I have sometimes felt that bringing up an Asperger's child is like driving around the Somerset countryside without a road map; I am strapped into the driver's seat, but have no one there to guide me on my journey.
A neurotic, type-A New Yorker, I am used to always being in control. I'm so bossy that I even tell my dentist and gynecologist what to do during routine checkups. It is not for no reason that my son's wry nickname for me is "The Fuhrer." I found it particularly difficult, therefore, to adapt to the role of special needs parent. For the first time in my life, I felt utterly at sea.
No one holds your hand when you are a special needs parent. No one leads you through the tangled web of diagnoses, treatment plans, nutritional input and educational advice. No one holds your hand, period. As the parent of a young child with behavioral challenges, sensory integration dysfunction and speech and language issues, you will very likely find doors slamming in your face; school options disappear, friendships falter and your marriage may start to wobble.
You have reached the special needs crossroads. Turn one way, and you can follow the path of least resistance -- denial and avoidance. Choose the other path and become a crusader. If your child's best interests are really at heart, you will choose the latter route.
How can you, as a special needs crusader, best navigate the murky waters of uncertainty that lie ahead? Here are a few tips:
Make Sure That Your Partner Is Not In Denial
As parents, you must maintain a united front. Many parents find autism and other "invisible disabilities" hard to discuss and to accept. Denial will get you nowhere. Drop any supercilious attitude or discomfort that you may feel about special needs schools. I am in absolutely no rush to mainstream my son; he has his whole future ahead of him to enjoy the "real world" -- these are the crucial early years where as much careful therapeutic input as possible can really make a difference. Educate your in-laws, your siblings and other family members who may very well be commenting under their breathe about your "badly behaved" child as well as questioning your parenting skills. Send them books and videos about autism or dyspraxia if you find talking about these issues challenging. Above all, your partner MUST be on board. This is a lonely journey that is best travelled in pairs. Special needs mothers need a lot of emotional support.
Find A Professional Mentor
A special needs parent is not only a parent; he or she is also a case manager. Overseeing the treatment and progress of your child is a more than full-time job. You will need to seek and assess therapies, battle for educational funding and become your child's passionate advocate. Find a professional who understands your child's needs and "adopt" them to be your unofficial mentor, someone who can recommend other specialists and give valuable guidance and input. Professor Peter Hill, our incredible pediatric psychiatrist, and Jessica Lough, a highly skilled HANDLE therapist (an astonishing method of neurological rehabilitation) played this role for us. Both, during different chapters of my son's early years, were pivotal forces who helped guide and support us. I will be forever grateful to them.
Question The Medical Community
Doctors are not always right. My son has been misdiagnosed (or come away without an obvious diagnosis) at least half a dozen times. When my son was an infant, I already had serious concerns about him; he would cry from morning until night, wouldn't feed properly and was not achieving significant milestones such as pointing and clapping. His language was delayed and he did not display any signs of symbolic play. I went at least half a dozen times with my concerns to our pediatrician at the Harvard University Health Services. After my third trip to see her she began to roll her eyes as I would enter the waiting room. I had been tagged as an overbearing and overanxious mother. I was told that my son was fine but that perhaps I needed treatment. I was subsequently referred to the practice's psychiatrist.
Never Say Never
I have never stopped believing in my remarkable now-15-year-old son. I could always see a spark of raw intelligence and thoughtfulness in him, even when head teachers were only half politely informing us that we should start looking for another school. Now he is attaining A's and A*'s on his GCSE modules, was just asked to be a school Prefect and most importantly is happy, social and comfortable in his skin. He is still a work in progress -- but aren't we all? Don't give up on your child. You must stay pragmatic, yet aim high.
I have gotten used to having no road map on this journey of mine. We have our good days and our bad days, like all families, but our ups and downs are more intense. My parent-crusader pay check is admittedly small in cash terms, but I am rich in parental pride and personal satisfaction. And the journey continues...