ASL in school, who knows where he'd be now with his communication skills…He always had a difficult time in school mostly because if behavior issues which undoubtedly arose from various frustrations with the inability to communicate for one thing.”   However, as with many schools that do not see the potential of a child with special needs, as soon as she left the school no one really bothered to follow up or continue this education.  He seemed to lose what little he had learned at that point.  That has been one of the vast public education system’s issues is their inability to see potential in children with special needs and the need to invest in them.  Things have changed somewhat, but it is still often the case.  A child on the autism spectrum is often limited by the limitations of others, in this case the school.  Like many parents, the Faris' were relying on these systems to be educated on proper methods to teach out children and unfortunately they haven't been or aren't.  One of his greatest and best dreams for his son at this point would be to have some way to communicate with the rest of the world, but at this point, “I would hope that one day he'd be able to be able to communicate better his thoughts and feelings…My dream would be that he be able to be independent one day, though I know he never will. Also that at the very least, that he can be potty trained.”

Autism is not just about the person with it; it affects the entire family; people in the world do not often see just what it is that families go through daily.  In the US, divorce seems high, but in our Special Needs community there is about a 78% marriage mortality rate of those with a child of unspecified special need; for autism specific it is about 92%.  It is not just about marriages, but the whole family as parents begin to have guilt about the time their child with such great needs takes from the other children.    I think what Jimmy shared shows what many marriages seem to face, “I'd have to say that the first five years of our marriage were probably the best ones, the ones before Kyle came along and changed things. I found that once the seizures started that Kyle then took the majority of our time. He took time away from my other children as well as our marriage. Before he came along I spent a lot more time with my older son doing things like camping and such. One of my biggest regrets is how much time Kyle took away from Tanner and also my daughter when she came along. Time I'll never get back. It hurts to think about, like not being able to say go on scouting camp outs with Tanner because there was no one else to take care of Kyle. He had various caregivers over the years but he's always been such a challenging child that I've really never been able to go very far or do much. His mother was never much help as she was always working. I think that work has always been her form of escaping; escaping from Kyle and his autism.”

On the outside, in the rest of world, people do not understand the struggles and often there is judgment passed based specifically on ignorance of the situation as to the parenting decisions that people with children on the spectrum need to make.  But imagine this…imagine watching your child who seems so detached and lost from the world continuing to spiral further and further away with each passing seizure with each passing day he becomes a little more lost from you. What would you do?  How would you try to help him?  Conventional medications were not helping Kyle and the Faris’ felt like something needed to change, especially after an outburst at the neurologist’s office left them without care for Kyle.  It is sad, but the truth is even the educated people who should know better and understand the situation best can still ignorantly refuse to treat a person’s needs based on their own stupidity.  This is whenJimmy and his then wife   decided it was time to try something new and different...marijuana.  

Below is a video from their local news station:

http://youtu.be/HxMNb2S8Er4

I can almost hear the potential gasps and the outrage of this family seeking such a controversial topic of the day, but what is different about marijuana than the other drugs that have been coursing through Kyle’s veins to curb his seizures and that I might add…weren’t really doing the job.  I cannot say that if I were in their position that I would not have reached out for another solution and another way to help my child.  A funny thing happened though, the marijuana helped to stop the seizures and it helped him in other ways as well, “Once we got his seizures under control with his medical marijuana, he did a lot better behavior wise and also improved in his ability to receive and understand instructions.”  This help didn’t come in time, though.  The Faris’ marriage ended through a series of events likely exacerbated by the years of stressful living with a child with severe autism.  Lack of support and lack of enough alone time together created a recipe for failure and ultimately divorce. 

It has been difficult on Jimmy as he has always been the sole care provider for their son and the two of them are often on their own together with only intermittent weekend help for him to allow him to have some time away from.  It is difficult as many parents with children on the spectrum are shut away from the world and often left isolated due to their circumstances and lack of community and family support.  He has found solace in trying to focus on him through exercise and other supportive meetings outside of the home when he is able to go.  It is a lonely job that he has and he realizes it may continue to be one for a long time to come.  Statistically, single parents of children on the spectrum will either jump from relationship to relationship as they try to find a person that will meet their family needs or live on their own trying to function within the constructs of society while still being available to their child, “[The hardest part about being a parent to Kyle] I would say is the communication barrier and not always knowing why he has some of the behaviors that he does, like when he acts out by kicking and screaming and throwing whatever he can get his hands on across the room. Also, all the time that he demands, you can't just leave him alone and expect him to take care of himself. It's a constant job; you have to be with him at all times. The only time I get a break is when he's at school or has a caregiver or is sleeping, and even with all that, you never know. I get calls from school when he's having issues, I help the caregiver if need arises due to behavior, and he wakes up during the night, usually more than once and needs attention…” 

These are things that Jimmy does willingly because he loves his son, but the truth is there is a reason that people who work with children and people on the spectrum have such high burnout rates, or that marriages dissolve, or that siblings of these family members either end up with unusual problems or seem to have such a high rate of success:  this is not a job for the faint of heart.  Kyle's needs haven't been all negatives, he enjoys taking car rides, singing, and bike rides in his special trailer which his father enjoys doing with him.  It is so much more than that.  It is so much more than that.  It is a life.  It is Jimmy’s life and likely one he will have to undertake for the rest of his.   Now that is all the product of love and willingness to stay the course for his son

Final part 4: You know your child better than anyone else...

The Final Destination:  Homeschool

This was Aiden’s first year in the main inclusive special education room and because of the limited resources both of my sons now shared a teacher and a space (at three years age difference).  Aiden has always been a little more rambunctious than Seamus was and that seemed to frustrate the women in the room often because of his high energy level.  I had made requests on his IEP’s many times that he should be given his own para-educator because of his particular needs; it was always quashed because ‘we are just too small of a school to afford it…at least his basic needs are being met.’  I almost felt sorry for the teacher because she seemed like she was quite incapable of getting it all together and that she was often overwhelmed beyond capacity more than she was not.   This would also be his last year to participate in that classroom; I had already been making the preparations and decisions that likely I would have to pull them from school.

Aside from the other obvious issues in the classroom, there was the lack of speech that the boys were using and as I have often mentioned their specialists were perplexed and concerned that the boys were not talking more.  When it was brought to the school's attention I was told frequently, “Oh, your children will never speak, they are not capable…You have unrealistic expectations.”  I was completely mind-boggled that the speech pathologist could not see past her own pride and then there was the lack of training for the para-educators who often were kindly grandmothers with almost no ability to understand that a kind heart does not always make for an appropriate model to children that still need structure and accountability.  The list was enormous as to the failings that transpired while my sons attended there and I look back and marvel at how the boys even managed to show any signs of improvement in their education.  The truth is there was more regression than progression.  Then the fateful day that would forever change the course of our lives happened; it is the day that I knew the boys would be homeschool children and I would be their teacher.

I had, from time-to-time, worked outside of the home to try to catch up on bills throughout the course of the marriage for various reasons.  At this particular time, I was working an overnight position when I was awoken one afternoon by a call from the teacher.  She had an oddly calm tone in her voice as she was letting me know that Aiden had split his head open and that maybe I should come get him.  It was a call that many parents often dread and fear; it wasn’t until after I had gotten to the school the news just went from bad to worse.  I am certain that my face went from white to ashen then to hot red anger as I saw the damage to my baby’s head.  It was split from the front to the back of it just on the side of only a few inches above his year.  Although it wasn’t bleeding at the moment, the nature of his wound told the whole story.  I turned on the woman with all of the ferociousness of a crazed mountain lioness protecting her cub, “WHAT HAPPENED TO MY CHILD?  How did this happen?”  The octaves to which my voice raised probably couldn’t be measured by practical methods and I saw her eyes avoiding mine as she tried to explain herself.

After some awkward stuttering, she finally told me how she was short-handed that day; that Aiden just ran around too much and was just too hard to be taken care of, so she restrained him in a Rifton chair with an activity for him to do on his own.  For those of you who do not know what a Rifton chair is…it is a chair designed to help children who cannot sit on their own at their desks to do work.  It was not actually designed or meant as a restraint, but an aide for those children that perhaps did not have the physical capacity to sit on their own. 

She went onto admit that she had become busy with other students and had sort of forgotten about him; she wasn’t really sure exactly how long he had been left there.  I stood there speechless as she was admitting to me that she had basically endangered my child’s well-being for the sake of peace and quiet.  Upon remarking this sentiment to her, her response was, “Well, if Aiden would just learn to sit still I wouldn’t have had to keep him in the chair.  I mean we always put him in it so we can work with other students, but the harness my para made wasn’t where I thought it was and she wasn’t here today to find it.”  This was the first time I had been informed that they were doing this to my son.  Restraining a child without parental consent and outside of the original edifices of their IEP was illegal.  This woman was breaking the law and didn’t even seem to care and worst of all she had the gall to blame the child for her own mistake.  I felt sick.  My entire body felt sick at the very sight of this nightmare that I had been living since my oldest son had started in this same room just three years before.

If all of this wasn’t bad enough, she then proceeded to admit that instead of calling me or an ambulance right away she tried to get the bleeding to stop in the classroom (which she actually never called the school nurse either, she called me directly from her room).  Her and a para decided to hold him down (imagine being five, injured, and nonverbal then forcibly held down for hours) to stop the bleeding; she said it almost with pride that they had 'solved' the problem.  I was mortified.

I took my son immediately to the doctors’ office to have him examined, where she took in my story with the same horror and disbelief that I had when I heard the entire incident.  Although the injury was bad enough to warrant stitches, she didn’t want him to have to go through anymore trauma that day and instructed he not be sent back to school for fear of it breaking open.  She then tied a few of his hair together and instructed that if it did open again to bring him back in to see her or the emergency room.  I was to watch for a concussion and keep her posted.  Then she did something amazing and I love her to this day for it…she not only listed in the medical record where and how the injury occurred, but she wrote a letter to the school on our behalf (I still have a copy) stating her own anger at the incident and that she had made record of it for future reference.  It was small vindication and although I have proof of negligence, in the end it didn't really matter. 

The next day I spent all day calling every agency I could think of as I found out that the woman barely got off with a warning for doing something that would ultimately have a child taken from his or her parents.  The sheriff’s office, child protective service, and all of the other branches of the state services told me was the same:  the school board is your only option.  The sheriff’s office actually called it an ‘accident’ while if it had been me leaving my son unattended it would have been called neglect.  Tenure was meant to protect teachers needing security, in this case tenure allowed a woman that should have long before left her job the ability to remain in it.  She continued to hold her position for three years after my sons were pulled from the school.

I knew at that moment that with only two months left in the school year that I would be removing them from that awful place.  They had done their powerful best to keep me from allowing the boys to attend another school district (they have to sign a waiver allowing any child to attend another school and I couldn’t prove that they were not just meeting the boys ‘basic’ educational needs).  On the day that I left with the knowledge they wouldn’t return the following school year, the same smug Psychologist took me aside and said, “I never liked you.  I am glad you won’t be coming back; all you did was make my life miserable.  I never understood why you couldn’t be like other parents and shut up and let us do our jobs.”

The principal told me, “You are just damaging your sons by pulling them from school.  I think all homeschool parents don’t understand just how much college they need in order to teach their children and your sons will never respond to you as they do to teachers.  This will backfire on you.”

What I love most about autism is that it is incongruent and that there are times when I am teaching my sons and I am just not sure that they really understand all of that I am showing them…but one thing that makes it all worthwhile is that they seem to understand that timing is everything.  About six or seven months after I pulled them from school (mind you one of the arguments had been my sons weren’t capable of speech) I was letting the boys each take a lap with me at Relay for Life in my town.  Seamus was with me when their former principal approached us and said, “Hello Seamus!  How are you?  It’s so good to see you!”  She said it to him but was looking right at me with a sort of smug look on her face.

Suddenly Seamus replies, “I’m good. ‘ow are you?”  The look on her face as she looked back and forth between the two of us was just the sweetest feeling ever…not because I had managed to use the speech program at home that they refused to use in school and helped both boys talk in about six months time, but because my son proven them wrong all on his own.  There is no better justice than watching your child vindicate himself and show people that there is no cap on potential; there is no limit on what anyone can do.  I was so proud that I could burst.  He didn’t say more than a word here or there again for a few weeks’ time, but I will say this…timing is indeed everything.  

I knew that my sons were capable of more and I knew that they weren't getting what they needed; however, for a person that once worked for public schools and desired to be a special education teacher...public education failed my sons in the worst way possible.  They were never a priority; they were never going to be given what they needed.  I still beat myself up for not pulling them sooner when I first realized that they would never have the resources that they needed to exceed.  Next series up will talk about homeschooling for autistic children with limited speech)