I see you at the park, sitting at the picnic table holding your child on your lap. I see you watching your other children running and playing with other kids on the playground. You wish the child on your lap could run and play with the other neighborhood kids. Heck, you wish the other neighborhood kids would come up and acknowledge your child sitting on the sidelines. You wish your body could handle the demands of holding your child on the swing, carrying them up to the slides and holding them on their way down for more than ten minutes. I see you holding back the tears wishing things were “normal” for your family. I see you, because I am you.
Saying “Normal” isn’t Normal
There seems to be some taboo over using the word “normal” with the special needs community. I get it, we don’t want our children to be viewed as abnormal. Whenever something isn’t considered to be normal we automatically assume it’s bad (even if that assumption isn’t true). We don’t want the world to view our children as being bad, or having something wrong with them. So we avoid saying it.
I think sometimes, we avoid using the word because all we want is to BE normal.
Longing To Be Normal
Wanting to be normal in and of itself isn’t bad. In fact, I would say if you’re a special needs parent and have never secretly wished your child didn’t have special needs that you are a liar. Guys, we don’t want to spend our life doing therapy exercises all day every day. We don’t want to schedule all of our plans around seeing various specialists, or cancel vacations because of surgeries. This isn’t a life anyone wants.
It’s perfectly normal to want to be normal. I look at other families go about their day to day lives. They don’t have to take into consideration even a fraction of what a special needs family considers when going about their day. Things like: do they have van accessible handicap parking, does the store have an elevator, what are the bathroom facilities like, can my child even get into this building (you would be surprised how many times that answer is no). I mean seriously guys, most special needs families can’t even send their child out to play in the yard by themselves. I would be lying if I said I didn’t struggle with jealousy in this area.
Don’t Let the Desire To Be Normal Consume You
While there isn’t anything wrong with wanting to be normal, it’s very important we don’t mentally park there. Here’s the thing friends. We’ve been wired to believe that we can achieve anything we want by working hard. While in some situations this may be true, when it comes to our special needs children this is a lie. No matter how hard we work our child will always have special needs. While we do see progress through extensive therapy, the underlying issue is always there. We can’t work our way to normal, and that can be a hard truth to come to terms with.
I’ve said it before, and I’ll say it again. As special needs parents, it is so very important that we grieve our child’s diagnosis. While it’s ok to wish we were just like everyone else from time to time, we can’t let those feelings consume us. We must go through the grieving process to come to terms with what our “normal” looks like.
It’s also important to remember that this grieving process will go in cycles. It’s not uncommon for a special needs parent to fully embrace their role and then wham, something is said or happens that causes you to grieve all over again. When that happens, please know it’s not because you’re a bad mom. This is what normal looks like for a special needs family.
Embracing Your “Normal”
They say normal is a relative term. It’s true. While it’s easy for special needs parents to look at other families and think that is what normal looks like, we all have our own version of normal. Truth is every family has their challenges, they just don’t always stick out. Their challenges aren’t as obvious when they walk down the street as ours are when we’re pushing the wheelchair. In fact, I’m sure if we knew what some of those challenges were we wouldn’t trade for the world.
Our normal may not be how we planned our life would go, but it's one we should embrace. #specialneedsparenting Share on XIn those difficult times of longing you were just another typical family, grieve if you need to. Then, remember the blessings that come with raising a special needs child. Remember to take care of yourself and get respite when you need it. Preventing burn out is probably the number one thing to keep you from mentally parking on the negative aspects of special needs parenting.
Find the joyful moments with your special needs children and embrace them. After all, most kids no longer want to cuddle on their mom’s lap after a certain age. I for one am happy that it’s normal for our special needs children to want to cuddle with us for years to come.
Our normal may not be how we planned our life would go, but it’s one we should embrace.
Thank you Amy for this lovely piece on your blog. I have felt everything you describe, as if I had written this myself. I have two boys with special needs and I do often wonder what life would be like if they didn’t. Then I get a wonderful hug from my 13 year old who is always happy to see me, or get to see the smiles on the faces of people who get to meet my vivacious 9 year old, and I am thankful for who they are.
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I do try to embrace my normal, although at this moment the mountain of impending puberty in my 13 year old is one that regularly seems too hard to climb!! Other parents seem to have survived it though so maybe we’ll make it after all.
Thank you for reminding me to be joyful.
Aww Julia you’re welcome, thank you for your kind words of encouragement. It’s so hard isn’t it! Blessings to you and prayers for making it through puberty! We still have a few years before we need to climb over that mountain.
Beautiful. A healthy depiction of the special needs grief cycle. We are not alone.
Thanks Denie