There's a secret world within the world of parenting a child with special needs; a world only some of us parents are privy to.
It is something that is difficult to write about.
Today I discovered that there were a lot more parents privy to this part of parenting than I could have ever imagined.
His face turned red... he screamed...his body tensed...quickly he lifted his leg... dropping it on my leg over and over.
I don’t leave his side. I rarely do. He bites, head butts , pinches and punches.
I am afraid to leave his side incase he hurts himself.
I’m afraid he will hurt his brothers.
I’m afraid his brothers will learn to fear him.
I’m afraid he will not regulate this time.
I’m afraid he thinks I fear him.
I’m afraid that one day I won’t be able to help regulate him.
I’m afraid his medication needs to be increased.
I’m afraid he is hurting and mammy can’t help.
I’m afraid he is trying to tell me something; but I can't hear him.
I’m afraid his brothers think that he is hurting mammy on purpose.
I’m afraid he thinks I don’t love him; while I try to hold his arms down and rock him.
I’m afraid that he is afraid- imagine being afraid and not even able to tell your mammy?
We don’t speak about this because we fear the public will think badly of our children or think we are full of self pity.
I’ve met plenty of members of the public, who have told me (after Ethan has had a meltdown in public) “I wouldn’t let him away with that behaviour”.
Sadly many of us have feelings of shame, shame of what will others think.
My son cannot help his actions and reactions; they can be triggered so quickly and can subside just as quickly.
Behavioural therapy for children like my son can be very beneficial...but as the years pass by my son has lost some of his cognitive ability making it very difficult to engage him.
Art and Music therapy are also beneficial as is animal therapy.
Medication has helped.
There are so many questions we must ask before we even think about medication; especially considering Ethans progressive condition.
Medications, dosages and getting everything ‘right’ takes time and patience, for Ethan as well as us.
But if you’re lucky enough, you will find the right balance, not only for Ethan but for your whole family.
Ethan still has meltdowns. I am still afraid of everything I listed above but and it is a big but these meltdowns aren’t as often nor are they as intensive as they once were.
To those of you privy to this part of parenting children with extra needs, I tip my hat to you all.
You and your children are not alone; we are here, we are quiet...but we are here.
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