Mommy guilt. I have it. Imposter syndrome. Ding ding ding. I have that too. Social anxiety. Yet another struggle of mine. Do you? Feelings and thoughts such as:
- “Im not doing enough as a parent”
- “Im not treating him normal enough”
- “Im not protecting him enough”
- “Im not exposing him to enough“
- “My child isn’t disabled enough to be in the support groups”
- “People will judge me for getting my low vision, but still seeing child, a cane”
That last bullet point is the reason I’m writing this. Way too often in the support groups I see parents post about their children who are “delayed”. Often the child ranges from 10 months to 3 or 4 years. The parents are lamenting that their child is behind. “Georgia is 10 months and won’t even crawl”, “Simon is 2 and scoots around the house with his hands extended but won’t walk”, “My 3 year old is always bruised from bumping into walls, what can I do?”. The answer for some is quite simple – a cane! Get your baby a cane! This is the tool by which they can “see” the world!
Think about it, if I blind fold you and then ask you to navigate through my house, are you going to feel comfortable? Would you have the confidence to chase the dog or wander upstairs to play with siblings? Probably not. You just lost a major thing you rely on. Your sight. Its what tells you to watch out for that pointy table edge, or the pile of legos that could send you tumbling. Why are we expecting our kids to act any different?
My son didnt crawl. He would scoot around the house using one leg as leverage and feeling around for what was by him. For a bit he would do this funny maneuver where he would fold himself in half so that both his head and feet were touching the floor and then he would feel around. Yes looking at the video, it is cute, but it also broke my momma heart. The fact that he felt this was how he could explore his world was heart wrenching for me.
We didn’t know if August would walk. Even if you ignore the low vision, he has some hypertonia and other muscular issues. His twin, Aria, started walking around 10.5 months. 11 months came and went with him scooting around. A month later they turned 1 and he still wasn’t walking. Then it happened. One night, around 12.5 months I was sitting in the living room while the babies played on the floor. August looked at me, grabbed his cane, and RAN across the living room! I cried. My son was doing something so typical. Something I had been told might not happen – or at least not in the near future. He has been running ever since.
We originally got him a cane at 8 months old. It was the free cane offered through the National Federation of the Blind. His teacher of the visually impaired at the time made it quite clear she felt that canes were a bizarre thing to give babies or even children that weren’t walking. I turned to an acquaintance who lost her vision as an adult for reassurance. The imposter syndrome I often deal with makes me feel as though maybe I treat him in a way that will encourage him to be disabled. This is not a healthy way to think of things but I digress. The acquaintance felt a cane would do no harm. “Maybe he will need one in the future and maybe not, but isnt it better for him to have the exposure to it if he does?”. That stuck with me. It’s the same reason all our baby books are braille. It doesn’t hurt anything for him to have the exposure, even if his eye sight with glasses allows him to live a fairly typical life.
August is laying on the floor facing away from the camera. He is wearing a yellow onesie and you can see the strap for his blue tomato glasses. He is laying on his stomach and holding his cane by the wrong end. This was the day we got his first cane.
All these the feelings bulleted at the top of this post, I have either struggled with in the past or struggle with now. Not just for my son with Optic Nerve Hypoplasia but also for my typically developing kids. I often don’t feel like I am enough, and more than I like to admit, I worry about how others will view my parenting. Many people will act like they are the Godsend on parenting. All I can say is this – trust that you have your child’s best interest at heart and make sure you are doing everything you can to give them a full life. That should always be our goal as parents. Other parents advice may be helpful at times and absolutely unappreciated at others. Try not to care about what so and so from down the street is doing with her child. They aren’t raising your baby and cannot know what you are going through. Just as you aren’t raising theirs. You need to do what is best for you, your child, and your family as a whole.
I LOVE this post from the National Federation of the Blind. I direct parents and caregivers here frequently. I wish this was spoken about more. There seems to be a stigma about getting our children the tools that they will use in the future before they are able to use them 100% appropriately. That is absolutely preposterous. You wouldn’t hand a 16 year old your car keys after NEVER exposing them to a car and not having had them complete drivers education. So why is it being said that our kids should be walking with complete confidence and the ability to communicate perfectly before we xvven introduce the idea of a cane? In the hopes that maybe they’ll “figure it out” and won’t end up with the “stigma” of a cane? The second eye doctor we sought and opinion from told me to stop having my son wear his glasses. He felt we should let his eyes develop more and then do more follow up exams. We followed this advice and my son started regressing. Five months later I sought a third opinion who gave us a new glasses prescription. This was when I went back through my sons medical charts to see the doctor had documents something to the effect of, “the child needs to learn to live with the sight he does have”. Umm what? Why are we expecting our kids to change for the world instead of the world to change for our kids?
Post from National Federation of the Blind: https://nfb.org/sites/default/files/images/nfb/publications/fr/fr36/3/fr360301.htm?fbclid=IwAR38JI3LqWv0EVS96f0R3-OBxtC6gdqoWHtFVD79_KSImCFAXZQyDSRSzjg
Specifying statement: I do understand some kids have other challenges that will delay their crawling, walking, and mobility in general. I realize a cane cannot fix everything but I am a huge supporter for giving them to our kids young in the hopes that it will. What true downside is there?
Love this!! Thank you