"The Special Needs Parent"
This week Loren Faingaa shares her families journey on raising their daughter Georgia. I first met Loren back when we were living in Canberra and our husband's were working together playing rugby..over the years I have often found myself emphasising with her struggles but also sharing in delight as their little girl has grown and progressed into the determined spirit that she is today! Loren offer's a fresh perspective on raising a child with additional needs and writes beautifully (that last paragraph hit me hard!)...Thank you Loren..keep reading below:
When I was asked by Stacey to contribute a blog post for Keanu’s Story, I realized it has been a while since I have written something myself. The obvious reasons being a recent international move to France from Ireland, and the fast approaching arrival of our third baby due in mid September.
But things are also going well. Really well. And as a special needs parent, when things are going ‘well’, you learn to savor those periods. I like to call them ‘sweet spots.’ Periods where the small normalcies of life feel like just that: normal. Most if not all special needs parents would agree with me, in this role you will inevitably go through periods where normality can at times feel like it has slipped away from beneath you. Periods where your child may be going through a challenging phase behaviorally, and/or require a significant amount of medical attention or specialized therapy, and your life can very much feel like it’s consumed by your child’s needs. physiotherapy, occupational therapy, speech therapy and countless medical appointments were crucial, but extremely taxing mentally and emotionally.
I put a lot of pressure on myself to do everything I possibly could to aid her development, but it wasn’t easy and I very much see that first period of her life as one of the hardest of mine. But Georgia is now making significant progress and we feel extremely fortunate that as she is getting older, the intensiveness of her therapy needs is easing. I think its fair to say this is in part due to her own willingness to learn and make progress, but also because of how hard we worked with her early on.
Georgia is making great improvements with her speech; one of her biggest early challenges, and is now talking in 3 and 4 word phrases and singing along to songs constantly. She still has lots of articulation errors that we will keep working on with her new speech therapist in France, but hey, 3 years ago we were told she might not ever talk. She will also be starting at a bilingual mainstream school this month (compulsory schooling starts from age 3 in France), which is a huge deal for me as her mum. I still have the meeting with the geneticist a few weeks after she was diagnosed as a baby firmly imprinted in my mind: “mainstream schooling may not be possible”….
I’d be naïve to think that it’s going to be an easy transition for her. And I also recognize that for many families with special needs children, a specialized school is both the best choice for their family and in their child’s best interests. But by making this point I’m hoping to emphasize the importance of never pigeon holing your child because of their diagnosis. Don’t ever catch yourself thinking “oh she/he will never be able to do that”. Your child will continuously surprise you. They will beat the odds and have you smiling quietly to yourself countless times over the years as you think “f** you adversity, see what she just did.”
So we sit in this sweet spot for now. Georgia still has challenges, but nothing compared to the intensiveness of her therapy needs in her first years of life.
But I guess that’s why I’ve never really liked the term ‘special needs parent’. It makes me cringe a lot of the time because its an expression that tends to throw all parents of children with a diagnosis into the same basket, when it’s in fact such a unique and ever changing role for each of us. Our children all have different levels of therapy needs, medical issues, areas that will require more attention than others at certain times, and this will impact on their families in their own distinctive way. There are some truly superhuman parents out there dealing with extremely complex needs of their child/children, and for them the term ‘special needs parent’ will never truly do justice to the extraordinary role they undertake everyday.
It’s a term that also doesn’t do justice to the complex role we play in the lives of our children:
We must be their advocate in a fast paced society where it’s easy to be left behind or forgotten. Its up to you to make noise in order to get the help your child needs and deserves. Unfortunately, no one comes knocking on your door to offer your child support. You must be assertive, pushy and initiate it and then never stop.
We quickly learn to become the administrators of their medical files stacked with forms and endless paperwork, and you will guard this with your life because diagnostic evidence on paper equals access to funding and services your child needs and is entitled too.
We are the experts on our child’s diagnosis. We know better than any specialist doctor in the field what is best for our child, and this often means we will push back at medical opinion because our gut tells us its not the best thing for our child.
We are the best therapy they will ever have. The formal sessions are important yes, not to mention expensive, but rather useless if you don’t take responsibility to put the methods into practice at home.
We are expert researchers in their field. We spend countless nights staying up late researching anything closely relating to our child’s condition, just so we can sleep at night knowing we are doing everything we possibly can to help them.
And on top of all that we still have to just be their mum. The mum they cling to during those scary medical appointments whilst we try to reassure them “its ok mummy is here”. The mum who is also trying to hold back her own tears during these appointments, as they hold your terrified child down on the examination bed to poke and prod or draw blood. The mum who yells when they push you too far, smothers them in kisses and hugs them tightly whenever we get the chance, and cherishes all the small special moments and milestones just like any other parent does.
But the term ‘special needs parent’ is also an expression that instantly creates a very special community of people, and for that I have to give it some credit. We become part of an exclusive club not many get the privilege of ever gaining access to. When you first step into this club it will seem like a very dim and dark place. Your child’s initial diagnosis will rock you. When you hear those words, it’s like a punch in the guts. It empties you. You feel emotionally winded. You know that nothing is going to be the same from that point forward and you will cry your eyes out. You will look yourself in the mirror, terrified, as you ask yourself how the hell are you capable of raising this child and navigating this new world.
But after you’ve had a good cry, dusted yourself off, you’ll go back to that same mirror and look at yourself and go “ok, let’s go for it.’”
And that’s probably the key turning point. Don’t get me wrong its still a slow burn. But overtime, you realize that this club is the only place where you will ever learn to become the most patient, resilient and empathetic kind of parent there is. This club will open your eyes to the beauty of being ‘different’, and you will come to appreciate the very best thing about your child is the fact they are so unlike you, in the very best kind of way.