Feelings of pride and gulit.

Today was a big day for my baby girl. She learned to pull herself to a stand and how to applaud her efforts! Watching a baby clap for the first time always brings a smile to my face. I don’t know if it’s because I automatically start singing “If you’re happy and you know it clap your hands” or if it’s just that babies are so darn cute, especially when they learn something new.

As I watched the giant grin on my baby girl’s face, encouraging her to clap, I got this sudden feeling that I have yet another thing to work on as a mother. You see, my second born, who was diagnosed with autism last June, didn’t start to clap until he was 19 months. Our daughter is 10 months. At the time that my second born learned to clap, I knew it was later than typical – one of the many red flags that led to an early diagnosis. Today, as I watched my baby girl do something so seemingly easy for her, I couldn’t help but compare her to C. Immediate I was flooded with feelings of guilt. I know how important it is to treat our children as individuals, to help them develop their God given personalities and abilities. I know how dangerous it can be to compare our children and how it leads to the slippery slop of favoritism. I don’t want to be THAT parent, who values one child over another.

It was then that I began to realize that my comparison was causing a battle in my heart. On one side my heart was breaking for Mr. C and his daily challenges – even clapping was a struggle he once faced. I want so desperately to hold my baby boy and make life easier for him. I think back to all the times over the period of several months that I would take his two hands and clap them together, hoping and praying he would do it on his own – until he finally did.

On the other side I look at my baby girl who learned to clap on her own, with little instruction or manipulation from me. I’ve probably only clapped her hands together on a half a dozen occations. I see her effortlessly become confident in something that was so difficult for C. I am happy for H and ever so proud, but I also feel relief. Relief that with every milestone she reaches I can say with certainty that at THIS point she is typically developing. My relief brings guilt as I wonder if it means I am bad mother. Am I a bad mother for being so happy and relieved that daughter can do things so easily that my youngest son cannot?

I cannot help but wonder if my fear of my daughter showing signs of autism somehow means that I don’t love C enough, that somehow I want to change him. I know this fear comes from a heart that breaks for my son. I want so desperately for life to be easy for him. And if C were different, maybe he could tell me what he needs and I wouldn’t feel as helpless and useless as a mother.

A dear friend of mine, while trying to teach her little ones an important lesson, in turn actually taught ME the lesson. “You get what you get and you don’t get upset”. At this point in his life, Cayleb doesn’t seem to be upset in the least by his autism. He just goes through life working really hard to face and overcome his challenges; allowing his challenges to build character.

I am learning that a big challenge set before me as a mother, is to love my kids during their difficult moments, love them as they struggle through their challenges – that’s when showing my kids unconditional love is most important – AND when they learn to clap at no matter what age that happens.

Tough Days

There are days when raising a special needs child is harder than others. The constant screaming and crying that come from the frustration of not being able to express the simplest of things can be emotionally and physically exhausting. Only a handful of people who meet my son can even begin to sense what life with a two year old who battling autism must be like. Most people see the sweet innocent side of C. He is so happy and just loves life. You can’t help but see the joy in his eyes as he discovers new things, or is reintroduced to old things. I took the kids to the park a couple of weeks ago, and we’ll probably go again today as the weather is lovely, and the way C’s whole face and body lit up as I put him into the swing melted my heart. As much joy as he experienced in that swing, and equally strong frustration was soon to follow as it was time to get out of the swing. I held my baby boy as he cried and kicked and screamed for “MORE”. I felt like the worst mother in the world for having to end this blissful moment in time. Two minutes later as I pushed the stroller, homeward bound, he was content again, singing the ants go marching ‘HORRAH, HORRAH’. One of the biggest challenges I have been facing lately is to not compare my little C to other kids around him. This gets increasingly harder as I see kids less than half his age speaking so clearly and acting so ‘typically’. My heart breaks for my baby boy as I want so much for him, I want him to be able to accomplish so much. I think back to B at this age and remember what he was doing and saying and want so badly for C to be able to do the same things. I look to the future and know that C won’t be able to play soccer on a team or take independent swimming lessons at the same age B did. Our walks to the park will surely always involve a stroller, wagon or harness because he’d run off at the first opportunity otherwise. It is so easy to fall into the trap of negative thinking and on focusing everything C cannot do! A type of thinking that I could justify and get away with forever and I don’t think anyone could blame me. When I’ve had my moment of self pity, my moment of having my heart break for C, I look up, and focus on the good parts of our day, our life. Even the worst of days have good parts; the parts where C says a new word or discovers something new. 6 days ago, C said “Mommy”. Not “Mam ma” like he’s said for the past 6 moths, on and off, he said “MOMMY”. Then yesterday, he screamed “Mommy” and I came running. He was upset and wanted a hug. But no matter how much he continued to scream and kick and cry, I couldn’t help but smile because he called me by name! The world is right again and I know that my baby boy is living life to the fullest. He is working so hard to get his words and his hard work is paying off. C has just over 50 words now (and I’ve probably missed a few in my counting) and that number will continue to grow, no doubt. He’ll play soccer one day, on a team and we’ll walk to the park hand in hand. Those days will come, eventually. For now, I’m going to celebrate the small steps, that are ironically, HUGE!

Forever Labeled

Last June, a few short days after his 2nd birthday, C, my baby boy was diagnosed with autism. Even now, 8 months after receiving his diagnosis, I still choke up when I say it. It's not that C changed the day we received the news, actually he remained the exact same kid he always was and still is. It was the way I viewed him that changed. As much I tried to not label my son, for the longest time every time I would look at him the doctor's words echoed in my mind. I could hear her apologize and attempt to reassured me that she was here to help. I thought, ‘if you are here for me, why do I feel so alone?’ She asked me if I had any questions, but the questions I had have no answers.

When the door closed as the doctor left the room, the silence was overwhelming as if it mirrored the silence I would hear after asking C a question and receive no answer. I took a deep breath and walked out, remaining composed until I feel apart in the car on the way to my Mom's to pick up the boys. I was 38 weeks pregnant and already emotional but I somehow held it together as I repeated the word the doctor had labeled C with. ‘AUTISTIC’.

Life seemed to switch to slow motion and fast forward all at the same time, since that day last June. Speech therapy, behaviour therapy, nursery school, various consultants, phone calls, appointments, doctor's appointments, blood tests...each day blurred together. Waiting list after waiting list. A special diet. Vitamin B 12 shots. A newborn baby.

Most days I feel like I'm in a sail boat, in the middle of a storm at sea, all alone with no where to go. Some days are lonelier than others, and most days I also feel spent, exhausted, scared - surrounded by darkness in unknown waters. I watch other kids who are younger than C, speaking, saying so many new words each day. My heart hurts for C, broken that life will never be easy as he faces so many challenges. C can't tell me how he feels, so I'm left to guess as I sort through my own feelings, wondering what the future has in store for us.

I look at my baby boy, occasionally he looks back at me and our eyes will lock. C says a new word, makes progress, reaches a new milestone. His face lights up with pure joy, a joy most never experience over such seemingly small feats. I look at my boy and see his label, this word 'AUTISTIC'. This word begins to fade and is replaced with a new word. I know that no matter what happens today, tomorrow or in the distant future, the label C will forever wear is ‘LOVE.’

Not in this alone

I originally planned on blogging "Not in this alone" a couple of weeks ago. I was trying to do the entry on my iPhone when instead of going to the next box after the title, my blog was just posted. So I'm finally getting to it now....Here's what it would have said:

Today has been one of 'those' days. I'm over tired because H was up many times in the night. I got C to school late because as we were leaving H peed everywhere and then I had to chase C around the house to get him to put his coat on. At C's school I could only find a parking spot that was far away from the door, and of course it's bitter cold outside. C was upset about going to school. I couldn't help but sigh out of relief once C was in the care of his teacher and I could go home and enjoy a cup of joe (that coffee is more often wishful thinking than reality, as inevitably when I get home there's something else to do). As I went to leave the nursery school, there were a few people in front of me going through the double set of doors, obviously in a rush to leave. I waited no big deal. Then it was my turn to use the door when another lady came in the first door and just stood in my path, staring off into space. After what seemed like a few minutes, but was actually just a few seconds, she looked at me, smiled and apologized. "Sorry, I'm just having one of those days, I was up all night with the little one, I'm so tired".

I couldn't help but smile to myself on the way home. As tough as many of these days seem during these early years, I'm not in this alone; I'm not the only one having one of 'those' days. Suddenly I don't feel so small, so overwhelmed with what life puts in my path each day, suddenly I feel, well just, HUMAN.