What you should know about Special Needs parents

Becoming a special needs parent has changed me. The flippant comments about raising a child with a disability sometimes makes my blood boil and at times I wish I could say how it really is.

What better way to tell you what you should know about special needs parenting;

You won’t know what it’s like to raise a special needs child unless you have walked in our shoes and even then, no two children are the same.

You will never understand watching your child laying in a hospital bed struggling for life; you will never understand wishing so much that it could be you instead of them.

You will never feel that overwhelming feeling of hope when they reach the tiniest milestone like holding their head or reaching out for you.

Special needs parents find an inner strength to take on the world and fight for everything for their child, even if it improves their child’s life by 1% they would take on a whole army to get it. From equipment, appointments, referrals, places at special school everything is a constant battle, but they will never give up. They are their child’s advocate and voice.

Never say to a parent of a special need child that you don’t know how they do it!

I have had this said to me so many times along with “special children are given to special people.”

My reply, I don’t have a choice! What is the other option; you would do anything for your child right?

I wouldn’t change her, I may wish I could take her challenges away but I would never not want her in my life.

Google is also our best friend and our worst enemy. The love/ hate relationship I have is on-going.

In the first year it was my worst enemy, I was in denial, I felt low, and I couldn’t accept how our lives were going to change. I would spend nights researching, not liking what I was reading so searching more in the hope I would read something that would give me a glimmer of hope.

This last year our relationship has been on better terms, I have learnt to only search when I really need too and not to ponder too much on what I find. Every child is different after all.

Special needs parents may look strong on the outside, but all, at some point have cried an ocean for their child.

The guilt of not being able to take away their child’s condition or asking why them? They would never let you see, and if they do they would wipe away their tears and carry on.

Sleep. Special needs parents don’t sleep. If they aren’t up searching the net for answers then they are giving meds, flushing tubes or battling with the sound of the feeding pumping alarming.

If, on the rare occasion their child is asleep then they are worrying that they are poorly as they never normally sleep.

You will find that special needs parents know more about their child’s condition than the doctors.

That’s because we are our child’s advocate and it is our full time job to know absolutely everything. I have often sat and explained to the professionals how my child’s condition affects them and have walked away questioning if our roles had reversed in that appointment.

We keep our network of friends tight, sometimes the friends we thought we had slowly disappear due to us not being as available as we once were or sometimes they just don’t know what to say.

I have a close set of friends that I can count on one hand that I know I can call when I need them but equally know to leave me be when I want to be alone. I also need to be around positive people, no glass half empty friends here but those that are full to the brim.

Our lives are constantly in the fast lane, there is always physiotherapy, appointments, feeding, tube changing, meds to give and that’s just our child with special needs child. Add into the mix our other children, our husband, running the house there is not much time to sit down and relax.

On the rare occasion we do, we feel guilty that we could be doing more for our child.

Lastly, special needs parents are normal people who enjoy doing normal things.

Our lives may be different to yours but our life is our normal and we are grateful we have one.