The first time we heard someone refer to my son as having special needs, it hit us like a train. I didn’t see it at first, although I was jumping through all kinds of hoops to keep him content. I was “on” all the time. I parented him and took care of his needs. He was my first child, and I didn’t realize that certain things were not typical. He met all his milestones early or on time. His language concerned me a bit, but then he put those 2 words together just in time for the check-up, so I wasn’t worried.
He was very sensitive to noises, but the pediatrician told me he would grow out of it. Lots of kids and people don’t like loud noises. In fact, I hated loud noises as a kid, too. My son was also a very picky eater, but once again, I thought of a lot of kids who were picky eaters. At times, he had so much energy, it was hard to calm him down.
I had a few people talk to me about occupational therapy and how much their child liked it and benefited from it. I would think to myself, “Are they suggesting we need this, or am I reading too much into what they are saying?” I would also hear how I never took a break. I never got to sit down. I thought, “Of course not. Parenting is hard, especially when you want to be a good parent. All kids keep their parent’s busy, right?”
I would always buffer my son from other’s comments who just didn’t understand him. I knew my little boy had a heart of gold and was so smart, yet not everyone got to see the person I knew he was. That was hard.
When he was 2-years-old, I did call an occupational therapist office and for various reasons, the lady and I went over a checklist of behaviors over the phone, instead of me actually going down there. From our conversation, he didn’t fit the need to be evaluated. Of course, I wondered if I represented him correctly. Was I one of those parents who was in denial? I didn’t want to be in denial. I knew he could be hard to handle at times, but he was a boy. Boys were difficult, right?
One afternoon, my 2 children and I went to a firehouse tour with our playgroup. My son was fine while we were inside, but once we got next to the fire trucks, he got very upset, was yelling and wouldn’t take his hands off his ears. The sirens were not on, and the firefighters and I assured my son that they would not turn them on. There was nothing that anyone could say to get him to stop crying or to believe us that it was quiet. My daughter was happy to be playing on the truck with the other kids, but I had to get her down and take them both inside.
At the time, I was feeling a mix of emotions. My son loved trucks, and we had been looking forward to this for so long. I wanted him to enjoy it, so there was a part of me that felt disappointed that he was so upset. I also looked around and saw my daughter and all the other kids having fun as they played on the truck. My son couldn’t do that.
Some of the other parents were looking at me funny, too. That didn’t help. Was he really going to grow out of this, like the pediatrician said? As we drove home, we focused on the positives — about how great the firehouse was and how brave he was to go by the truck. Inside, I was a wreck. Could he be autistic? Could he have sensory issues? Is it something else? Am I overreacting? What does this mean for him?
A few weeks later, we went to a festival downtown. Everything was great until a group of motorcycles passed us, and my son flipped out. He cried, shook with fear and covered his ears. We went back to the car, while he held his ears the entire time.
As we walked through the crowds, I looked around and saw 2 things. No one else had their ears covered. Not one person. The other thing I saw was how people looked at my son. They did that triple glance, as if they were trying to figure out what was wrong with him. That was rough and that was when it sank in that something wasn’t right.
He wouldn’t just grow out of this.
I held my son and told him we were leaving, and everything would be okay. I took a deep breath, held my head high and stared right back into the eyes of the people who were staring at my son as if he was a freak. Their audacity and lack of compassion made me angry and sad. I wasn’t going to let those people get to my son or me, but I also thought about my son’s future. Was this something he would have to deal with all his life? I thought of my sweet, loving, smart boy and wondered if the world would ever know him.
In private, at home, I cried my eyes out. I tried to explain to my husband what happened. There is no way to explain the hurt. It wasn’t just the people. It was facing the reality that something wasn’t right with our son. Not knowing for sure what was going on, I didn’t know what he would face in his life or have to overcome. I cried for him and the person I knew him to be. I cried because I wasn’t sure if some disorder was going to take my son away. I cried for the unknown, and my heart broke more than I thought possible.
to be continued next Saturday…
This is part I of III of an original World Moms Blog post by Maggie Ellison. Maggie Ellison can be found crafting at home or playing at the beach with her children in the low country of South Carolina, USA.
Photo credit to http://media.photobucket.com/image/too%20loud/mbowman7/Misc%20Family%20and%20Friends/TrainstooLoud.jpg?o=275. This picture has been cropped within the terms of photobucket.
Maggie,
I know this was really difficult for you to write about. You are so brave and wrote a wonderful piece. I hope you will find, too, that you are not alone among WMB writers, Kirsten and Amy, who also have children with special needs/special conditions.
I’m looking forward to parts II & III!
Veronica Samuels
Maggie,
I know this was really difficult for you to write about. You are so brave and wrote a wonderful piece. I hope you will find, too, that you are not alone among WMB writers, Kirsten and Amy, who also have children with special needs/special conditions.
I’m looking forward to parts II & III!
Veronica Samuels
That was very a touching post and like Veronica I’m very much looking forward to parts II and III.
Thank you for sharing as I can imagine it was very emotional to put down on paper.
Thank you so much for sharing your story. I really do know how hard it is, both to experience and talk about. Like Veronica said, you are not alone. You are a great Mom and so, so brave.
Thank you so much for sharing your story. I really do know how hard it is, both to experience and talk about. Like Veronica said, you are not alone. You are a great Mom and so, so brave.
Thank you so much!! Your support is really wonderful. It was healing, to look back and put our journey to where we are now, into words. Sometimes, the day-to-day can be so hard and you can have such great moments, followed by such hard ones. Looking back at everything we’ve been through, let me see our progression from just accepting and digesting what was happening to incorporating it into our lives. This became “our story,” although I didn’t see it unfolding as it was happening. It felt good to share it, but also made me a little uneasy. After reading your thoughts, I feel much more at ease. Thank you!
Beautifully written. Looking forward to reading more.
Beautifully written. Looking forward to reading more.
You brought tears to my eyes, because you just described what I went through with Jonathan. He has a lot of sensory issues, with sounds being one of the major ones. Light is another, he can’t step outside, even on cloudy days unless he has his ‘shades’. I look forward to reading the rest of your story. Writing (and reading!) can be so cathartic! Thanks for sharing.
Thank you for sharing your story. I am looking forward to reading the remainder. I hope you find some peace in your writing.
Thank you for sharing your story. I am looking forward to reading the remainder. I hope you find some peace in your writing.
Thank you for sharing the beginning of your story Maggie. I can’t wait to read the next segment!
Maggie, you had me in tears, and I am speechless – no comment really feels right. Thank you so much for sharing and I am looking forward to reading more.
Maggie, you had me in tears, and I am speechless – no comment really feels right. Thank you so much for sharing and I am looking forward to reading more.
This was wonderful to read! You put us right in the mind of a mother who discovers their child has SID. My child has it and this is what I went through as well-all the questioning, doubt, fear. Thank you for putting into words my thoughts. You are so brave and love your children so much. It is so apparent.
Wow – overwhelmed with all your kindness. Thank you so much! When I starting writing, I knew it would be about this, but I didn’t know how much I would get out of it for myself or that I would write enough for a 3 part piece. It’s really made our experiences with this more cohesive and less isolating. As much I don’t want anyone else to have to deal with the same issue, I am glad that those who have had to travel this road, also know they aren’t alone. There is something that gets to me when I read what another person writes, but it was my words or my experiences, exactly. For anyone who has not gone through something like this, then it is my hope to bring to them a greater understanding of what it is like. There’s a Plato quote that says, “Be kind for everyone you meet is fighting a great battle.” I really think of this quote often and remind myself of it when I come across someone “unpleasant.” I just never know what they are dealing with and I would want the benefit of the doubt on my toughest days.
Wow – overwhelmed with all your kindness. Thank you so much! When I starting writing, I knew it would be about this, but I didn’t know how much I would get out of it for myself or that I would write enough for a 3 part piece. It’s really made our experiences with this more cohesive and less isolating. As much I don’t want anyone else to have to deal with the same issue, I am glad that those who have had to travel this road, also know they aren’t alone. There is something that gets to me when I read what another person writes, but it was my words or my experiences, exactly. For anyone who has not gone through something like this, then it is my hope to bring to them a greater understanding of what it is like. There’s a Plato quote that says, “Be kind for everyone you meet is fighting a great battle.” I really think of this quote often and remind myself of it when I come across someone “unpleasant.” I just never know what they are dealing with and I would want the benefit of the doubt on my toughest days.
I got chills reading your article. Thank you for sharing. I know just what you mean when you wrote how protective you are of your son. My husband calls me the ultimate mother bear. My babes are the sun and the moon to me! I look forward to reading the rest of your article.