My fourteen-year-old son Tate
has autism and my eleven-year-old adopted daughter has Fetal Alcohol Syndrome
(FAS). I blog about them, the things we have done that have helped and the
things that have not helped: the lessons we have learned, their siblings,
classmates, teachers, IEPs, and many other things that have come with the
experience of raising these special children. I do this for many reasons. I
hope to help those who do not live with autism or FAS to understand a little
bit better what these disabilities look like. I also try to help those who are
coming after us so they can draw from some of our experiences, perhaps making
their own lives just a little bit easier.
I do not claim to know
everything and I often remind people that I am just a mom. I am not a doctor,
an educator, or a therapist, and I am not formally trained to help anyone. I
just know what autism looks like in my son and what FAS has done to my little
girl. I have years of experience to share. The ideas and methods we used are not
something I believe must be followed to achieve success. I know sometimes there
is more than one solution to each problem we encounter and I know the
individuality of a child and their family should be considered. There. This
paragraph is my disclaimer. So please no messages about how I’m doing it all
wrong or that I'm judging you for doing it differently...
Tate, around the time of his diagnosis |
I have often heard, “Every
behavior has a purpose.” ABA therapy revolves around this and I do not
disagree. ABA also says that the stereotypic behavior serves a purpose of some
kind but that behavior can be replaced with one that will serve the same
purpose. In other words, "If you eliminate one stim then it will be replaced with another." I found this to be true. Tate still stims but his stims are subtle and they do not keep himself
or those around him from learning or engaging in activities or with other
people. It took a lot of hard work to eliminate some of Tate’s former
stereotypic behaviors but I am not sorry we did it. In my opinion the hand flapping
was not in Tate’s best interest.
Anytime I write about this I
get objections from a few parents who do not understand why I stopped Tate from
hand flapping when he was a preschooler. I hear: “It’s not hurting anyone.” And
then there is: “I would never ask my child to stop doing something that was calming/comforting/pleasurable/satisfying
to him/her.” Really? Are those statements even valid? What if your child were
pulling his sibling’s hair? It is a behavior that he finds satisfying, right? Of
course you would stop him from doing that because it hurts another person.
Would you do your best to stop your child from smearing his feces? You would?
Okay. You would want to stop him from doing something that was unhealthy. How
about head banging? If he were banging his head on the floor over and over then
would you stop him from doing that? You’d block him. You’d put a helmet on him.
Is it because it is harmful to him? So there are SOME things you would try to
redirect but not others. Hand flapping. Hand flapping is acceptable to you
because it is not hurting your child. It is not filthy. It is not hurting a
sibling. Perhaps your child can learn while he is hand flapping. Mine could not. When Tate hand flapped it did hurt him. It consumed him. It kept him
from learning. Our goal was to make every minute of his day a learning
experience. He could hand flap, fan the pages of a book, wave his cloth diaper
in front of his face, stare at his reflection, or run “without purpose” for
thirty minutes to an hour at a time. The more Tate stimmed, the more he wanted
to stim. The stereotypic behavior itself was reinforcing. It was a habit. The
more Tate engaged in stereotypic behaviors the less opportunities he had to
engage with his peers. His peers saw the hand flapping and some of the
behaviors as odd and they approached Tate less because of it. The stereotypic
behaviors were sabotaging so much of Tate’s social and academic education. As difficult as it was to get four and five year olds to look past the stereotypic behaviors, I imagined it would be infinitely harder to get peers in Junior High to be understanding of it. Perhaps Tate would have just "outgrown" the behaviors like hand flapping. Some children do. But some do not. I was not willing to risk it and have to look back and wish I had tried to eliminate them. We replaced the more obvious stims with much less obvious ones that still serve the purpose he needed them for.
Sydney, age one |
Sydney came to us
with stims too and I worked hard to eliminate those. Being neglected for the
first ten and a half months of her life she spent much of her day rocking. The
rocking had a purpose. Children who are neglected find ways to stimulate, and
occupy themselves, and comfort themselves. After we got Sydney home and I knew
she was provided with all the things she needed to thrive I worked constantly
at gently stopping her when she rocked. It did not take very many weeks to stop
the rocking. I am so thankful I did what I did as I have seen another adopted
child older than Sydney who still rocks. The advice that child’s parents got
was to allow the rocking because it fulfilled a need. I feel the need could
have been fulfilled in other ways. I could be wrong. I'm not an expert. But in
my experience with my children: the longer a behavior goes on the harder it
will be to stop.
Some might think I
was mean or intolerant. Some might call what I did "tough love." Once
a mom who was upset with me for a blog post I wrote implied she loved her child
more than I loved mine because she embraced his stimming. She said,
"I love my child enough to let him stim." I wish I had said, "I
loved mine enough to help him to stop." but I am never good at witty
comebacks. There is no doubt in my mind that we all love our children immensely
regardless of our position on this subject and others. It does not mean you are
a better parent if you let your child hand flap or rock. It does not mean I am
a better parent if I stop mine from doing it. We all want what is
best for our children. I drew the line before some others would I am sure. Some
might draw it before head banging or hair pulling but I drew it before hand
flapping and rocking. And I do not regret it. I cannot go back and do it
another way to try and see which way worked best. I am glad I do not have to.
It was hard work. It would have been much easier in the short term to let Tate
spend his days tossing his cloth diaper around and hand flapping. It would have
been so much easier in the short term to let Sydney sit in her playpen and
rock. But would I have kids as high functioning as I have now? What do you
think?
There
are a few things I have changed my opinion about and wish I had done
differently. I will have a post up about that soon. I had originally thought I
would talk about those things in this post too but I am told a post more than
1000 words is too long. So stay tuned…
As you have seen my comments before which I don't know why I haven't started blogging myself, however I agree with what you have done, both as a mom and as a teacher. The one thing I do praise you for and why we also worked on redirecting our sons though they did not do hand flapping but they had this finger tapping and leg swinging, it was not because it was harming anyone or we were getting complaints, but I or we knew inside they were capable of at least minimizing it. Yes, we did have doctors and family say "that is normal for those kind of children because they will tend to act like babies for the rest of their lives" so yes, the teacher part of me like I encourage any child is to live to your full potential but also you would never know if could succeed unless try. When I was teaching, we would encourage redirection with some of the students as part of coping skills however it was important that parents felt comfortable and were positive with it. Parents knew their child more often than us, unless they were ones that left them with others when not with us, then we relied on that relationship as well. Some of the parents were all for it, but were still inside a bit insecure about if it was causing unnecessary stress on the child. For another parent, it was difficult to get the support from other family members such as the mother in law who cared for the child on weekends while she and her husband worked. She did not want to disturb the child, just make sure he did not get hurt, make sure he was fed, and quiet. The redirection process stopped on Friday evenings and restarted Sunday evenings. So personally I have seen 3 views, the ones that get right into it, those that are for it and try but due to circumstances are on again off again. Then there are those that are skeptical because from whatever outside forces they believe this will not work for their child based on just being autistic. It is a proud moment now that my one son can tell on his own when he is "feeling" the action coming on and redirect on his own. Sorry for my own rambling.
ReplyDeleteHi,
ReplyDeleteI am wondering If you notice a difference in the ways that your children with FAS and ASD act? I have done research into both topics and it seems like there are a lot of similarities between FAS and ASD. In your experience how would one know if a child has FAS or ASD?
Thank you
Miss K. I do see so many similarities in Tate and Sydney and their disabilities. The characteristics are so so similar. I saw a chart once comparing the two and it was amazing. Unless you know if there was drinking or not, I suppose you cannot be sure about FASD. I do know there was not a drop of alcohol in Tate's system at any point during his nine months in the womb. I was his birth mother. Sydney's birth mother was likely an alcoholic. She has so many physical deformities that are small and unnoticeable unless you know her. All are consistent with FASD babies.
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