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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Please stop blaming the parents!

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It starts from the minute you get a positive pregnancy test. Somehow those two blue lines seem to propel you into a world where everyone feels they have a right to judge you, watch you, give you advice and generally make you feel like you are doing everything wrong.

“You really shouldn’t be doing that in your condition”
“I’ve heard that isn’t something you should eat when pregnant”
“Oh, don’t forget to take such and such a vitamin. I took that when I was expecting wee Johnny and look how great he is doing now!”
And so on…

In fact you could even say before you finally fall pregnant that it starts. When we were trying for a baby (it took almost 10 years before I had the twins) everyone seemed to automatically think I was to blame! I wasn’t eating the right food, I just needed to take a holiday, I needed to stress a lot less, or just ‘forget about it and it will happen’ or even the comments about my personal medical life and private life at home. Although I know most people were only trying to help it felt like I was being judged and blamed for my inability to conceive.

Then there’s the pressure to breast feed, wean a certain way at a certain time, only use certain products for your baby, only let them watch a certain amount of TV, sing enough songs to them, take them swimming every week and so on.

So when my children struggled to reach milestones when professionals said they should it all started again. Was I encouraging them enough? Were they put in walkers for too long, or not enough? Did I have push along toys to help them walk? Was I reading to them, singing to them and spending enough time with them? Because it clearly had to be my fault that these milestones were not being reached when books clearly stated babies should be doing certain things at certain times. And so parents, doing everything they can to help and support their children, start feeling guilty very early on that somehow they are failing their children.

At what point do professionals start realising that the child needs help? Or start looking into the child’s development to see if there are any signs of a disability or something abnormal? Even when it seems obvious a child is showing signs of a developmental delay or autism or perhaps a genetic disorder the system still seems set on blaming the parents.

I have been in the system long enough to see now that the first thing all the professionals do is look to the parents. Speech therapists send parents on courses, early years workers come to the house to show and teach parents how to interact with their child, paediatricians suggest ways to help them sleep or tell you to try toilet training them. Psychologists tell you about the importance of boundaries and rewarding good behaviour. Sometimes it can be so patronising.

Now don’t get me wrong, I have learnt some important things from many of the courses I have been on and made friends with others in similar situations too. I am enjoying learning to sign songs to my son in makaton to help him understand them better and it is always good to be reminded of proven parenting strategies. But that does not mean that the difficulties my child has are down to my bad parenting. I get it wrong some days, what parent doesn’t, but does that mean I am to blame for my child not being able to talk? Or not being able to jump or climb?

While I do understand there are a small percentage of children with difficulties caused directly from harm inflicted whilst in the womb or parents not able to look after their children these are very much in the minority. The vast majority of parents I know whose children have any sort of developmental delay, or autism, or genetic conditions or additional needs in any way do a huge amount for their children, often devoting all their money and time to support and help them. Far from being blamed for their difficulties they can take credit for their achievements against all odds. I know parents who spent their days fighting for services to support their children and nights being up with a child who does not sleep. Parents who have established and run charities to support other parents and families to give children opportunities to succeed despite their challenges. Parents who spend hours making visual timetables, laminating and printing visuals for their child, attending workshops and training courses to learn more about their child’s condition to support them better. Many are still fighting against the constant guilt placed on them for giving their child inoculations, or working as well as being a parent, or for not having the money to pay for private services or the best school. Some are spending years trying to get their child diagnosed when all professionals want to see is poor parenting when the child is actually struggling with a condition that affects their behaviour, understanding or ability. These parents are far more of the norm.

So when my child is screaming in public and others are looking at me and judging me because I physically lifted and carried a five year old who ‘ought by now to know to behave in public’ or people stare at me because he is still in a buggy. Or they read yet another media article that says autism and other such conditions are just an excuse for bad parenting or a modern phenomen. Or my child has a bad day at school and the diary suggests ‘is there anything going on at home we should know about?’ It just adds to the guilt and the blame. And that isn’t helping me or my child.

So please media, professionals, schools, and society look at how amazing parents are, especially parents dealing with children and adults who have extra needs. Yes we may get it wrong some days, because we are only human like you. But we are trying, learning, supporting and doing the best we can for our children. We don’t need guilt added into our already difficult lives.

Please, stop blaming the parents!

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