For the past 6 months, I feel as though I’ve been walking around in a fog that is filled with every single emotion that a human being can possibly experience as I’ve been gasping for air in an attempt to accept this new reality that my world has now become.
A reality filled with constant paperwork, visits from home therapists 4-5 days a week, weekly reminders to myself to take care of myself and my relationship with my husband, a new level of worry for one of my children that I’ve never experienced before, staying home more than others, and as if that’s not enough, a furiously tiring war within myself in which I just can’t seem to escape or win.
I’m exhausted and I often feel defeated; more often than not to be honest. My fight has weakened and my focus on self-care has become almost non-existent. My ability to focus on one thing at a time has completely disappeared. You see, my new reality is that my 2yr old toddler, who is my youngest son and an absolutely beautiful miracle for my husband and I, is struggling in his development. He is currently considered to be at risk for autism as he has failed a number of tests including the MCHAT and STAT. Right now, we are in the process of having him evaluated for an official diagnosis which is not a simple process.
When he was first identified as being at risk, at 18 months old, I honestly had no idea what that meant or what to expect. My husband nor I were well educated on autism as we have never experienced it within our family or close friends. My first thought was “ok what does that mean?”. Of course, I knew of the word “autism”, but I really didn’t know anything about it’s definition, symptoms, treatments, etc.
We were thrown, or more like unceremoniously dropped on our heads, into a world filled with names, numbers, paperwork, research resources, social media groups, and acronyms. The one term that hit me the hardest throughout all of this was “disabled”. That one word was, and still is, like a horrible slap in the face that makes me nauseous to think about much less say out loud.
Overwhelmed doesn’t even seem strong enough of a verb to describe the emotional undertaking we have experienced. I soon developed some new close “friends” called a filing cabinet and an organization app designed to help those with healthcare needs. Funny how things that seemed so trivial before could so quickly become such an integral part of our lives now.
We quickly learned that autism is a spectrum, not one size fits all, and we were very lucky that his signs were caught at such an early age because not only was early intervention available for him, but it was absolutely imperative at this age in giving him the best future possible. At this point I became grateful for having this identified early and thankful that so many services were available for not only him, but also us as his parents – at least until the time he reaches age 3 that is. I was able to set aside my fears by putting all of my focus on arranging and participating in my son’s therapy.
As the months went by and therapy became a norm in our lives, our knowledge of autism spectrum disorder grew as well as our concerns. Although he has made some progress in certain areas, our son also seems to have just as many set backs. My mind tends to revolve around him 24/7. Every little thing that could be a “sign” for autism is now a documented concern. The conflict within me between “is this an autism issue or does he truly not understand what we are trying to convey here” is a constant nagging battle with every meltdown and tear. Trying to determine where that line between “this is something we should punish for” versus “this is something he truly needs help with”, quickly became a source of contention between my husband and myself with no real answers from any resource available to us and still is today. Not having that final diagnosis yet makes all of this 100x worse as we just do not know what is right or wrong at this point.
The emotions that come with this type of situation are extreme and they vary from moment to moment. There are many parents out there of children with autism, or other special needs, who have overcome this stage in the process. They either hate it or they have accepted it and do not let it define their child. Some border on the line of both. I know that my son is different. There are days in which I say “no, he just has some delays and quirks but I don’t believe it’s autism”. Then there are days in which I say “I have no doubt he is on the spectrum”. Either way, the conflict inside me continues.
I am angry that my child is not as others his age. I am sad that he has to work so much harder at things that come so easy for others. I am terrified that he may never speak, he may suffer from this for the rest of his life, and what may happen to him when I am gone. I feel guilty knowing that I have no idea what caused this and I question whether I did something to cause it. It breaks my heart to think that I may never hear his voice or be able to have a conversation with him; I may never hear him say that he loves me. At the same time, I am joyous that he is healthy, happy, and is able to show me affection. I know that he is smart; he makes that clear in his daily play and interaction. He is blissfully oblivious to his differences.
My son lives in his own little world in which he is happy and content. He communicates with me by pointing, taking me by the hand to show me what he wants, using the one sign he has learned for “more”, and smiling or laughing. He is a beautiful and amazing little human being that keeps me mesmerized by his every move. I envy his innocence and lack of concern for what occurs around him every day.
I have talked about how there are some things in life that no one prepares you for. This is one of them. This is my life now and there are many days that I spend just wanting to hide in a corner and cry. I just need to get it out to be able to move forward. I love my son just as he is and I am working to come to grips with the possibility that he may be like this forever.
Some may say I shouldn’t have to work on this. Some may want to criticize me. Some have absolutely no idea what this life is like but before you judge ask yourself, what parent would want for their child to have to struggle and work harder than others for the rest of their lives? No parent wants this for their child and it’s hard to accept that the life you imagined for your child may never come true. Yes, it hurts and maybe it is selfish of me to have wanted more for my child than I can provide. I’m ok with that if it’s the case. I’ll accept that label.
It is OK to not accept something just because you are supposed to according to society. It’s a part of growing and learning; something in which we all do every single day. It’s called being human. Don’t let anyone tell you otherwise. We all accept what we must in our own time.