25 Confessions Of A Mum Raising Kids With Disabilities

It's time to open up.

I had great plans for being a parent. My children would play board games with me at night, have friends around for tea, talk to me enthusiastically about their school day, and always say please and thank you.

Then I had children.

Nowadays, there is more technology than board games, but I still thought we would read stories before bed, go shopping for clothes, kick a ball around in the garden and bake cakes.

Then I had children with disabilities.

Parenting for me is intense. It includes working with a large team of health and educational professionals, involves lots of trips to hospitals, means sending my child miles in a taxi to school and consists of huge amounts of paperwork. But it is still a lot of joy and love.

It is a different style of parenting. I have thought and done many things I never dreamed I would. Some things I'm sharing are weird, some wonderful, and others just brutally honest.  Here are my top 25 confessions as a mum to two beautiful, funny and highly individual children with extra needs:

1. I have carried out speech therapy in a public toilet.

My son has an obsession with hand dryers currently and I am trying to encourage him to say "on." Where better to find a whole bunch of hand dryers than in public toilets? Yes, I seriously asked strangers to wait to dry their hands in the hope he would vocalize. I am THAT desperate to have my son talk!

2. I rewarded my son's defiance.

So he finally at almost six worked out how to shake his head to mean "no." You've got to reward and encourage communication, even if it does seem crazy saying "well done" when he has just appeared to go against what I asked of him.

3. I have been known to record the bedtime hour of CBeebies so we can watch again at 3 a.m. when they wake up in the vain hope the kids will still realize it is bedtime!

4. I made my son dinner for breakfast.

His current food obsession is mashed potato and gravy, and you just know it isn't going to go well with corn flakes on the side. So mash, carrots, peas and meat for breakfast it is then. Mornings start at 5 a.m. anyway.

5. I have spent hours in shopping centers with my children and not boosted the economy in any way. Lift doors, escalators and hand dryers in the toilets are far more interesting.

6. I have nodded and agreed at meetings with professionals even when I have no intention of doing what they suggest just to get them to leave my home or have a meeting finish. It is just easier sometimes.

7. I have sat in my son's room staring at his bubble tube even when he has been at school. If it calms him down, it may just work for mum too.

8. I have resorted to bribery just to get everyday tasks done. Sometimes there is just no other way.

9. I have taken myself to the "naughty step" just to get some time away.

10. I have cried publicly in a supermarket because they had no microwave mashed potato left.

11. I have emptied the inside bag of breakfast cereal into an old box because the packaging has been changed by the manufacturer and the kids won't eat it any more.

12. I have seriously considered installing a lift or a hand dryer in my own home and actually googled the costs involved.

13. I have stayed up all night researching my child's conditions in the hope that someone, somewhere is working on a cure.

14. I have taken photographs of lines of toys and elaborate train track set ups so they can be restored to the satisfaction of my daughter in the event of them accidentally being touched.

15. I have felt tempted to tell people my child has a contagious illness so they leave her alone and don't speak to her. It may prevent the tears and tantrums when she gets home because her personal space was intruded upon and she could not cope with the sensory overload of people asking her questions.

16. I have seriously considered saying my children are much younger than they are to avoid having to mention why they can't jump, climb, talk and still want to be carried.

17. I have kissed a waiter in a restaurant because he was willing to get five different options for drinks for my son so he could put his hand on the one he wanted. Some people are just angels in disguise.

18. I have washed and dried my daughter's comfort blanket only to sit on it, walk on top of it and stick it inside my jumper for a while so she doesn't notice it smells different or hasn't got that dirty worn look about it.

19. I have rushed from one hospital to another because I was frightened to change appointments that clashed as I knew we would have to wait months again for fresh appointments.

20. I have worn my hair down and put on long-sleeved clothing to hide the fact my son attacked me when he was angry and my arms have bite marks and scratches from a 5-year-old. Why is it OK to admit a partner is abusing you but still taboo to say your child injured you?

21. I have wrapped a packet of nappies up in brown paper to take into my daughter's school so it looked like a parcel to shield her embarrassment at being incontinent in a mainstream school.

22. I have told my daughter it is OK not to share. This girl would give away everything to others at her own expense but freaks out if something special of hers is touched. Sometimes, others have to recognize when something is very special and learn that not everything has to be shared.

23. I have ignored my phone ringing. Some days it just gets all too much.

24. I worry about the future.

25. I have amazing children. I have a husband who loves me. I am very blessed. But I want to confess that often I still feel sad. And very alone.

So there you have it. They say confession is good for the soul. I hope that is true.

Follow Faith Mummy, the author's blog, for more of her work.

Cover image via Karl Fedrickson / Unsplash.