Ethan doesn’t have ‘friends’ like you or I have and this used to upset me.
Yes, it used to upset me, but not so much anymore. This took a long time for me to come to terms with. You see, I wanted friends for Ethan but Ethan didn’t really care.
Ethan is a very friendly little boy. He loves nothing more than grabbing, hugging and kissing people…just as quickly he can punch, cry, kick and bite the very same people he was loving on a few moments ago.
These behaviours led me to become a ‘helicopter’ mom. Yes, I’m open and proud that I am that mom!
Ethan has no idea how to ‘behave’ in social settings. Ethan is Ethan. He has no sense of personal space, which makes making friends with his peers very, very difficult, for all involved.
Ethan gets so excited that he will shove, kick, bite and laugh due to the sensory overload of just being around people. He is happiest around people; he is the most hyped up overexcited kid begging to be regulated when around people, especially people his own age. (Ethan stands at under 4 feet tall; his level of understanding is that of an 18-month-old; he is 13 but goes straight to 4- to 5-year-olds as he believes they are his peers.)
He sees no danger. Every child is approachable (i.e., fair game) to Ethan, which has obviously helped me perfect my ‘helicopter’ mom moves!
I don’t like explaining Ethan’s behaviours to parents. Sometimes I get the eye rolls and the tutts and, to be perfectly honest, sometimes I deserve them. I am not always as quick as I should be. Because it is me that knows exactly what Ethan’s behaviours in social settings are like, I take the tutts and eye rolls on the chin.
I apologise to the parents, the child (children) and any small animals that may have gotten in Ethan’s path, but really, what else can I say? If it’s a full-blown meltdown, and not a hyped-up Ethan (Meltdowns can be triggered if Ethan is forced to wait somewhere for an appointment or if Ethan was in a busy supermarket and had enough–where Ethan will hit out, scream and shout the ‘F’ bomb at me, you and whoever else is there), I tend to explain a little while I sit rocking with Ethan on the floor.
Ethan has attended two special needs schools. In his first school, he made no friends. This didn’t shock me, as the children attending that school were cognitively more advanced than Ethan. Considering Ethan’s syndrome is progressive, the writing was on the wall: Ethan needed to change schools.
His current school is a better fit, but still no friends (as such). He has a few classmates who I am pretty sure get on with him, as I have not had many calls since he started this school (regarding his behaviour towards his classmates, that is).
So, Ethan has no friends who call by. Ethan has never had a friend over for a playdate; nor has Ethan gone to someone else’s house for a playdate. And that’s okay.
Ethan does, however, have a family support worker called ‘G.’
G has been Ethan’s buddy for nearly five years now. They go out once a week together for 2-3 hours and do whatever Ethan happens to be obsessed with for that week. It is, of course, a form of respite for us. Ethan loves G and G adores him right back. It is a friendship; a very important one to all involved. G has coffee with me every week and has become a part of our little family.
‘E’ is Ethan’s home nurse. We have only known E for a year but, to be honest, it feels like she has always been part of our family. Ethan absolutely loves her. She finds it hard to get her work done as he insists on sitting on her lap, kissing and hugging her. She has yet to refuse Ethan anything he asks of her. E and Ethan have a wonderful friendship.
‘A’ is one of my best friends. She lives near me and spends a great deal of time in our home. She is great at keeping me sane, but also an amazing friend to me and my family–all three boys and my husband. Ethan adores her. She is able to read him and engage with him; she is his friend.
Ethan has two younger brothers: ‘J’ and ‘D.’ They both play, engage and have fun with Ethan when Ethan initiates it. They also know when Ethan is close to a meltdown or a sensory overload. They know when to back away and leave Ethan to regulate himself, which he does rather well.
Ethan has plenty of people who genuinely love him, understand him and enjoy seeing him. He has people in respite who enjoy him, people at school who laugh with him, and he has us.
He will always have us.
By Geraldine Renton
Read more from Geraldine by visiting her website and Facebook page. Geraldine began to write privately as therapy and recently began writing publicly about learning to live, love and laugh again since her son was diagnosed with Hunter Syndrome.
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