Ten things I have learnt as a special needs parent

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My children have extra needs. Isaac has classic autism, global developmental delay, neurofibromatosis type 1, vision impairment, learning difficulties and he is non verbal. Naomi has motor difficulties, delay in some areas of development, high anxiety and autism. In the five years I have been learning and growing with them I think I have learnt just as much as they have. Here are some of the things I have learnt about parenting special needs children:

1. Get as much help as possible.

From charities, support groups, financial advice, therapists, and people who will pray. I can’t do this on my own. My children need intensive and on-going support. I am only one person. I can not possibly know all the ins and outs of any benefits they are entitled to or what help could be available. Going it alone when there are people willing and able to help will not benefit my children. And it will only exhaust and frustrate me trying to be everything to my children. Asking for help is the first step to getting help.

2. Listen to advice of others.
Yes I know my child better than anyone. No, not all the advice from others is going to be of use or work for my children like it did for them. But I am not the only one to have walked this journey. Sometimes being teachable and humble enough to admit what I am doing may not be best is what will bring the breakthrough. Being willing to change could be what brings the answer I need. Learning is part of growing both for my children and for myself.

3. Make myself and my child known.
Self refer to professions and agencies wherever possible. Keep in regular contact with the team working with your child. Know their names and the targets they are working on. Call charities and support lines for advice. Make people aware of your child’s needs. Ask the supermarket for a suitable trolley for your child, or if they could possible turn the music down. If you don’t ask, you won’t get. They have no idea why he is screaming so if they can do something to help, just ask them. It helps me and my child, and it educates others too. It goes along with asking for help. Don’t be ashamed of telling people the needs of your child before you go somewhere. We know our children but others don’t so share your knowledge with everyone who works with them. My son is non verbal so he relies on me to tell people his likes and disikes on his behalf. And others don’t always know the signs of anxiety in my daughter.

4. Educate yourself on what professionals do.
I used to think the speech therapist would get my child to talk within a few months. I was devastated when she first mentioned thinking of other ways for him to communicate. I was sure she would teach him to speak, after all she was called a speech therapist? I thought the educational psychologist would educate my child, not just observe. I expected the paediatrician to give me a way to stop my child head banging. Reality is that their jobs are so different to how I first perceived them. Now I understand the difference between an occupational therapist and a physiotherapist I know best who to speak to when my child has issues and I know who to chase up for adaptions to my house. Even knowing wether they work for social work, health, education, or a charity makes a difference to how much authority they hold and how much they can help.

5. Do what you need to do to get sleep!

sleep
It was a huge issue for me to think about giving my child melatonin to help him sleep. But he was suffering from the lack of sleep and so were we all. It was cruelty to continue as we were doing. They say to ‘sleep when they sleep’ but what do you do when they just don’t sleep? I remember when my children first started nursery; there was so much house work to do, so many things I wanted to do while they were out, but my body just yearned for sleep. And I still sleep when they are out if I can. I am no use to my children if my body can not function and my mind is not alert. It is ok to admit you need rest and sleep. If it takes co-sleeping with your child, or having a light on all night, or even having to use the television to get them to sleep, in my book that is ok. For us it takes my son pulling the duvet cover off before he will go to sleep. We all need sleep, parents included! I never valued sleep so highly until I had children!

6. Try and avoid the path of isolation.
Oh that is easier said than done. When your child has no understanding of social rules, has sensory overload and high anxiety when leaving the house, or you have safety concerns taking them out, it is easy to become isolated. There are online support groups for those times when getting out truly is impossible. But nothing beats a hug from someone who understands. And fresh air is so invigorating, even when it is pouring with rain. Even talking to a neighbour makes you feel stronger. Ironically since many children with special needs get transport to and from education the parents are less likely to get out that other parents. Yet these are the very parents who need to get out and make friends at the school gate. Isolation leads to depression and loneliness. I have been there. And I could easily go there again. So I make us go out sometimes. And most times it is worthwhile. The majority of times it is to groups with other families in similar positions, but by going to these things you feel part of something. You feel someone cares, you see others dealing with the same things and you feel far less alone. And that is priceless.

7. Learn about your child’s diagnosis.
Do what you can to get to training courses. If child care is an issue tell the course provider. They may be able to help. If they can’t at least they will know why people are not attending. These courses are wonderful for meeting other parents and hearing information and strategies to help your child. Knowledge is powerful. Read books, study online and ask those working with your child. Every child is unique but knowing how your child understands the world or possible future issues to look out for is invaluable in knowing how to care for your child. I knew my son was vision impaired but I had no idea how to prepare visuals and know what he would be able to see. I knew he had a tumour condition but as he is non verbal I had no idea where, if at all, this could be causing him pain. Learning about his conditions has made me a fellow professional in caring for him. I can advocate better for his needs when I understand those needs better. And it helps to know the ‘lingo’ of the professionals too. I can now explain to others who ask why my children are struggling with toilet training. They are not just lazy!

8. Don’t sweat the small stuff.
I fight big battles every day with my children. So some battles really pale into insignificance. It is all relative. My son will only wear his red school jumper every single day of the week. Other than pyjamas he wears his jumper at all times. He would sleep in it if he could.

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Would I like him to wear other clothes? Of course! Does it really matter? No. He has seizures, he is non verbal, he can not care for himself at all, he has very limited communication, he eats things that are not edible, and he is developmentally only 18 months old at aged 5. So on the grand scale of things the clothes he wears are not that important really. My daughter has a very limited diet and last week she had chocolate for breakfast one day. It is far from the healthiest of breakfasts but when she is underweight, has food anxiety and does not recognise hunger or thirst at aged 5, I would prefer she ate something rather than nothing. We can work on her choice of food another time. For now she is eating. As a parent of two special needs children if I fought every battle I would be exhausted, crazy and overwhelmed. So some things get left for another day. And that is ok. It may never be perfect.

9. Don’t dwell on what your children can’t do. Celebrate what they can do.
Life is so negative. Disability forms are extremely negative. To get your child the support and help they need often means dwelling on the negatives. Seeing what other children their age (or even younger) can do can be depressing. It is one of the hardest things for parents of special needs children who attend mainstream schooling as you are faced daily with children achieving effortlessly what your child has been struggling with for years.
One of the ways I counteract this is to look back on my children’s photos regularly. It reminds me that although my daughter did not walk until 2 and a half, and my son did not walk until 3, they did walk. And now they can run, climb, sit themselves and hold a spoon. I look at developmental milestones as achievements but ignore the ages. And I celebrate everything. I got excited when my boy first pointed just before his fifth birthday. I got excited the first time my daughter told me another child’s name. Realising both my children know how to turn the pages in a book and now know when it is upside down brings me great delight. I could easily get depressed every time the nappies get delivered and I realise they are for my 5 year olds. I could cry thinking my son can not speak. But that doesn’t help them, or me. So I take delight in them instead. And enjoy playing with them and having fun with all the things they can do. I chucked the shape sorters in the bin and let them pour magnetic letters into cardboard cups instead. Much more fun.

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10. Enjoy your children and have fun.
With all the therapies and courses and medical appointments it can feel like everything you do with your child has to help them communicate, or get them to eat something new, or help them develop a new skill. But what does your child want? They want you to play. I spend more time on the floor playing trains than I do on the phone somedays. There are times when three hospital appointments in one day is just too much. So I reschedule one and spend time playing with my children. Yesterday they climbed into bed together and I became the tickle monster. It wasn’t speech therapy, or physiotherapy, or intensive interaction. It was play. When my son goes into his own world staring out the window I sing about the rain. And we have fun together.window

For all their disabilities and challenges and additional needs they are two little children who need love, laughter and fun.

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And the most importand thing I can give them is my time and love. Together we will keep on learning and growing.

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6 thoughts on “Ten things I have learnt as a special needs parent

  1. I identify with a lot of that especially the clothes issue,ive had my autistic son on my own for 10 yrs and still as hard today as the 1st day but he is my world and I couldn’t think of life without him

    Like

  2. Absolutely fantastic Miriam and 100% right. I love all your insights. It helps me too as well as other parents and carers. Some things we just can’t always remember or do not know.
    Dawn M Robertson xxx

    Like

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