Respite is not failure

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It is one of the many ironies about having children with additional needs: we fight long and hard for respite but when we do get it we struggle emotionally to accept and embrace it.

Let me get this straight right from the offset: respite is not failure!

The dictionary defines respite as: “a short period of rest or relief from something difficult or unpleasant”

I want to start by saying I do not find my children unpleasant. Neither do I wish to cease being the parent of two special and unique children. But the reality is my life is very intense. My children need so much more extra support just to get through every day, they have far less independent skills than they should for their age and we have more appointments in a month than some families have in years.

Physically it starts to take a toll at times. My son is three-quarters of my height now and a third of my body weight. Yet he is only six. I still have to physically dress him like a baby, support him climbing stairs, change his nappy and dry him after his bath. His behaviour can be physically challenging and his latest ‘game’ of pulling hair until it comes out into his hand is painful. At times he requires restraint and as he has no concept of personal space he thinks nothing of climbing over me or sitting on my knee for a cuddle like a baby. I still need to lift him in and out the bath and sometimes help him onto a chair. He can not even put his own shoes on.

Sometimes, just for a little while, my body needs a rest. Respite enables my body to recover from the difficulties and gain strength to do it all again tomorrow.

Emotionally it takes its toll at times too. Only this morning I found myself walking home from the local school in tears. I spend a few hours there every week volunteering and today I was working in the class of children my son’s age. As they sang to me in French I realised my six-year-old could still not sing the same song to me in English. That has to affect you. While the children talked to me about Egypt I realised that my son can’t even talk to me about his day at school. And the reality is he may never even say his own name. Everyone needs time to cry sometimes but parents of children requiring extra support need that time even more. The pain is raw, real and is right in front of your eyes everyday. The emotional toll of hearing your child cry because no-one plays with them, or dealing with the emotions of someone laughing at your child in public, watching your child harm themselves in frustration, or dealing with professionals who don’t seem to be listening; it all drains you emotionally.

Sometimes, just for a little while, my emotions need a rest. Respite enables my heart to recover from the stress and gain strength to face it all again tomorrow.

It takes its toll on relationships too. I read recently that parents of children with extra support needs are twice as likely to divorce than others. Wether that is true or not I can sure testify that raising special needs children tests your marriage in ways you never thought it would. How do you find quality time for another adult when your children’s needs are 24 hours a day? How can you support someone else when you often struggle yourself? We all deal with stress differently but getting precious time to regroup and discuss things is very rare when you are either dealing directly with your child or attending meetings and appointments to discuss them.

Sometimes, just for a little while, I need time for other relationships. Respite enables me to be a wife, a sister, a daughter and a friend, all of which make me stronger, happier and healthier and help me be a better mum.

I am so blessed to get three hours respite a fortnight. It is the most treasured highlight of my fortnight. It is no exaggeration that it has saved my marriage, restored my physical health and given my emotions time to settle. It is also helping my children learn that others can care for their needs and help them just as much as me.

I need respite. That is not a sign of failure but in fact a sign of success. It shows I know my limits and I am not too proud to admit them. It shows I am willing to let others support me. It shows I am human.

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2 thoughts on “Respite is not failure

  1. Such touching reading. We do respite care in our own home for children with complex and additional needs. They stay overnight with us. We know it helps families to regain their strength and to do things they can’t do especially with siblings. We absolutely love what we do. It is home from home for the children and the families can relax knowing their children are happy and settled. We feel privileged to be a part of the families and to be able to help.

    Liked by 1 person

  2. Miriam, you always make me cry because you are always spot on, and so beautifully articulate. Ben was at respite last night and gosh, how I miss him! However, it was such an EASY (long) evening and morning with just his siblings at home. Ben has enjoyed a cinema trip too with new friends. An essential service for families like ours’!

    Like

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