We all have those days.. especially as a parent where we feel like we failed. Today was a particularly hard day for me being that I had both of my children have difficult days as well as a husband who struggled with some challenges at work. However there are the mothers that struggle ‘a tad’ more. Those are the mothers with children who require that extra work. I have a child that may be on the sensory scale when it comes to challenges (although some have mistaken him for being autistic) but he is not on the Autism spectrum. This week – memorial day week – reminds me of the mothers of Autistic children. Why?
I was 12 years old when my nephew was born into this world. I was closer to him in age than I was with some of my siblings. May 31st is my nephew’s birthday. I remember feeling so overwhelmed with happiness when he was born as he was my parents first grandchild and I was the youngest. I thought of him as that younger brother I always wanted. Then the confusion set in when I came home from school to be told that he was “different”. We later found out he suffered from a brain hemorrhage at birth. Despite passing all sorts of milestones – I remember him losing a ‘normal voice’ and his giggling personality to autism. I don’t talk about it because I feel guilty. I feel like I have no right to feel upset or angry or sad about what has happened to him as he is my sister’s child, not mine. She has to be the one that deals with the most on all of this. I may have lived with him when he was little but she has spent every day living with him and the unpredictablity, discouragement and appreciating the little things.
I am still surprised when I come across people who think “Autism doesn’t exist” or “the child wasn’t disciplined enough”. I know from first hand experience this is not the case.
There are bad statistics for mothers who deal with severe autistic children. They have to do with the success of their marriage and their health just to name a couple. This makes me concerned for my sister, but makes me think of the’ general Autistic community’ and the EXTRA stresses they carry each day.
I know as an aunt there are times I treasure. I know my nephew doesn’t like to be touched much but I have sat in silence with him and he has laid his head on my shoulder. That day makes me happy.
The day where I hadn’t seen him in years and wasn’t sure if he remembered me – and I walked into his room only to have him tell me to “come here sweetheart” in the most excited voice as he hugged me.
These moments I can think of and remember knowing they are not the norm – they are the exception. I remember when I was younger and my nephew lost it when I was in a van with him. He had to be warned the indicator was going to come on to turn and even when he was warned he still protested the sound of the clicking of the van.
It also makes me wonder about the people who lose it with road rage when someone doesn’t use their indicator – is there a possibility that a driver is weighing up whether to upset their autistic passenger with the noise of the indicator or someone outside the vehicle with road rage.
Mothers of autistic children know there are so many more things they have to pre-plan and worry about with such unpredictability of knowing that no matter how much you plan there is still something small that may cause a national-sized meltdown.
So with this I just wanted to write something small – and not even close to measurable in honoring those that deal with this stress everyday. This is the weekend that I think of you, and consider the stresses that are on your shoulders, and hope and pray that there is someone near and dear to you that can help relieve some stress.
I hope you have a chance to take some time for yourself this week. Take care of yourself because there is so much on you. You aren’t alone.