Today is Star Wars Days! A big deal for my 2 boys who are Star Wars freaks. I sent my “regular” 10 year old off this morning for a 3D 2N stay at the Outward Bound School. My “special” 12 year old is in Term 3, (completed his Checkpoint exams last week and is gearing for Y6 graduation ceremony). He was repeating to his younger brother all the dos and donts. I know that he got all my instructions even if his "regular" brother decides to forget! Finally he piped out, “Can I go to OBS too?”.
I pray he too gets the chance like his "regular" brother. Advocating for him to go to school camp will be another challenge but, hey, hasn’t every step of the way been since his diagnosis at almost 5? In my books he will go someday but with a lot of resistance and he will never know how much advocating goes on behind the scenes, adjustment with teachers and contingency plans get put in place, just so that he gets a chance. Like most times, we are fighting adults not peers. Peers are accommodating but, adults, whether parents or teachers who have not been trained can be judgemental and scared when they hear of any disability.
Like most times, the work that goes in to ensure he has a chance would include the background preparation with therapists, the breaking down of every step, the social story, the selection of a roommate, preparation of adjustments that need to be made if the schedule is delayed and ensuring there is support to talk him through any small change to avoid a meltdown and encourage self regulation. Like any regular child you would say? All these steps help my "regular kids" as they go into any situation very well prepared and more confident than their peers. My "regular" kids benefit from all that because mummy is so used to breaking it all down and lays everything out thanks to the blessing their elder brother has brought.
My parenting journey has brought many souls to assist, desist, teach and keep me grounded for which I am immensely grateful - the occupational therapists, the speech therapists, the psychologists, the ABA therapists, the biomedical doctor, the physiotherapist, the Applied Movement Therapist,the Martial Arts therapist, the Floortime expert, the sound therapist, the hippo therapist, the music therapist, the brain wave therapist, the mummies to name a few. I empathise so quickly with other moms and kids as I know how much time, energy, patience and courage it takes. Cheering children on has become second nature and encouraging each one to push boundaries has become a part of my DNA. Trust me, they rise to the challenge when you believe in them. I expect the worse and pray for the best and most times I am pleasantly surprised.
I have a high functioning son on the autism spectrum whose problem today is attention deficit and semantic pragmatic disorder. I am so resilient to adapting to change that when everything goes according to clockwork, I get on a high. My reliance on faith, hope and prayer is so ingrained that it annoys my family and friends who don’t understand my journey. Actually very few will.
To all parents on a similar journey, trust that you have been blessed with the “special” child for a reason & for your self improvement too. Sometimes you feel alone and those closest to you may be the very people you are fighting. That is ok. They don’t see what you see but the Universe will. Just keep going and look for the right help. If you dont find it, keep going and changing till you do. Ultimately, it is just about giving the children wings to fly. Set realistic targets with the aid of professionals. Rome was not built and conquered in a day and Star Wars is now on Episode 8! May the Fourth always be with you!!!!