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.
So there is more technology than board games, no friends around and no chit-chat about the school day, 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 special needs.
Parenting is now intense and includes working with a large team of health and educational professionals. It involves lots of trips to hospitals. It means sending my child miles in a taxi to school and consists of huge amounts of paperwork. But it is still a huge amount of joy and love.
It’s a different style of parenting. I’ve thought and done many things I never dreamed I would. Some are weird, some wonderful and others just brutally honest. Here are my top 25 confessions as a mom 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 a current obsession with hand dryers, and I’m 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. Yes, I am that desperate to have my son talk!
2. I rewarded my son’s defiance. At almost 6, he’s finally worked out how to shake his head to mean “no.” You’ve got to reward and encourage communication, even if it does seem odd saying, “Well done” when he has just appeared to go against what I asked of him.
3. I’ve been known to record the bedtime hour of “Cbeebies” so we can watch again at 3 a.m. when the kids wake up in the vain hope they’ll still realize it’s bedtime.
4. I made my son dinner for breakfast. When his current food obsession is mashed potato and gravy, 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. No rush when mornings start at 5 a.m. anyway.
5. I’ve spent hours in shopping centers with my children and not boosted the economy in any way. Elevator doors, escalators and hand dryers in the toilets are far more interesting anyway.
6. I’ve 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’s just easier sometimes.
7. I’ve sat in my son’s room staring at his bubble tube even when he’s been at school. If it calms him down, it may just work for Mom, too.
8. I’ve resorted to bribery just to get everyday tasks done. First dressed, then iPad. First nappy change, then chocolate. Sometimes there is just no other way.
9. I’ve put myself on time-out just to get some time.
10. I’ve cried publicly in a supermarket because they had no microwave mashed potatoes left.
11. I’ve emptied the inside bag of breakfast cereal into an old box of cereal because the packaging has been changed by the manufacturer and the kids won’t eat it any more.
12. I’ve seriously considered installing an elevator or a hand dryer in my own home and actually Googled the costs involved.
13. I’ve stayed up all night researching my child’s conditions.
14. I’ve 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’ve felt tempted to tell people my child has a contagious illness so they leave her alone and don’t speak to her. It may avoid the tears and tantrums when she gets home because her personal space was intruded upon and she couldn’t cope with the sensory overload of people asking her questions.
16. I’ve 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 carried.
17. I’ve 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’ve 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’ve rushed from one hospital to another because I was frightened to change appointments that clashed because I knew we’d have to wait months again for fresh appointments.
20. I’ve 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’ve told my daughter it’s 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 special and learn that not everything has to be shared.
23. I’ve 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 so 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 this journey on Faithmummy.
The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.
Miriam is a 39-year-old mother of twins living in Scotland. She has a degree in teaching, is a full time carer and has a strong faith, yet nothing has prepared her for parenting two children with special needs. Her children are her life, her inspiration and her reason for living; one has yet to say a word. She started blogging in 2013 and has never looked back.
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