Hunter Syndrome is a life limiting condition for which there is no cure.
Ethan has hearing loss, vision loss, sensory processing disorder, autism, asthma, global developmental delay, physical disabilities and every organ in his small body is enlarged while his heart has a whole range of issues too…this is all down to Hunter Syndrome.
So as you can imagine we tend to get an audience on most of our outings.
Here is the list of advice, cures and all things meant as friendly chat – along with my, ‘general’ response. I am a very sarcastic person – worth bearing in mind before you read further.
1. “Bring sweets around in your pocket; every time he behaves give him a sweet – then he won’t be as long to learn how to behave.”
Should I pat him on his head too and tell him ‘good dog’?
2. “Can’t you give him a ‘smack’ (spanking) every time he yelps and he will soon learn to be quiet.”
Thank you, am I glad he is not your child.
3. “Don’t feed him until he eats what you’ve given him, put your foot down.”
Thank you, that is amazing advice, have you ever seen ‘Gremlins’?
Ethan turns into one of them with no food, like I imagine any of us would.
I think I’ll just stick to feeding him whatever he will eat, thank you though.
4. “In my day, we put kids like him in a home.”
There is a village missing their idiot right now, you know it is OK to read a book once in a while.
5. “Tell, ‘that’, (referring to Ethan) to shut up.”
I cried at this one and eventually plucked up the courage to speak back.
6. “Seaweed, make him eat it; then he will be fine.”
Ammm; sure, Thank you.
7. “You or he must have done something bad in a past life to be dealt this hand, eh?”
Nope, doubt it; I’d say Ethan was a Bull and I may have been a Lion, with his charge and my roar, we probably made a great team.
8. “He is paying for other people’s sins, the poor kid.”
Are you serious? Are you serious?!
9. “If you pray more – you have no idea the power of prayer.”
Clearly, thank you.
10. “Your attitude could be holding him back, maybe if you were a tad more positive and hopeful, the drugs he is on could cure him, doctors do get it wrong.”
I am a very hopeful person, thank you.
Eventually, yes there has to be a breakthrough with research, will we see it in Ethan’s lifetime, I hope so – see all the hope I have?
And the drug Ethan is on has been through clinical trials, the doctors haven’t made a mistake.
What is your experience with medical research exactly?
11. “God is good; he gave you exactly what you could handle.”
Yeah sure, thank you.
12. “If you took care of yourself while pregnant this may have never happened.”
It is a genetic syndrome…I gave him the syndrome, I normally walk away after that.
13. “He needs fish oils; the cure is in that!”
Really? Thank you, I’ll get right on that.
14. “You don’t have more children, do you?”
I do, actually, I have seven more.
15. “Why is he in a buggy? I saw him running ten minutes ago…he is just being lazy and you’re worse for letting him.”
You are observant, aren’t you?
Thank you.
16. “Environment has a lot to answer for with these conditions no one has ever heard of.”
I generally smile and nod at that one.
17. “Two more boys – Really?! Are they like him too?”
They could be triplets, is my go-to answer.
18. “You should see the seventh son of the seventh son; he will cure him.”
Yeah, yeah.. thanks for that (Seventh son of a seventh son is folklore; apparently this son can heal the sick. Yep)
19. “If you ever need me, ring.”
I generally nod at this and thank them, the truth is you and I both know I won’t make that call.
This feels like an empty gesture; if you want to help, don’t leave it to the stressed out mom to contact you, pick up the phone or visit and insist on helping.
21. “I hope your partner/husband is helping too.”
A statement made by a stranger who saw my husband drop us to the hospital and had a chat with both of us.
When my husband left, they decided to make the above statement.
That right there is a judgment made in an instant; you are implying he doesn’t do his, ‘share’.
This is implied often to me and it really annoys me.
22. “Wow, he (referring to Ethan) kicked my son and you’re really going to play the Autism card? My nephew has Autism and he doesn’t act that way.”
Yeah, he is Ethan though, not your nephew.
23. “So how long does his condition last?”
I still can’t make sense of that question.
And a few preferable questions from children…
24. “Hello. What’s your name?”
Said to Ethan, not me.
25. “I like Homer too.”
Said by a child in a hospital waiting room while Ethan threw his , ‘Homer’, teddy around, the said child continued on by doing impressions of the, ‘Simpsons’, which made Ethan laugh and me cry.
26. “Here, do you want to look at my game?”
A child offering Ethan his iPad.
27. “I like your Teddy.”
Another child in a supermarket, while Ethan was trying to regulate himself.
Aren’t children wonderful?!
I haven’t always been able to laugh at the things people say to me; nor have I always been collected, calm or sarcastic in my answers… I do all that now for fun.
It has taken me over 10 years to be able to deal with this kind of, ‘observations’, ‘statements’, and, ‘advice’, in an amusing manner (amusing to me at the very least!)
It is simple; take a leaf out of your child’s book when talking to or about another child or adult living with any sort of syndrome or disability.