The secret epidemic affecting special needs parents

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I had a message from a fellow special needs parent this week. Two words of that message have impacted on me greatly. She wrote:

I’m struggling

It is so common for me to hear this. It is the centre piece of every support group, the most common theme on online  forums, the single most heard words when I meet up with people.

For some of those parents it is so bad that I encourage them to see a doctor for support.

In my years as a special needs parent I have found there is a secret epidemic affecting so many special needs parents and it needs talked about: We need to talk about depression.

Depression in the special needs mum or dad is so understandable but too often goes unnoticed.

People see a mum crying and think she is having a bad day. What they don’t know about is all the other nights she cried in private and no-one knew.

My eyes are more tuned to see people struggling since I have walked that path. I know what it is like to look at my child and worry for his future. I know what it is like to feel there is no hope. I recognise that feeling of failure when you realise your child is just not developing as they should. I know the pain of taking your child to hospital when they should be outside playing with friends.

It is isolating when your child has special needs and it is ok to admit that.

Society sadly expects us to be positive, upbeat and encouraging and often I see parents who are so emotionally overwhelmed, so sleep deprived, so beaten down by the system, that they have so little hope.

When you have a child who struggles in school everyday, a child who won’t eat, or has no friends, or is being bullied for being different, or who can not play in a park as the equipment is unsuitable for their needs, how would you feel? If you child was denied the support they need, or could not communicate, or is living in pain every day would you not be heartbroken?

Is it any wonder there is an epidemic of depression among parents of children with autism?

While so many are on medication, and this is vital, we also as a society need to recognise that special needs parenting is exhausting and draining.

Medication is wonderful but what about better support and understanding for our children, better care for those in society who are full time carers, training for staff so they can better meet the needs of the most vulnerable, and a society less prone to judge and quicker to encourage?

The current epidemic of depression among autism families is concerning but what worries me more is that continual budget cuts and ignorance in society is breeding not only depression among the parents but sadly I am now seeing siblings, and even special needs children themselves, struggling with the same issues.

We need to recognise this epidemic and do something about it now.

Don’t ever be afraid to tell someone you a real struggling. Don’t ever be afraid to ask for help. Together we can support each other and help make a better future for us and our children.

 

This post first appeared here.

What holidays??

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This afternoon my children start the long summer break from education. My daughter will leave her nursery years behind and begin her formal education in August and my son will have completed his first year at school and will say goodbye to his teacher for the last time as she moves to another school. Except, unlike most children, neither of them have any idea what is going on.

For ten months Isaac’s life has been consistent. He has spent 6 hours a day at school wearing his beloved red jumper and being with the same four other children and staff. He has grasped the routine of swimming, sensory room visits, school dinners and outside playtime. He has become accustomed to going on a taxi journey every morning. He has no concept of holidays at all so seven weeks without this consistency and routine will really confuse him. He will still insist on wearing his red school jumper, because that is what he always does.

He might be on holiday from school but he won’t get a holiday from his autism, or his learning difficulties, or his neurofibromatosis, or his developmental delay. And we won’t get a holiday from them either.

By the time he has adjusted to any new routine of being at home, going trips out, or eating lunch at home, it will be time to start preparing him for his return to school.

While his teacher, speech therapist, support workers, and even his respite carers all get a summer break, we, his parents, have to become all of the above and more in order to keep his development on track and continue to encourage his communication. Except, unlike the professions, we don’t get a full nights sleep, or a wage, or have access to wonderful resources. We get to do it without training, support or a break. We do it out of love.

For three years now all Naomi has known is nursery life. We have read books about school, she has had a few visits, she has seen photos of what her brother has done at school, and we have her new uniform and school bag ready. But still she asked yesterday morning what would she do when she no longer goes to nursery! Because until the reality of starting school happens she can not ‘imagine’ herself doing anything different. Like all 5 year olds she lives in the moment. Seven weeks away is like years away to her. As she hears all the staff saying goodbye, as she hands them presents to say thanks, as she empties out her tray of all her art work and letters, she still hasn’t fully understood that she won’t be back there again. As adults it can be hard to think what any new routine will look like and it can take time to adapt to changes. It will seem strange for me not to hang her coat up on the peg we have used for years now, to put her slippers in her bag for the last time or to drive out the car park knowing I won’t be there again. I find it hard to imagine my tiny five-year old will be wearing a shirt and tie or school pinafore in just a few months time. This change is big for me, so it is huge for my daughter.

So we say goodby to her key worker, her learning support teacher, her speech therapist, her assistant Head and Head teacher. I look at their faces and realise just how many meetings we have attended together over the years, how many times we have discussed my daughters difficulties, how many strategies we have worked on together and how many forms we have all filled in. They now get a holiday from all this. And while we may get a break from meetings and discussions with all these professions, and many others beside, we will still have to work on communication strategies, self help skills, independence, gross motor development and toilet training throughout the summer. Once again we will be working on all these without training, support, sleep or access to the resources they have.

Naomi’s challenges won’t disappear for the summer. In actual fact they may become more pronounced as she struggles with the lack of structure, becomes more social isolated due to not being around her peers and becomes even more attached to me and therefore more anxious when she is apart from me. While she will be delighted to not be forced into social situations or have to join in with others, seven weeks of being allowed to play on her own, being restricted by the needs of her brother, never being away from me and not being challenged in her communication with others will have a big effect on her confidence socially and in her general development.

While I will do my utmost to keep my children entertained, stimulated and happy throughout the summer I also need to keep working on their communication and social skills and their physical and mental development. And we still have hospital and clinic visits throughout as well. Except now we have to take two children along to them all.

I know all the professional who have worked with my children this year deserve a break. I know it is good for my children to have a rest from formal education too. But while they all begin that break at 1pm today the batons gets passed to me and my husband.

Seven weeks of no speech therapy support; no breaks while the children are at school and nursery to get on with paperwork, housework or shopping; no respite; no school meals; no access to the support and resources his school has to offer; and no extra funding to provide any extra support the children need.

Holidays? What holidays??

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When you watch your child struggling

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It’s the end of term here in Scotland which traditionally means schools and nurseries relax the rules a little bit, organise sports days and school trips and have end of year awards ceremonies and graduations. Parents love them, teachers spend more time decorating rooms, organising teams and taking photographs of children than they do teaching, and social media fills up with post after post of proud parents posting of their child’s achievements. But for some children, my own two included, all these changes bring stress, anxiety and confusion.

My children don’t excel in sports, or academics. School trips makes their anxiety levels soar. And the relaxing of the rules is so confusing for them both.

So while parent after parent takes pride in their child winning races, telling them all the details of their school trip or enjoying all the wonders of this years school fair, I rejoice in the simple fact of my child taking part.

Isaac had his first ever sports day at his special needs school last week. I knew he had been preparing for it when his legs had even more bruises than normal on them and he came home upset. They sent me home a photograph of his assistant helping him bend down to pick up something in a race. I have no idea what else when on that day. But I do know he took part in some of it. And that makes me incredibly proud. He has no concept of sport, or competing, or what he was supposed to do. He would have been much happier running around the hall flapping in circles. But with constant support he took part. It was a struggle for him and his teacher. But they tried. And that was worth getting a gold medal in my book!

He had his first ever school trip this week. His class of five children went to the safari park. But his taxi arrived that morning and it was a different colour, and his beloved food catalogue wasn’t there as it was in the other car. No catalogue, wrong car and the added confusion of a ‘different’ day were all too much and it took thee adults to carry him into the taxi kicking and screaming. I should have stood outside the school gates waving him away on a bus like every other parent of a child in mainstream school. Instead I was still hearing his crying as the taxi pulled away from our street. My heart was broken seeing him struggle so much. And knowing he can not come home and share with me the joys and excitement of his day because he can not speak. He came home with three photographs in his bag. The tears of pride I had when he chose to sit on my knee and point to those pictures. That was worth the struggle to get him into that taxi.

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Naomi had her first sports day at nursery last week too. As all the other children independently came out of the class and down the three stairs into the garden she had to be supported by a member of staff. As all the others formed a line and filed into rows of seats she just stood there. She had no idea of the social ‘rules’ going on so could not follow them. She had to be seated on the last seat away from her friends. As the races began her face went paler and paler. As she watched children run across a small section of garden, she looked so lost and was huddled into the rows in front by staff and pupils alike like a little lost sheep just following the crowd. When it came to her race she never moved until the word ‘go’ was said and she ran as fact her little legs could go, which isn’t very fast at all. The others finished and the next group were all lined up but she wasn’t even at the finish line yet. The tears in my eyes were a mixture of sadness, pride and overwhelming love all rolled into one. The staff and parents cheered her on like she was one of their own. And finally she made it. The others full of energy while she was exhausted from just one short race. With difficulty and support she completed every race in a similar manner! Last by a long way every time. Thankfully there was no sack race or hurdles as she still can’t jump. As all the children received medals and had pictures taken there was a massive round of applause for my daughter as she stepped forward to get hers. We had all watched her struggle. And we all celebrated her victory.

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This week she struggled again. This time it was the nursery graduation. The hat and coat annoyed her so much. The noise of all the children and adults was so loud for her. The heat in the room made her feel sick. But she sang, she watched videos of everyone’s time in nursery, and she clapped for the other children receiving their certificates and school ties. All the while her face was getting paler and her hands were moving more in front of her showing her anxiety. As all the others jumped excitedly onto the made up stage she needed two members of staff to support her up. She stood at the top terrified. But she did it. I can not begin to tell you how proud I was of her. At that moment it didn’t matter one bit that she doesn’t speak there, or that she is still wearing a nappy, or that she has autism. At that moment in time I was so proud of her for getting to that point, for overcoming her struggles and taking part.

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Tomorrow we have Isaac’s end of term celebration at his school. I know he will struggle. But I know with support he will get through it.

It is hard to watch your child struggle. But it is even harder for them. Sometimes courage can be found in children who are trying hard to take part despite everything.

They say it is the taking part that counts. And even though Naomi has had nose bleeds, fainted,and cried with it all this week and Isaac has bit himself, screamed and gone deeper into his own world as a result of struggling with the changes end of term has entailed, they have both made me so proud.

I watched my children struggle. But I watched them overcome too. It’s been a year of struggles but also a year of breakthrough.
Life really is about taking part. Because for many children, like mine, that is an achievement all on it’s own.