Josie Santomauro's perspective on diagnosis, Autism Spectrum Disorders and early signs of Autism and Asperger's syndrome in Australia

I AM A WARRIOR, I AM A MOTHER

Michele Rolfe is a mom with first hand experience and opinions about raising a chld with special needs.

I realize it’s hard for people to understand what life is like when you have a special needs child. They see you doing a thousand things and give you credit for your strength and perseverance; but they don’t really know the depth of your struggles. There is a constant theme for hitting road blocks when dealing with the medical community and insurance companies. Cutting through all the red tape is no easy task and some days you’re left feeling completely overwhelmed, stressed out and down right depressed. It’s hard to express in word the dedication, determination and tolerance you have to find within yourself to help your child recover. And somehow still maintain your sanity and sunny disposition!

Well, not to long ago I was having one of those bad days. For whatever reason, I was in a really down mood. It could have been the e-mail explaining how yet another one of Alex’s ABA therapist “new school schedule” didn’t gel with our current therapy sessions. But more than likely it was receiving the estimated cost of biomedical treatment that is not covered by insurance. That shot a bullet through my heart and left me hyperventilating and speculating how we were going to come up with the money to cover it. It might have been the stupid paper cut I got when filling out another 33 pages of medical history for the umpteenth time. Although the snapshot in my mind of the little witch that rolled her eyes when Alex wouldn’t comply with the hearing test didn’t help either. What is she like 18 years old? How could she possibly understand the anxiety I was already feeling for sitting in the waiting room for 45 minutes watching Alex’s patience fly out the window as the seconds ticked away?

Possibly it was the diminutive paycheck I received this week due to hours missed when shuffling Alex to and from his semiannual Psychological testing. The bright side to those visits is confirmation the 25 hours a week of therapy is working and Alex is getting better. He scores higher and higher each time we go, and I find myself doing a victory dance in the hallway on our way out! Then again, my bad day could have been the result of an aching back from dragging my hysterical, fit throwing child out of the grocery store when they were out of his favorite cheese raviolis. Or it could be my humiliated ego from the disapproving looks thrown my way when the necklace he ripped off my neck went flying thru the air and spilled beads in a thousand different directions on the floor. Clean-up in isle 5! The last thing I needed at that moment was the unsolicited advice from a granny with a thick southern drawl who raised 10 kids and of course had all the answers.

My sadness could be attributed by the guilt I harbor for not having any time, let alone energy, to give my husband the love and attention he requires and most definitely deserves. Personally I believe he should be considered for Sainthood. What woman wouldn’t love a man who doesn’t complain about her cooking, does the dishes and vacuums every night? Michael not only puts up with my Jersey attitude and consistent venting, but he keeps me stocked with Riesling wine and chocolate! God I love him!

Perhaps my self-pity for placing my own needs on the back burner is the culprit. With a tightly filled calendar and sheer exhaustion always knocking at my door, I’ve finally given up trying to do anything about the reoccurring gray hair, expanding waistline or the notion of ever wearing high heels again. My comfy “mommy wardrobe” usually resembles a napkin with a teary snot-smear, spilled juice or a cheesy-finger rub somewhere on my outfit. My four year old lover bugger son considers it a badge of honor I should wear proudly!

Maybe, just maybe my head was so full of information, statistics, schedules, protocols, and the “to-do” list that I couldn’t possibly process anything else until I defragged my brain. No wonder I can’t get any sleep without self-medicating! Don’t get me wrong, not all days are like this. However, on this particular day with my bad attitude in high gear, feeling like I was banging my head against the wall, I had an epiphany of sorts. I had a vision of myself, my world and the crystal clear revelation that my challenges were not going to change. I’m sure I’m not the first mother for this light bulb to somehow switch on, but I bet very few of them ever talk about it. The reality is that this journey is emotionally, physically and spiritually taxing. It is also the most rewarding aspect of my life. This is the best way I can describe what I’m feeling. This is my metaphorical story:

I realized today that I am not in a football game. I thought I was. I thought I was the quarter back, you know the ‘most valuable player’ making decisions on whether to throw or run the ball, move left or fake right. I huddle up with my linemen, wide receivers and running backs; you know those players, up there in front of me on the field, helping me win the game. We make a plan, execute it and with teamwork we see it through, past the goal line, score!

Nope…I was wrong. This isn’t a team sport. I see myself; I’m in a boxing ring. It’s just me, by myself, no one else.

I’m punching away, shuffling my feet, ducking and pivoting…but there’s no bell ringing. There’s no corner stool, no Gatorade, no spit pail, no towel. I can occasionally hear people yelling from the corner, “stay off the ropes”, “keep your arms up”, and “go for the body”. Their words are encouraging, I need to hear them, and they help keep me going. But, my eyes are swelled so I can’t see my opponent. My bones are busted so every blow I take is painful. If I manage to land a hit, it’s seems weak against this monster in the ring with me. In my mind I doubt my strength and question my own strategy. I can’t get any air through my nose, it’s hard to breathe and I’m quickly losing energy. I’m wondering, where’s the damn bell, when do I get a break? Then I realize it’s not coming. There is no bell, there is no time to sit, no time to rest, and no one is going to wipe my brow, plug my bleeding nose or sear my oozing cheekbone.

I didn’t sign-up for this, not that I can remember anyway, it all seems so fuzzy, came at me so fast. But I know the clock is ticking, I’m not only fighting this monster, but I’m fighting against time. I have to win this fight with a knock-out; a win by the judges’ decision won’t get me the purse. In fact, the fight won’t end until there’s a knock-out. I have more at stake than my adversary; my child’s very existence depends on it. The quality of his life, the ability for him to reach his full potential is in my hands, in my boxing gloves. So I have to reach far down inside myself, real deep, and pull every bit of life I have up to the surface. I have to make whatever I have inside myself matter. I trip over my feet, stumble and catch myself. My legs are trembling now and I fear vertigo is setting in. Don’t fall down Michele, push harder. I pray for God to direct my punches. I pray for Him to give me the strength to endure the intense pain I’m feeling and the time to see this fight to the end.

Ha, the end; is there one? Well, if I manage to rip the belly out of this beast and the chime of the bell finally rings, no one will be there with a big gold belt to put around my waist. I won’t get some great athletic sponsor that will pay me handsomely, I won’t make the cover of Sports Illustrated and no one will remember my name.

No, my prize is much more precious! You can’t give it a dollar value. It will not be recognized with a trophy or honored with a star on Hollywood boulevard. It’s a quiet satisfaction. It’s the joy of hearing my child speak for the first time in 3 years; to hear him say the words ‘I love you’ and understand the meaning. The ability to have a two-way conversation, taken for granted by others, is priceless for us. It’s the happy thump my heart beats when Alex eats solid food. It’s the elation of no longer seeing him curl up in a ball on the floor because he is afraid of the noise surrounding him. It’s the smile I wear on my face when I see him playing with another child, engaging, interacting, and having fun.

My paycheck is the happy tear I shed when Alex’s frustration for not being able to peddle a bicycle gives way to happily taking his bear-bear for a ride on his Spiderman big wheel. It’s the laughter Mike and I cannot contain when Alex comes out of his room with sunglasses and a cowboy hat on; a Star Wars towel wrapped around his shoulders and he’s using a plastic pirate sword as a gun to “shoot aliens”….imagination at it best! My reward is the pride I feel for Alex, for it is he who battles through all the hours of therapy, the multitude of tests, and hard work that pushes him to his limits. The eternal faith I have in my son’s ability to learn, grow, excel, exceed, prosper and live the life that was meant to be his. It’s something that only a mother can feel; it’s the internal peace of knowing that he will be okay.

Giving up is NOT an option. So here I am…breathing heavy, battered, bruised and tired…giving it all I’ve got. Seems tough? It is. It’s emotional beyond belief. Small milestones are huge victories in my world. But, the reward far outweighs the battle. I am a warrior, I am a mother; I would fight this war over and over again without reservation. I thank God for my son. I thank God for Autism. Hard to believe I would be thankful for it, but I am. It has forced me to be a better mother.

I have an intimate relationship, a bond with Alex that fills my heart with unconditional love and provides purpose in my life. I am willing to admit my drive is tenacious, my focus uncanny. I find myself becoming an advocate, trying to provide hope to other mothers. I thank God for my family and friends, shouting from those corner ropes offering prayers, support and praises. I thank God for the “super woman panties” that I put on every morning; they’re my secret hidden armor. And of course, for the duct tape that holds them up!