I sat here for some time trying to figure out what to call this entry but I did promise all B.S. aside so it is fitting I suppose.
It has been three months of turmoil in our family. It was sudden, harsh, unpleasant, maddening and simply sad. But, life is not supposed to be easy all the time and we had a very nice long stretch of easy and since we are not more special or privileged than any other family so we took this as just the shit we would have to bear for a while. My 11 year old son, Logan, has no problem with me sharing our story but he wants privacy when coming to the details and so I shall respect his wishes.
Adam is autistic and in puberty. He understands everything that is said to him, can read and type and write and is a Special Olympics division 1 and 2 competitor in speed skating. He is also a pretty good artist and is a very capable and independent young person in spite of his autism. I see teens in puberty and I know it is a hard time for them. I also cannot compare it to my own puberty as this is a different generation exposed to so much more with a lot more avenues that create their own pressures. This is a social media era and nothing is private and there is a great emphasis on fitting in, in a way we never had to deal with in our youth. So I’m thinking having autism, being high functioning enough to sense certain vibes around you and going through puberty is even that much more difficult.
Adam’s frustration came in the form of nasty language that he’s discovered on you tube. It’s one thing to hear swearing in school or wherever but what he was saying he had stumbled upon on line and it was clear he rehearsed it because we could tell that when we did not react the way others did on whatever it was he watched he didn’t really know what to do. Did we censor his ipad? Yes…as much as one could. Was he able to find his way around our security? Of course! He is a 14 year old living in this era so we had to resort to good old talking to him and explaining to him what were good and bad choices. So the swearing was one thing…,the aggression was another and with autism Adam has trouble knowing when he has gone too far and what consequences really are. Let’s say my husband Tom has become really good at fixing drywall. Adam literally would put a hole in a wall when he was angry. So…he lost privileges in his room. We had to discipline him and so by the new year, he had just his bed in his room, no ipad, no electronics, nothing. There was no way we could allow him the privilege of these things when all he wanted to do was throw them.
During the time between Christmas Eve and now, Adam had been hospitalized for a while, just so that he would not be in our home and angry. Of course he was perfectly well behaved while there but he was still put on two different medications that made no sense to me and I lobbied for him to have an EEG to check for seizures that I suspected he might be having. Basically, even though I was frustrated by what Adam was doing, he is still my son and I refused to have his behaviors medicated especially from the outside in. Why treat something that way? Why not rule out what could be going on internally before treating externally? As a parent it is important to stress this when anyone wants to treat your child as doctors who are not versed in autism tend to see all little tics and habits as part of the condition. My kid is a trickster and can use his “autistic stims” to make people go away. Adam was so well behaved in the hospital, no one believed he was aggressive until I showed them recordings of him acting out.
Long story short, once he was discharged shortly after his birthday on January 2nd, we were walking on eggshells in our own home with Adam. I have a lot of resources and over the years whether Adam needed them or not, I have kept in touch with these people and organizations and included Adam in all their group activities. We started behavior therapy and got a lot of out of home respite set up for Adam. He is a very active person so the staff was able to take him to his activities and also have him do other outings with young people just like him and it helped quite a bit. It was however a band aid solution as Adam came home from school, had dinner and was out until 10 pm pretty much every day. But as all programs face, there was only enough funding for that to carry on until the end of March and though Adam was behaving somewhat better we knew when the respite stopped the behaviors in the home would surface again. So, I started advocating again. I had called specific agencies and encouraged them to help me find a solution to dealing with Adam at this time and I decided that it was time to pull out what was in my heart of hearts and request that Adam live somewhere else without us giving up custody of him. Respite in the form of a foster living kind of situation. Since he is good to everyone else and the anger is directed towards Tom and me because we are his parents and the acting out pretty much only happens at home…then he can’t be in our home. There are three other people living here and there is an 11 year old to raise, there is a business to run and bills to pay and coming home has always been wonderful until now. Knowing that I was raising a very independent autistic young man, I was aware that he would certainly be able to live out of our home with assistance, whether if that was with other young men like himself in a group home, or with a trained couple….I was never arrogant to decide that he should live with us for the rest of his life. I always only ever wanted to put two happy and independent young people on the planet and that has never changed. I just didn’t think Adam would “want outta here” as he said over and over again, at 14.
We were matched with a lovely couple who are trained and experienced in this sort of thing who were ready to care for someone like Adam. They had certainly done this before, had raised three successful boys of their own and they are very similar to us with respect to morals and values. We will see Adam regularly but for now he is there most of the time so that he can settle in. He loves it there. Where we live in the city, they are in the country. We are into sports and they are into farming and automobiles. We are tall and lanky they are shorter and stocky…different but in the ways that count for his well being, the same. He has visited us and had mostly good moments but there were a couple incidents that reminded us why we chose to do what we did. It is our hope with all the behavior therapy, speech therapy and occupational therapy we have in place that is more specific for a pubescent young man that he will sort through his feelings. It is our hope that he will miss us and enjoy coming home to visit and that we can recapture the relationship we had before all this started…or at least one that one can expect to have not with a child but with a young man. We hope to continue to include him on family vacations and special occasions and and that we can all support him so that he will continue to be successful in his beloved speed skating and art and in life.
Adam is on a low dose anti seizure med now with magnesium bisiglycerate and b6 DMG and zinc supplements along with his diet. He is starting conversations now and is talking more than ever. We are all working on breaking him of a physical stim he has decided to hang on to so that he can use it to avoid responsibilities…a side effect of one of the meds he was on just a month ago and his enjoying his down time in the country now that the skating season is over. We came back from a work conference last Thursday and that evening packed his clothes in a suitcase and sent him to his surrogate family. I packed his clothes and things systematically without shedding a tear and the three of us dropped him off. We were comforted when we saw where they lived and were able to chat with them in their own environment. They had looked after him while we were away as a sort of trial run and Adam did quite well during those 4 days. We drove away quietly, each of the three of us thinking our own thoughts but knowing this was a necessary step in keeping our family together during Adam’s puberty. The alternative was keeping him at home and having him explode angrily and being destructive and tearing us all apart until we would have no choice to call child services to permanently take him away. That would ruin our Adam and all that he has worked so hard to achieve and none of us want that.
So here we are …at home…less stressed but still a bit sad. I am not sure we will ever really get used to Adam not being here everyday. As a mother, it tears you apart when you put your child’s clothes into a suitcase and sending him to another woman’s home. It tears you apart knowing that another woman is going to raise your child on a daily basis for the next while and that he actually prefers going to her home than to yours. But somehow you don’t cry. You hold it together in yoga, in therapy and at home and at work …you hold it together until your mother tells you on the phone that you are brave and only the bravest of women know that you can love your child and your family enough to make the choice to send Adam away given our circumstances. My mother did not pretend to understand how I felt. She did not judge or give advice…she gave support. She told me that as mothers we are not supposed to raise our children alone and like good old Hilary said it does “take a village”. Adam’s surrogate family is now part of our family. He now has more support; Logan has more of our attention at home and Tom and I have peace and we can begin to repair the things that we let slide because of our crisis with Adam over these past three months. We don’t feel good that Adam is not in his bed in our home at night but we feel better about the way things are now. We miss him everyday and cherish when he is home for a visit. We love him dearly and we do worry about him but we are becoming more at peace knowing he is in good hands and all that we have put in place will help him through this time. He has a lot to learn and we have made this possible for him. Love is love I suppose whether it’s kind or tough.
Before I end this, a word to parents of younger autistic kids – Your children have their own tough-to -handle moments now. They can still be picked up, moved to another room, reprimanded etc., and though you are exhausted each and every day there is a point of control. You like us will raise the money to try anything that will help them with the effects of their autism and you will have things that will work and those that will not. Then your child, before you know it will be 10, 11 then in their teens. They will grow, develop and they will hit puberty. During this time, they have control. To disagree with me is to be in denial. Access your services …all of them…learn who to call, when to call and don’t judge a service on face value. Child Services is not about taking your child away. In fact, all services work together to do the best they can for your child and your family. I am still Adam’s mother, Tom is still his father and Logan is still his brother. There will still be family gatherings, vacations and outings but if your living situation has to change to keep your family whole, please be open to change. You can love your child no matter where he is. Tom and I have been and still are fantastic parents – the best ones Adam could ever have and we did our best. Look at all he can do because of our willingness to stop at nothing. But know there is a time when you have to slow down and a time when you have to stop. We know now it’s time to slow down and in a few years….it will be time to stop as Adam will become his own man and will not need us to help him in the ways he once needed us to. Please don’t let guilt or ego cloud your judgement. Recognize there are other people involved in your family and it is not only about your autistic child. Setting up your home like autism central is not healthy. We never did and for that I am so glad. Our promise was to meet Adam half way if he could try to do the same and he did – hence his independence and ability today. Please get your child’s name on a list for semi independent or group living now….space is by attrition and you don’t want to end up with a 30 year old child who never learned to live independently of you or has frustration because he is stuck with you when you are 80. You will die and leave this child behind one day so please don’t be close minded. Use your services …they are there for you and your familyand they will help your child reach his full potential. Now…my son Adam is texting me so I gotta go.
2 thoughts on “Tough Love I suppose”
Wow– You and Tom are the greatest parent Adam, and Logan, could have gotten. You put Adam’s need before yours, and he voiced his need to “be outta here” and you listened. My Mommy-heart is sooooo sad that you guys have to be apart, I truly believe this is only going to make your family stronger in the long run. I wish I could give you a big hug right now.
Very proud of you.