Respite and Cement

After years of asking for respite for Ethan, we finally go it, shortly after baby D was born. Respite, is badly needed for any family caring for any person with extra needs.

I never, ever would have imagined that I would be, literally begging, begging for respite for my child. I didn’t even know about respite until Ethan was diagnosed, back in 2008. Finally, in 2014, we were given one night, every 6 weeks. This took six long years of asking service providers for support and help as we faced a very different life, than any of us could have planned for.

For years we were brushed off, “There is a waiting list”, “There are emergency cases, respite is full”, “Ethan’s needs are difficult”- which was always my personal favourite. Ah yeah they are difficult,ya dope, why do you think I’m asking for a break once in awhile! – I never said this, as I am a firm believer in ‘be careful who you snap at, you may need them one day’( okay, I tweaked that …you get the idea!) . I knew, eventually I would get into respite, so I couldn’t be labelled ‘that mom’. Once we got accepted, then I’d be letting them know if they annoyed me- once you are given respite, they can’t legally take it from you!

Baby D would have only been 1 month, when I rang Ethans social worker( he has had, roughly 6 since 2008) so I had no idea what kind of lady this one would be, but I had, had enough. Turned out, she was as green as could be. She was straight out of college
and handed case files, Ethan’s included.

“Hi, I’m Ethan’s mom, Ger”
“Oh hello, you got my letter. I’m Ethans new social worker, Sarah”
“Yes, can I speak with you for a few minutes, your letter said to call anytime. Is this a good time Sarah?”
“Of course. What can I do for you?”
“Well, Sarah. I’m cracking up. I’ve just had a baby, a horrible c-section, which is now infected, I have had a blood transfusion, which Sarah, kept me longer in the hospital,as you can imagine. Ethan is wild. I can’t sit, even when the baby is sleeping. I’m here all day, everyday, alone. I am not strong or quick enough to get to Ethan before he gets to the baby.I simply cannot cope without some form of respite, which we all need Sarah.” I took a breath, I knew I sounded like a stressed out mom, but I was one. I didn’t lie to her.
“Yes Geraldine, we are very aware of your circumstances. We are also aware that you have a big family. Could they not help? Respite is just too full”
I felt the blood rush to my head. “Sorry? What? I don’t understand what my family have to do with it? I’m confused Sarah” I tried to stop my hand trembling. I was mad.
“Could they not help is what we are asking?”
“My family, I have one sister who will babysit, that is it Sarah.The other sister is in Australia, so that’s a bit difficult.My brothers couldn’t look after an egg, let alone a child like Ethan. My brother with down syndrome probably wouldn’t be a safe bet, my parents won’t offer ever,but in fairness they are carers for my eldest brother and I’ve another sister who ,when I do ask, is busy living her life.So Sarah,” I gritted my teeth, my temper building,” So Sarah, you tell me how I can get them all to help?”
Silence. So I took this as an opportunity. “My family, don’t get Ethan.They are all busy living their own lives. The one sister who does help, is sick herself. D’s family are his parents, both in their 70’s, who do it all for us, without question, but I’m afraid I’m killing them slowly with the amount of care Ethan demands. Do you actually get that Sarah”
“I’m so sorry, we are supposed to ask about extended family”
“Well,make note of that there” I exhaled a long, deep breath, trying to calm myself.
“I have been in contact with the Respite service and they simply have no roo..”
“Sarah, for six years, I have accepted that. I know you are now going to tell me about emergency cases. I have also accepted that and felt for those poor families. Sarah, we are an emergency. We are one of those families” my tears fell and hit the floor as I dropped my head. It was the truth and it cut me like a knife. I was begging this girl, to take my son into a house with professional carers, just so we could have a little bit of normal. I needed him to go. That is an awful, awful feeling. The amount of guilt that comes with that statement is like a heavy cement block, stuck to your chest, you can’t believe it’s there and you don’t know how to lift it off, you just know you are the one that placed it there.
“I am so sorry Geraldine. I really am. I understand..”
“You do not Sarah! Don’t tell me you understand.Your text book couldn’t have taught you how to fucking understand Sarah.” A voice in my head reminded me that I needed her, I needed to calm down.”Sorry Sarah, for yelling and cursing” I bite my lower lip. I hated saying sorry especially when I wanted to throttle her or anyone really at that point.
“It’s okay Geraldine.There are two new families, the parents couldn’t cope, they threatened to drop the children at the hospital and walk away, you see respite had to step in…”
“Then that’s what I will do Sarah.” I closed my eyes, I knew she went wrong telling me that, I knew I would never drop my jewel Ethan at a hospital and walk away, but I needed Sarah to believe I would.
“Wha..What? Geraldine I told you that in confidence”
“Sarah, six years is long enough. I need respite, now. I can’t cope, you gave me an idea, I will do it” my eyes stung as Ethan walked over and kissed me. I felt like Judas.The tears fell from my eyes once more as my bruised heart took another punch.
“I will actually have to log that Geraldine. Are you serious?” she sounded very concerned.
“Yes Sarah I am” I hung up the phone and held Ethan in my arms.

Two days later, Ethan,J,D and I attended a tea party in the respite house. Ethan loved it. The following day he stayed after school until 8pm. A week later he had his first night away.

We got to go grocery shopping as a family. And yes, that is a simple little thing,but something we can never do with all three boys.

Respite is something we all need as a family- I’ve to remind myself of that from time to time, Ethan has fun there and is well looked after…that cement block is beginning to move.


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