My heart is breaking for a dear friend of mine who is walking a path very similar to the one I am marching along. Today was her culminating day, that day when the cold-hard truth slaps you in the face and says the word you've been dreading for months and years. It is one thing to hear medical professionals, educators, and diagnosticians talk around the possibility that your child
may have autism. It is quite another thing to see that word written on a piece of paper under your child's name--written in ink, in un-erasable, unforgettable,
permanent ink.
Of course I know how my friend feels because I have gone down this road before. I remember feeling sick to my stomach, angry, disheartened, deplorable, and hopeless. As much as I wanted it to feel like a simple diagnosis, akin to "flu" or "near-sighted" it felt more like a death sentence, like my family was being destroyed and there was nothing I could do to ever regain the picture of happy-normalcy I had been dreaming about for so long.
I am now at least three years further down that road than my friend is and I have learned so much since then. I want to take this opportunity to share some of those lessons with her and with all of you who may be in similar circumstances where you feel hopeless and ready to give up. There are so many reasons why you need to keep on marching. And here are a few.
1) Your child is the same beautiful person he or she was before the label.
Sometimes, labels make our lives easier. Like, for example, when you are at the grocery store and you need to buy a can of corn. Without labels, you could end up with green beans, carrots, or, God forbid, beets. But just as the label on the can of food cannot tell you exactly what is in that can, a label on a child doesn't tell you every single thing about that child. Not all canned corn looks, tastes, or even feels the same. They are all different in some way, just as every child--special needs or otherwise--is different. The day my daughter was officially labeled as "Autistic: Early Childhood Non-Categorized" she did not become a different person. She was still the same brilliant, moody, beautiful, silly, letter-loving child she was the day before. She was suddenly eligible for a different type of education, which in many cases is a good thing. But she wasn't any different. In the case of education, having a diagnosis or an official "label" should be for programming purposes, not for identification. Educators should never be grouping children together, implying that all autistic children are the same. I have known dozens of children on the autism spectrum and while I have sometimes been able to understand certain behaviors or predict certain outcomes for one student because I am familiar with the habits and behaviors of others, I have never met any two autistic children that were remotely "the same," just as I have never met any other two children that are exactly the same. Likewise, we should never assume that the programming that works for one child will certainly work for another child simply because they have the same label. Just because a child is eligible for a certain program does not mean it will always be effective. My own child is a very good example of how this is true. She was eligible for a structured-teach or autism unit classroom but I knew that would not work for her and chose to put her in a regular general education classroom with inclusion and resource support, which worked brilliantly for her. So, while there are some instances where labels are necessary, as parents, we cannot allow them to define our children--not to educators, other parents, peers, and certainly not to us.
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| My beautiful, extraordinary daughter, Imma-Jane |
2. Wishing your child didn't have a label does not make you a bad parent.
Over the years, I have read lots of parents posts that say things like, "I'm so glad my son has autism because if he didn't, he wouldn't be the same wonderful child he is today." If you truly feel that way about your child, then more power to you. I don't judge anyone who thinks that because they have every right to feel however they wish about their child. I, on the other hand, hated autism every single second of every day that it was in my life. I woke up every morning cursing the word and went to sleep every night literally praying for a miracle, that I would wake up the next day and my daughter would be normal. If you think that makes me a bad parent, that's okay. You're allowed to think that. But you see, I could hate the condition and not hate my child because, in my interpretation, they are two separate things. My child is the wonderful, brilliant, loving spirit that she is--and she was being horribly hindered by this ugly thing that was preventing her from truly experiencing life. She was never going to be able to talk, to understand, to read, to have a meaningful friendship, to enjoy fireworks, to sit on Santa's lap--if she couldn't get away from this cursed condition. I didn't want to change who my child was, I wanted to break down the barriers and limitations that were impeding her. Now, three years later, after having learned that she was never truly autistic in the first place, I'm glad that I fought a hard battle against that label because if I had chosen to accept that she could not escape the clutches of that diagnosis, then she may very well have continued to spiral downward and further into the spectrum. Please don't misunderstand--I am not at all saying that I believe all children on the spectrum have a lesser quality of life than other typically developing children. I know many autistic children who have no problems functioning whatsoever and seem very much like their typically developed peers. But in my child's case, the differences she was demonstrating were hindering her quality of life and if we hadn't successfully found a therapy to help her, she would have continued to grow further away from her non-disabled peers.
The bottom line is, once your child has been diagnosed as having a disability, it is okay to grieve for your child. Not the child you have, but the child you thought you would have. If you don't allow yourself to go through the grieving process, you will never be able to fully move forward and help your child find ways of progressing. And without you, your child will not make progress.
3. Special is Extraordinary
While there are many aspects of autism that make life incredibly difficult to navigate, it also has a way of making life extraordinary. I know so many children with autism who also have remarkable gifts. My own child, for example, can put puzzles together without even looking at the picture. She just looks at the shape of the puzzle piece and can grab the right one out of the box and place it perfectly and effortlessly. I had a kindergarten student who taught himself to read in a matter of days. One day, he couldn't read. The next day he was reading on a second or third grade-level. This is called hyperlexia and there are many autistic children who have some form of this amazing skill. Even when we are unable to detect the gifts these children have, whether it's because of limited communication or masking from some other disability, they are all precious, truly unique individuals. It takes an incredible person to be able to recognize the strengths of children with limited or no communication skills and to be able to capitalize upon these strengths. These are the types of people we must be looking for when we select therapists, child-care providers, and educators for our children. Though we now know Imma is not autistic, she does have sever language processing disorder. Essentially, it is very similar to being in a foreign country where you only understand one out of every ten to twenty words. Can you imagine living in this type of situation? What if you went to work tomorrow, met your boss at your desk, and the only word you could understand was "computer"? How would you do your job? You sit down at lunch and the women next to you says, "Hi! Eat. Chair. Dog." How would you have any idea that she really meant, "Hi! What are you having to eat? Let me scoot my chair over. I was just telling Jenny about my new dog." That is every minute of every day for my baby. And yet, we are at the point now where she is actually fooling people! When she meets someone new now, sometimes they don't even know that she has a disability! Try telling me my baby isn't extraordinary.
As parents of children with special needs, we need to be ambassadors to everyone, spreading the word that special is extraordinary. If we don't carry that mantra in our hearts and live it everyday, then people who aren't familiar with these amazing people we care so much about are never going to understand their journeys.
4. Autism is not a four letter word.
Even though I know the pain of seeing that word--or any label that represents a disability--associated with a loved one, I think it is imperative that we hold in our hearts that this word is not a definition and despite what I said before, it's not a curse. I described how I felt about the word being associated with my own child so I know how difficult it is not to focus on the negative--I certainly dwelt in that land for too long. But the more we talk about autism, the more we focus on the gifts and the positive aspects of our children's character, the better the chances are that others will truly be able to understand the true nature of the disability. Most people really don't understand that autism is a spectrum disorder, they have stereotypical images and thought about people on the spectrum. I've read a lot of ignorant comments on social media sites, drawn from misconceptions and inaccurate information. Let's really start talking about autism spectrum disorder--and attention deficit disorder, and dyslexia, and language processing disorder, and everything else--so that more people will be informed and some of the misconceptions and fear will dissipate. If we are afraid or ashamed to talk about the nature of our own child's differences, how can we expect those who do not live it and breathe it every day to talk about it intelligently?
5. Hope is never hopeless.
There's been a lot of talk recently about a certain celebrity giving "false hope" to parents of autistic children because she claims her child was "cured" of autism and, since there is no cure for autism, parents are being led astray. I've read a lot of comments from well-meaning parents who firmly believe that we will never find a "cure" for autism and it is wrong to hope that children will ever be "normal." And, while I rarely curse, I'm going to have to call BS on that one. I say, if people want to hope, let them! How can anyone know if there will ever be a "cure" for autism or not? We once thought there would never be a cure for AIDS and look how far we've come with that disease. As long as parents are continuing to look for valid treatments for their children, finding ways to make progress, and fighting the good fight, then what harm can hope do anyone? If we are looking at this purely from the perspective of having a child who was once diagnosed with autism who is now no longer diagnosed with autism, then I actually know more than one child (including my own) who fits into that category. I am not saying that my child once had autism and now no longer does because I am of the opinion that my child was never actually on the spectrum to begin with, but she did have a label and now she doesn't. I also believe that, if my husband and I had not chosen to fight against the programming recommended for our daughter, she may very well have tested on the spectrum eventually because the therapy she was receiving had stopped working for her. We were hopeful that we could find a new therapy that would help her learn how to communicate and socialize better so that she would no longer show signs of autism, and through that hope, we were able to make some changes that led to the result we had hoped for. Hence, hope can be a beautiful thing and I am of the opinion it is always helpful to be hopeful.
I do not pretend to know everything there is to know about parenting a special needs child but I do hope that others can learn from the experiences I have had. If even one parent reads this and feels a little bit better--a little more hopeful--for the future, then it was certainly worth the time and effort it took to write it. Please remember, Warrior Parents, you are not in this alone. Just keep marching, keep putting one foot in front of the other and eventually, you will look back at where you are today and think, "I can't believe how far we've come!" Your child is worth all of the time, energy, resources, money, exhaustion, anger, sadness, hopelessness, hopefulness, and love you've poured into him or her. If I am ahead of you on this journey, I am happy to pull you up to where I am in any way that I can. If someone is behind you, please turn around and show them the way because we cannot do this alone. God bless all of you as you travel this jagged and windy path and please let me know if I can be of any service at all.
