The moment you see those two pink lines on a pregnancy test, your life will never be the same. You immediately start thinking of boy names and girl names, if you haven’t been doing so for months already. You find yourself imagining who this tiny person inside your belly will grow up to be. Is she going to be a nurse? Will she have blonde hair? Where will he go to college? Is he going to play baseball and football?
One question that rarely enters a parent-to-be’s mind is, “Will my child have special needs?”
That just isn’t something that people think about. Nobody PLANS on having a child who is going to be destined for a life that will be much harder than it ever should be. As I daydreamed about all of the precious memories my husband and I were going to make with our child, it never crossed my mind that a large number of those memories would include countless doctor visits, evaluations, medical procedures, and therapies. So our world was completely rocked when we heard those words that every new parent fears…
“Your child has autism.”
Although I didn’t know it at the time, I now realize that I was in shock and denial for the first few months after the diagnosis. I had immediately started setting up every single therapy her doctor recommended, because a part of me thought that once Raelyn started therapy, it would become evident that she in fact is NOT autistic.
For each therapy, there is that dreaded evaluation process that every special needs parent is all too familiar with. If you’ve never had to go through this painstaking process, let me briefly explain how this goes. A complete stranger will assess your kid, tell you everything your kid CANNOT do, and then show you how he or she compares to their peers.
When we had Raelyn’s speech evaluation, she scored in the 1 percentile for receptive language, expressive language, and overall communication skills. Do you know how devastating it is to be told that your child’s language skills are less developed than 99% of other kids her age? What this actually means is that my 15 month old had the language skills of a 7 month old.
For me, this is when it really sunk in that my child wasn’t typical. My kid wasn’t going to just learn to talk on her own, like other kids do. When it hit me that this was my new reality, it brought me to my knees. The fear of the unknown physically made me hurt. I had never felt this type of pain before. It became clear that we were in for a long, hard road. I quickly learned that it could take years of therapy before I even get to hear my child call me “mama.”
None of this was in my plans. This is not what I had signed up for. And you know what? It wasn’t fair. Why did my friends have “normal” kids while I was dealt THIS hand? It hit me hard that the vision of the kid I had imagined was slipping away before my eyes. That’s a hard pill to swallow, and a difficult idea to accept. So how do you deal with all of this?
You grieve for that child you had imagined. Because in a way, you DID lose a child. All of those milestones and moments you had dreamed about were now going to be completely different. All those parenting books you read no longer apply. You’re thrown into this new scary world, completely alone, with no idea what to do first.
You grieve for the life you thought you were going to have. For some parents, such as myself, that means leaving your career to become a stay at home parent. That also means that the financial cushion of having two incomes becomes a thing of the past. Any extra money will now be spent on therapies, appointments, and special therapy equipment. Kid free date nights will be few and far between, simply because there are very few (if any) people who are capable of handling the many dimensions of your extra special baby.
You grieve for your marriage. If any couple is able to receive a life changing diagnosis and not have their marriage suffer in one way or another, then they are a rarity. Marriage is hard without kids. It’s even harder with typical kids. It can become damn near impossible when you have a child with special needs.
You grieve for the friends you will lose and the family members who will stop coming around. It makes people uncomfortable to witness the struggles you’re faced with on a daily basis. So instead of stepping up and being there when you need them the most, a select few will simply stop coming around all together.
You NEED to go through this grieving process in order to fully accept the diagnosis.
You will feel an immense amount of guilt as you grieve, because others will tell you how blessed you are. And you ARE blessed. But you are still allowed to occasionally be sad about your situation. Just because you grieve, it doesn’t mean you wish your life had taken a different path. It just means that you now have to learn how to navigate your way down this new path you had never planned on taking.
I wouldn’t change a single thing about Raelyn.
If I had the ability to take away her autism, I wouldn’t. Without a doubt, I would not want my kid to be anything than what she is. I love Raelyn more than life itself, and I love my new life as a special needs parent. But it took me a while to get to this point. It was a process to get to where I am today, and grieving was a big part of that transformation. It allowed me to put behind me the life I THOUGHT I would have in order to move forward with the life I DO have.
Imagine if you unexpectedly lost your spouse. You would be allowed (and expected) to grieve that loss, as you should. After all, you would never be able to truly be happy with your new life without your spouse until you had properly grieved.
Being thrown into the world of special needs parenting with no preparation is no different. THAT is why it is not only okay but also necessary to grieve. If you are a special needs parent, don’t you dare feel guilty for grieving. And if you know a special needs parent, don’t you dare judge them for it.
Once you begin to feel like you are emotionally in a good place with the diagnosis, that doesn’t mean you’re in the clear. You will still have bad days. There will be moments when you feel cheated as a parent. At times you may feel bitter about your situation and jealous of your friends’. You will have days when you end up crying in the middle of the bathroom floor, because you don’t know how else to deal.
It’s okay. You will be okay.
I don’t know how your journey is going play out, and I can’t tell you how to handle it. But I CAN tell you this: you are going to be just fine. There will be rough patches but you will learn how to make it through to the other side. Even when it doesn’t seem feasible, you WILL eventually get through each and every difficult situation you are faced with. This life is not an easy one, but it is nothing short of amazing. Once you accept your child’s diagnosis, your eyes will be opened to so much beauty in this world; beauty that you otherwise would have overlooked had it not been for your child with special needs.
Follow our journey on Facebook: Autism Through Raelyn’s Eyes
Click here to read my post: To the Parents Who Are Tired of Feeling Like Failures