Surviving the journey

Okay, mums and dads of special needs children I would like to remind you of a few crucial pointers as you embark on your journey into the unknown. As a fellow traveller this trip can take you to places you’d never imagined you could or would ever go. Each day as you wake up, you’ll need to be prepared for anything and when I say anything I mean it!

As a mum of three most adorable and super special kids, I have had to climb a few mountains over the years and would like to share some of the tips that have enabled me to keep climbing.

* TIP NUMBER ONE – BUDDY-UP

You do not have to make this journey alone. I strongly advise that you pair up with a fellow traveller taking the same rocky road. I have a travel buddy heading on a similar route. We share the highs when our kids manage a remarkable feat that to a ‘perfectly normal’ (PN) person is ordinary. We share the lows that break our hearts and share the mental gaffa tape that helps stick us back together to continue on our way.

Ragdoll Mumma Zoe and I, laugh when we shouldn’t laugh. We plan and plot major escapades. We swear LOTS!!! It’s what we do to keep each other going. She is my travel buddy on this unwanted journey and some days she’ll pull me back from a trip to misery lane. We both have our amazing hubbies that came along for the ride too. We live on opposite sides of the country and our common thread is our “ragdoll” kids. We often comment that our kids could be twins and their stories are so similar. When things go wrong we can call each other and our conversations have lasted to the early hours of the morning.

If you have just started on your journey, I can’t stress how important it is to find a friend who gets it. Somewhere out there, there will be another parent just like you. You need to find them and support them and in return you’ll have that support from someone else who actually gets what you’re going through. Just a simple message to ask “are you okay?” or even sharing how tough it really is, can be like getting a free upgrade to business class for a weary traveller!

* TIP NUMBER TWO – LEARN A NEW LANGUAGE – EEG, ECG, MRI, CT scan, ICU, OT, IV, LOC, meds, BD nocte, mane, o2 stats, sao2, TPR, Resps, Dx, CNS, BSL, WTF?

I remember backpacking in Europe as a young traveller and hitching a ride with a truckie. I didn’t understand a word he was saying and I just smiled and nodded politely as we sped along the Autobahn. Yes I was young and foolish and would not encourage anyone to hitch rides with strangers. Nor should we let medical professionals cruise along without questioning exactly what their plan is for our kids. Learn the lingo and then you’ll be in a better position to ask questions and not be bamboozled and scared about what’s going on. Don’t be afraid to say you’re a foreigner and didn’t understand and ask them to explain again. Knowledge is power and we are there for our kids.

* TIP NUMBER THREE – TAKE LOADS OF NOT-SO-HAPPY SNAP SHOTS

I know this sounds really wrong but you need to record and document as much as you possibly can to share with your child’s medical professionals. It’s a stark part of this journey, but a video of a seizure can allow your doctor to see exactly what’s been happening. Also a journal that includes anything you might think noteworthy with dates and times can provide valuable information and help your doctor give your child the best possible treatment. Notes allow a parent also not to forget anything important especially during a consult.

* TIP NUMBER FOUR – REST DAYS

Yes, I know there are never ending medical appointments and therapy sessions. There are school morning runs and afternoon pick-ups, household chores, there’s tutoring and homework, sports training and music lessons. Being a PN parent is exhausting and being a parent of a child with special needs is even more exhaustipating! It’s like being on some crazy Contiki Tour that’s travelling to 50 countries in 50 days, but unlike those whacky fun loving tourists our journey doesn’t stop. It keeps going and everyday we’re not sure how far or long the journey will be with our child. We all need to stop occasionally and rest. Whether it’s a professional service, family or friends, don’t be afraid to ask or accept some respite. We all need rest days. A reminder too, to keep in touch with family and friends, as sometimes we can be consumed by our child’s medical condition.

*TIP NUMBER FIVE – FIRST AID

If you haven’t already, please complete at least a basic first aid course and make sure you complete a refresher course every few years. When we started our journey, my son had stopped breathing; he was blue and cold to touch during his first seizure. I honestly didn’t know what to do and I was in shock. I remember grabbing his lifeless body and heading for the shower to try and warm him up. (Yes, I know that’s not the correct first aid.) It was my worst nightmare not being able to help my son. Since then I’ve completed a LOT of training. Please make the time; it may save a life one day.

Well this is just the start of the journey list and we’d love it, if you too shared your tips on how to survive the journey. Please share your comments with us.

Take care and may the road never be too bumpy, Ragdoll Mumma Kelly x

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