I have been in the world of special needs now for almost 17 years, and I am damn lucky.
Lucky because I was told my son would likely never see his teen years.
I am having to sit and watch a relentless syndrome take everything away from my firstborn son until there is nothing left to take.
I don’t share this with you for sympathy, I share it because I hope some parents can take something from this to help them on their journey through parenthood, regardless of their child’s needs or abilities.
1 – A diagnosis is a help; it will help doctors and professionals give your child the best possible care – a diagnosis does not change your child but your path.
2 – Take a trip with your partner ALONE, as often as you can afford it.
3 – Insist on respite, do not be afraid of the word ‘respite’. Other parents have respite but they call it staying with family – kiddies like ours are too much for our aging parents or too complex for family members- and that is OK.
Look into respite, try it out, see how it goes.
4 – Take family day trips as often as you can. If your complex child cannot handle busy places at peak season or at peak time- go off-peak as often as possible. Your other kids will love it too because they won’t have to queue either.
5 – Do not attempt the beach in the height of Summer, instead find a lake or a woodland to enjoy the good weather with the added bonus of shade.
6 – Laugh when your child does something others would be ‘mortified’ over. It makes a great story in years to come and believe me, you will laugh every time you retell it.
7 – Don’t let guilt sit too heavily on your shoulders; even on the days you feel like you’re not doing enough- trust me, believe me- you are.
8 – You are not going to remember everyone who helps with your child, get a small notebook and write down their names and who they are, it is always handy to write down the ‘vibe’ you get too from that person.
9 times out of 10, your gut instinct is correct!
9 – Every professional you speak to uses the toilet the same way you do- don’t forget that when you’re speaking to them.
10 – If your child will only eat beans, let them have beans.
11 – If your child has a meltdown or a temper tantrum – it is not the end of the world and your child isn’t the only one to do this; try to remember this (I know it’s hard) and maybe when you’re comfortable enough to be a smart ass – take a bow for your audience.
12 – Good grades are good, however, they don’t ensure your child will grow up to be a decent human being.
Spend time with your child to instill kindness, understanding and all those wonderful attributes which help children grow into decent adults.
13 – Take videos. Snap pictures- ensure you appear in both.
14 – Don’t overly apologise for behaviours that your child cannot help. I still tell people “Ethan isn’t biased or racist, he will hit anyone” and if that person still insists that Ethan won’t hit them as they get closer to him and suddenly he kicks them, I do not apologise.
15 – All screeching isn’t bad. Sometimes it’s all our kiddies have, so get down with it and have a little scream too, it’s good for the soul.
16 – Cry. When you need to cry.
17 – Life isn’t fair. Accept it.
18 – Don’t start that daft debate over breast or bottle with a parent whose child is peg fed, for the love of all that is holy, fed is best- end of the debate.
19 – A special school is often the best thing you can offer your child. These schools cater to your child and their needs – it may not have been in your plan when you envisioned your child’s life but – plans change, get used to it.
20 – Doctors can get sh!t wrong. See point 9.
21- Life is what happens in between the plans we make for our life; try to enjoy it and when it is sh!t, it’s perfectly fine to complain, feel sorry for yourself… but get back up and if you can’t ask someone for a rope to pull you back up x
These are only a few small things I have learned and am still learning living life as Ethan’s mum. I hope some made you laugh and some made you think.