The first few years are a nightmare..you’re scrabbling, reaching, trying to find answers, researching, filling in endless paperwork, trying to find a good team to support your child. Sleepless nights, endless questions, insecurity, doubt and fear. Then you slowly get it sorted. You find the right therapists, doctors, daycare. You find support networks, and answers. You stop having to struggle and advocate all the time. You stop fearing so much for your child’s very life. And you feel like you have finally got it worked out. To some extent at least. You know challenges are yet to come, but they start to feel far in the future.
Then life happens. Your child grows a little older, they outgrow “early intervention”, it is time to start school, leave behind the secure cocoon you have woven for them. Old challenges are overcome, and new ones have arisen. And you find yourself on quicksand once again. All those wonderful supports you had, slipping from your reach. All that hard earned knowledge, now outdated and needing a bit of an upgrade. Time to start over. Endless reams of paperwork, again. Interviewing potential schools. Moving house. Trying to find new therapists. New doctors. New teachers to support and guide your child. New interventions to assist with emerging issues. And, momentarily, fear sets in. Echoes of that early time of fear and uncertainty come to haunt you in the early hours before dawn.
You find yourself afraid, feeling inadequate, and unsure whether you have the emotional and physical reserves to do this..again. And then you pause..and breathe..and realise that despite the fear, the tiredness, and the (yes) resentment you sometimes feel at having to do all of this..that you are so much better equipped than you were the first time around. Now you have the guidance of others to call on, from having found support networks. Now you have confidence to back you up..you have done this before, with far less knowledge at hand, and when you were far more depleted. You can do this.
And then, the realisation of how far both you and your child have come in such a relatively short time dawns on you. It is, really, a miracle of sorts. It doesn’t dismiss the effort or exhaustion of having to once more educate a new team about your child’s strengths and weaknesses. But it does give you a confidence you didn’t have before, A tentative confidence to be sure, a flickering flame, not a blazing fire..but far more confidence than you had five years ago, when you battled the system to be heard. Now you know that you have a voice, and that you will not be defeated. Now you know that you can find your way through the maze.
To all parents going through change, special needs or not, know that you have what it takes. A parent’s love can overcome many obstacles.
Today Sophie had her last session with her occupational therapist, Robyn, who she has been seeing for three years..since she was two years old. And last night I shed a few tears as I thought of this chapter of Sophie’s life being over. And as I watched her carefully and painstakingly writing a thank you card for Robyn, and painting a “dolls’ house” to give to Robyn as a gift. Because, back then, I never could have imagined that Sophie would be able to do this..
Next month Sophie starts prep. Far from where we now live. Entailing new teachers, therapists and supports. And I have been overwhelmed. And anxious.
But on reflection, I see the fears are in me, not in her. I know now that my beautiful, brave, joyful and hardworking little girl will continue to amaze and surprise me. And that I must NEVER underestimate her gifts and her potential. Sophie is an amazing teacher…reminding me each and everyday to never underestimate anyone, and to never give up. And so I step out and step up, knowing that if my tiny little angel of a girl can face the world with courage, I can do no less. Onwards we go 🙂