My daughter Mackenzie Jean was born August of 2007. She was the first child, the first niece, the first grandchild in our family. Everything she did was amazing. She was a good happy baby and we just absolutely adored her. Sounds pretty typical so far, right? We were blissfully happy for a year. Her 12 month check-up was where our typical story started to unravel. The bubbly bouncing pediatrician came in to the room and she squealed “Sooo, how many words does our girl HAVE!?” and my husband and I just looked at each other. Mackenzie didn’t have any words, she barely made a sound, but she was such a good baby, so patient and happy. She was walking at 10 ½ months, now running even and played with toys and ate and slept well, what else did she want? The rest of the exam went and then, the suddenly not as bubbly, pediatrician said it was good idea to get a speech evaluation, but not to be concerned because she’s too beautiful to be anything but perfect, so at most she may have a speech delay and speech therapy would help her with her words. We walked out with a referral for an Early Invention evaluation and a knot in my stomach that would last years. It’s funny I still see that bubbly pediatrician but when I look at her and all I see is the last day of my normal life in that clueless perky smile of hers. Not her fault, obviously, I’m sure she’s wonderful person and she’s been a fine pediatrician, but everyone has different roles in people’s lives and well, that’s hers in mine.
We got the EI evaluation scheduled about a month later and by then this Google savvy Mom had spun herself into quite a tizzy by over researching “speech delay” and then reading the horrible afflictions that listed it as a symptom. Just a word of advice, whatever you do, don’t ever go on WebMD. Trust me. Anyway, two evaluators came to the house and Mackenzie qualified quite easily for speech. We were told that our little girl was too bright, too aware and too in tune with the world so autism wasn’t a concern, but she did seem to have trouble engaging and showing shared interests, but then again she was just over 12 months old and those things will most likely happen once the words came. Months went by and there was little to no improvement in speech and her speech therapist was concerned that it was hard for Mackenzie to stay engaged or interested in anything around her, so we went back and got more speech and ABA to help her engage. During one of my late night “speech delay” web trolling sessions I read that fluid in the ears could hamper speech development, so off to the Ear Nose Throat doctor we went to rule out hearing issues. What we found was that there was a lot of fluid in her ears. We rejoiced! Fluid! She can’t hear well! Ah ha! That’s why she’s not talking or engaging!! A revelation, we didn’t think about fluid in the ears, oh us, silly first time parents! So they put tubes in her ears to relieve the fluid to help her hear, which would in turn, help her speak. We brought her home and expected a wide eyed reaction to our voices, like something from those YouTube videos of deaf people hearing for the first time, you know the ones that bring out the ugly cry? Yeah, no, not at all, no miracle. As the weeks and months went by, it became obvious that the tubes weren’t going to bring on any speech. So we continued on and listen to the therapists when they gushed about what a good problem solver she was and how smart she was and how great she is with puzzles. And we believed. We had to, we had no choice.
There were other more subtle things that, looking back, I could have seen that could have concerned us, but then again, she just wasn’t your normal toe walking, eye contact avoiding, lining toys up, spinning things- I have autism poster child. Yes, she seemed to prefer to play alone at day care but at 18 months parallel play is normal, she was certainly engaged with us at home, and yes, she didn’t look where you pointed without prompting but seriously, does that an autistic child make? All of these things and other people’s observations and then reassurances all swirled around us for months. It was impossible to talk about outright, I couldn’t even say the word, really, my brain/heart literally would not let my mouth say the word. So we would talk around it and friends and family would reassure us that “everything’s going to fine” “She’s amazing, so cute” “No one goes to Kindergarten without speaking”, “She’ll catch up, it’s just a delay” – all of it – and we believed it, we believed it all. We had to. We had no choice.
We all know where I’m going with this because if autism wasn’t to be our future, I wouldn’t be writing on the Special Moms Network family feature, would I? So it came to be that in January 2010 Mackenzie would finally be diagnosed. But not with autism, oh no, the psychiatrist, I believe, now, took pity on a crying Mom and labeled her PDD-NOS, Pervasive Personality Disorder- Not Otherwise Specified. Basically, the Diet Coke of autism, all the cola without the guilt. I took such solace in that. She wasn’t autistic, thank the Lord, she was simply PDD-NOS. The psychiatrist said she would talk, go to college, hold a job, be a functional member of society and we rejoiced, and we believed her. We had to. We had no choice.
Back to Early Intervention we went. “We have a diagnosis and little time! She’s going to Kindergarten in two short years and there’s so much catching up to do!” We went in and got 40 hours of ABA a week, speech therapy 4 times a week with a little OT to round things off. The more therapy the better! We were on a mission to pull our little girl from the grips of PDD-NOS. And change came, but not the kind we were hoping for. We loaded so much therapy on that sweet, quiet, calm little girl that she worked harder than most adults during the day, every day. She became stressed out, anxious, and started with behaviors and tantrums that I’d never seen in a child before. We were told it was an adjustment and that she would come around. I actually felt bad for the therapists. Believe that? Not my daughter, this was for her own good, she would thank me one day and I didn’t feel bad for her as she was throwing herself on the ground, banging her head and biting her arms and screaming in protest. I felt bad for the therapists. I hoped they wouldn’t leave us. I think back now and am disgusted with myself. That’s the thing about holding on to something that’s simply not going to be. You end up sacrificing things that are unimaginable to you in your right mind. We were chasing the impossible. But we had to. We had no choice.
She began a developmental preschool at 3. Full day small class staffed with the most amazing teachers. That’s one of the things I can say changed in me during all of this. I don’t know if I would have considered myself a bad person. I didn’t break laws or even steal my neighbor’s paper but I wasn’t like these people. I don’t know how someone is “called” to be a special education teacher or therapist but what they do for the children and the parents is nothing short of extraordinary. They have a gift of patience, understanding, communication and the just the ability to appreciate, that is only given to the most special of souls. Watching them and working with them made me a better person. Having them love and encourage and appreciate the most special girl in my life made me a better person and I learned as much from all of them, from preschool to third grade, as Mackenzie did.
On top of the special school, tons of therapies both provided and private, we also tried all sorts of supplements, vitamins, diets, allergy treatments and even medical treatments that some would consider dangerous, all in the name of saving her. Anything I read about, heard about or dreamed about, we tried. Thousands of dollars spent and hundreds of hours in doctor’s offices. The biomedical doctor that we saw every two weeks ran tests and added supplements and vitamins and medications to improve her heath and bring her to recovery. For Mackenzie, some things like diets and allergy treatments, made a real difference in her health. Her hair started to grow and all of a sudden we had to cut her nails which we never really had to do before. The dark circles under her eyes lighten and the small eczema patches on her side went away. Her all but constant bad stomach turned to a well time clock and the bloated stomach that I never really even noticed before flatten. I don’t regret the time or money but I had hoped for and was encouraged to believe that there was going to be so much more and we believed them. We had to believe. We had no choice.
At age 4 she still didn’t speak, she could use some sign language and the developmental preschool she attended had introduced PECS. She blew through that program and started using an iPad with a program that allowed her to talk by selecting icons that are then “spoken” back aloud. Far more advanced than PECS and the way she navigated that program with such finesse was impressive. This was really eye opening for her because she finally had a voice. Of course 90% of the time she used it to request food which over the course of the years of ABA had become the only thing she was interested in and the only reinforcement to get anything out of her. She has just recently in the past couple of years started to really communicate with us on her iPad. It’s still very simple things, but even that is so helpful for her to feel understood and to feel like she’s a part of things.
As we entered Kindergarten I was nervous. It was obvious she wasn’t going to attend the Kindergarten we had hoped for two years earlier, but she was also changing schools and I was petrified that we would lose everything we had gained. Would they understand the tools she needed to remain calm and focused? Would they know the signals that she needed a break? Would they just feed her all day like a performing circus monkey? So much anxiety. I remember speaking to the principle and I asked if it was okay if I hid in the bushes to make sure she got in the building okay. I mean, after all, the school was on a busy road and there are so many kids at once all moving about. She laughed and then grew silent when she realized- I wasn’t kidding. I was that nervous. I can only now appreciate, what me, crouched in the bushes that lined the bus drop off, would have looked like to the other parents. It probably would have been a serious security issue as well as super creepy.
There was a definite period of adjustment to the new school, but overall she did fine. She continued to learn on her iPad and although words didn’t come, communication did. She began to learn and communicate on her iPad, and not just use it as a menu board. She even won her school grant when they submitted a video of her being so proficient on her iPad. That was a very proud moment for her parents.
But as improvements came and so did new quirky behaviors and preferences. Aside from tantrums and challenging behaviors, all of a sudden my little fashionista would only wear leggings and pushed them so low on her hips that tunic tops were a must, lest she moon the world all day. She hated tags in her clothing, insisted on a certain pair of sneakers and she wouldn’t wear her hair in braids or ponytails anymore. With one holiday break from school with Daddy, who wasn’t too keen on doing a girl’s hair, she all of a sudden preferred the Kurt Cobain, part down the middle, grunge look which sent us running to a stylist for a cute bob. Little sensory things like that kind of creep into permanence when you’re not paying attention.
In Second grade we went back to our home district. They had created an autism program in the typical schools for our kids so they no longer had to ship them to other towns for the education they needed and deserved. I was very happy and excited that our district was stepping up for their kids and loved the idea that she would attend the same schools that her Dad and I had, but I was very nervous about Mackenzie being the guinea pig for a whole new program. I was lucky in the fact that my Family Trainer was very much a part of the creation of the program and always had Mackenzie in mind. There again, those special people doing amazing things for our special kids. There were some bumps along the way, as expected, but it is a great program where she is given all the supports she needs to do the best she can. However, her reaction to changing schools after two happy years was not what I had hoped. Her anxiety and short fuse was impacting not only her education, but her safety and over all well-being. We tried vitamins and minerals, acupressure, oils, deep breathing, all of it, and ultimately decided on an anti-anxiety medicine recommended by her neurologist. Not ideal, but it helped her tremendously.
She has been in the same program in district for two years. She still has behaviors when she’s frustrated or not understood or sometimes simply because she doesn’t get her way. “Delayed access to preferred items” is what special ed teachers call it. I call it “Give me what I want before I go postal on you”. She just gets frustrated, the iPad is great, but it can’t replace verbal communication quick enough for her. She lacks reading and spelling skills to go beyond pictures and there just isn’t a picture for every situation. Where she has really made great strides is in learning academics and even more so in actively participating in the classroom. She also loves music, art and gym. We get such joy from projects that come home that she made instead of the ones that her 1:1 did. Big difference and parents can always tell. She is even learning to play piano. Just this week we got a video of her paying Hot Cross Buns.
So that’s where we are now. The years from the 12 month check up to now, 7 years later, have been challenging, terrifying, intensely sad and sometimes utterly hopeless. I can say that I have never thought of myself as a weak person but these years brought the slow evisceration of my hopes and dreams for my baby and were not taken well. I spent a long time going through something similar to Kubler-Ross’ 5 stages of death, Denial (check), Anger (double check), Bargaining (like a third rate used car dealer), Depression (double serving with a side of 50lbs) and finally, and I’m still not 100% there, acceptance. Autism, for me, was like a death, the death of a life we had envisioned, a future we had planned for, and it was real, but it was silent. A suffocating all-consuming painful silence that you smiled through as you watched typical kids the same age just naturally do and say things that Mackenzie just couldn’t do, listening to friend’s complain about their kid’s sports teams or all the parties and play dates with such busy social lives that seem so ridiculous and petty to you. Not that you don’t care, but you just wish your life was that simple. We developed automated, neutral, non-informative responses to the head tilted, pitied filled “So how’s Mackenzie doing?” query. It was soul crushing moments alone in the car, a breakdown in the shower, isolated tears after an evaluation, so much of it just between my husband and I because honestly no one understood it but us. We went through it together and the only thing I can say about how we did it is that we walked together, still do. Sure, as the Mom, I took the lead, but he always supported me, came to meetings, to doctor appointments, I never felt abandoned by him. We balanced each other. When I broke down he was there and when he cracked I was there. Not easy and I’ll be forever grateful for that. It’s such a stressful, painful, personal thing that a strong relationship could easily go awry. We very slowly realized Mackenzie was absolutely, autistic. We slowly became aware of the fact that this neurological disorder that would not go away, she would not grow out of it, and she would never catch up. Seems simple enough, but it took a long time for us to accept. We had to accept it. We had no choice. And it has made all the difference.
And as I’m reading this, what turned out to be a much longer than anticipated writing, I really want to stop and make sure that it is perfectly clear that all the while, when we were going through all of this, she remained our girl, our light. She has always brought us such joy and love and laughter. Nothing makes us more full with love and gratitude then hearing her laugh or seeing her smile. We always try to fill our time with her with fun things that she loves and do our best to make sure she knows that she is understood and appreciated. Looking back it’s always easier to remember the trials, the hard days and the heart breaking moments, but there were many triumphs as well as an amazing life that is still filled with love and hope.
Now my mission is not to cure her, but to enable her. I want her to thrive not just survive with autism. She is who she is. She’s bright and sweet and will charm you silly with bright eyes that can see directly into your soul. She’s playful and cunning and will effortlessly manipulate you until all of a sudden you realize you’ve been completely had. She’s very strong willed, which is autism parent speak for a tantrum throwing titan. She stims and perseverates and has pretty significant sensory issues and she is the definition of that old saying “give an inch, take a mile” and she does it with a smile and a bat of those eyelashes that I’m so jealous of. She wants to please, but on her terms, and honestly, shouldn’t we should all be a little more like that? That’s the funny thing about my Kenzie, she teaches me so much by just being who she is. I have learned that you will find people who love you and your family just as they are. She is unabashedly Mackenzie. She is my daughter and she is amazing. I love her and I have every faith that everything is going to be okay. I have to. I have no choice.