Going into the hospital at 5 a.m. on October 9th, 2007 for induction, I was already on pins and needles. One doctor failed to administer proper testing for possible disabling issues my child might have. By the time I was able to locate another gynecologist, with emphasis on high risk pregnancies, some tests could not be performed until after the baby's birth. There was also a funneling issue my new doctor and specialist were concerned with. All that worrying and I delivered a baby boy who had all fingers and toes, no deformities to the naked eye, and cried after his pat on the tooshie. Three mandatory days in the hospital, I changed his name from Matteo to Christain as he latched onto the boob perfectly. Houston, we have lift off! Spirits high and feeling good, my son began his hearing tests and pricks of the foot. My new life with my son had begun. Little did I know my worry would prove relevant in the days to follow.
Houston, we now have a problem. Chris began to run extremely high fevers and failed his hearing tests. Doctors kept adding more mandatory days to figure out the problem. One problem I resolved, but still questioned why. When Chris laid with me, skin to skin, he never ran a fever. Once the nurses came in to do their check, they swaddled him, and poof the fever would be back. According to the doctors, my son "must be temperature sensitive", meaning he gets hot easily. I thought it strange, but then again, what did I know? I wasn't a doctor. The hearing test was always done in the room and noises were constantly apparent. Between the beeps of the monitors, people coming and going, and strange hands groping him, I finally made the suggestion to do it in a quiet room. If he was "temperature sensitive", maybe he was for hearing as well. Wouldn't you know it, he finally passed the test!
Home had never felt and smelled so good. Unfortunately, that feeling would not last very long. Many sleepless nights and days came and went. The fevers began again, too. Back to the hospital we went. After spinal taps, blood tests, and finally standing outside because I couldn't stand one more test being done to him, they admitted Chris to the pediatric unit. Seven days later, a culture finally came back establishing a UTI. Wait, what? How is that even possible? The culture had shown he must've had it since birth. Antibiotics pumped into his IV and again home-bound we went.
As the years passed, I realized my son was different. Sleepless nights for my son was regular. Putting on clothes was like hell on earth because the tags or texture of the clothing bothered him. He was slow to walk, talk, run, and eat by himself. Slow is actually an understatement. He was nonverbal until age 5. Mostly I heard grunts, screams, and the occasional jumbled words with no rhyme or reason to the pattern. Hair cuts were a no-go unless I did it while he slept. Since the buzzer would wake him, scissors were used; using scissors had my son looking as if he was affiliated with the Amish community. Tics seem to take control of his life and ensuring he stayed warm during winter months, was almost near to impossible. I swear my neighbors thought I beat him with all the screaming he did. He didn't participate like other children and smiling only happened if I tickled his face. He never mimicked my facial expressions, didn't play peek-a-boo, and didn't seem to understand his environment along with his role in it. Chris was so "out there", many doctors felt he was too young for diagnosing let alone treatment. He was different or as I used to say, unique.
We tried school, socializing with other children, trips out in the community but he always seemed out of place. Other children would ask, "what's wrong with him", and even some parents, too. It was as if my son was a skunk and everyone knew if they got close, he would spray them. At first, Chris didn't seem to mind his skunk-like appeal. That finally came to a head one day at a water park. A young girl came up to me and asked why Chris talked and walked funny. He must've overheard her asking me because later he questioned, "ma, why am I weird?". Now, that was not a word he should've known. Like most special children, he was paying attention to others' words even if he didn't show he was.
Trying to break down the phrase, Special Need, to my son was no easy task. I didn't know what he would understand or pick up on. I also had to be weary of the associations he might make, of his own accord, regardless of my words. It was at that time, I thought of something for him to repeat. I began with questions for him to nod his head to:
1.) Are you kind?
2.) Are you loved? Who loves you?
3.) Are you handsome?
4.) Are you smart?
5.) Are you special to me?
As he got older and able to talk better, I made him repeat this saying, "I am kind and loved. I am handsome and smart. I am special to mommy and seem different to others. That's o.k. because I'm loved by many who loves my special ways."
Nowadays, Chris has gotten to the point where he asks me point blank, "do they not like me because I'm different?". He has even had many voices-of criticisms from watching other children and comparing himself to them. Now, when he seems upset by being, "different", I repeat this to him, "you are special. God made you that way for others to have more understanding and better patience. Since you are special, you have more needs than another child. This doesn't make you better or worse. It just means there are more people to help guide, care, and understand you". My personal favorite phrase, when others have been mean to him is, "Chris, there is no normal. Everyone's different. Some of us just show it more than another person". He smiles ear to ear each time I say that.
Explaining the words: special need, special education, Autism, disability, weird, different, abnormal comes over time. There has not been on quick fix or immaculate phrase to ease my son's troubled mind and soul. I've even made comparisons with him and others, explaining how his strength is this...and their strength maybe different but we all have awesome abilities. Not one is better than the other. We all help contribute something to the world. Even him being "special" has its benefits. I, now, get to tell him that if it weren't for him being unique, I would've never written books to help other children. I believe if we stay positive and show them their strengths, instead of focusing on their weaknesses, explaining the phrase, "special need" will come naturally. Of course, we can't control what others say, but we can give our children the tools for handling idiocy. If you asked my son today, "what's wrong with you" or "why are you so weird", he would probably say, "last I checked, you aren't perfect, either" and walk away. We would then high five, hug of course, and eat some ice cream.