From Then to Now
I wrote about the start of our journey until now in 3 parts. You can also find each part in the blog section. As you read each one, I hope that you find strength and joy in knowing you are not alone. Your story may look different than ours, but one thing is for certain. Sharing our stories makes us feel connected, and when we are connected we thrive. This is our story. We hope that one day we get to hear yours!
The Very Beginning- Wait and See
The day my youngest son was born, our family felt complete. He entered the world in the very early hours of the morning and made our little family whole. We went from a fun four to a fabulous five, and I was filled with so much excitement about what the future held.
I remember the very moment they put Max in my arms. He opened his eyes and looked straight at me. It felt like in that split second he saw right into my soul. “You are going to move mountains,” I whispered. I just knew this little boy was going to do very great things. Little did I know just how great those things would be.
In the days and weeks to follow I was taken over by exhaustion. It seemed like right from the beginning, Maxim. Never. Slept. Most babies only sleep an hour or so at a time. They aren’t expected to sleep long stretches, and Max wasn’t my first child. I was no stranger to lack of sleep. But it was different with Max. Our sweet boy truly never, ever slept. He had colic and there was absolutely nothing we could do to calm it. How could his tiny body wail all day and night and not tire out...ever? How uncomfortable he must have been!
We definitely tried all the things, from Gripe Water to special diets for me since I was nursing, to swaddling and white noise. We bounced, rocked, sang, shushed, drove, and walked. When I look back through sleep deprived eyes, I am convinced Maxim cried for his first 4 years of life straight.
When the colic didn’t end we wondered if it was reflux. When reflux medication didn’t help we thought it might be his ears. When the ear and sinus infections were under control we thought maybe he was frustrated because he wasn’t able to talk or move the way he wanted. Maxim had missed many milestones and we knew his battle with colic and then ear and sinus infections couldn’t have helped. He had most definitely been in pain.
Don’t get me wrong, Max smiled and laughed, but to be honest, in the early days it wasn’t often. He responded to his name, but that was rare too. Out of what seemed like nowhere he would cry and sometimes even rage. What was it? What was happening inside? Our little boy didn’t lack joy or giggles, but it was as if, at the time, they were trapped inside.
At around 12 months, even before he had tubes and his adenoids removed, when Maxim wasn’t crawling or scooting we called for our first Early Intervention Evaluation. He wasn’t talking or babbling. He wasn’t moving very much, and he hadn’t yet pulled to stand, but he did rock. He loved to rock back and forth.
We had a team of individuals come in for his first evaluation. We made more doctors appointments with specialists, saw the regular pediatrician, and got second opinions. Everyone agreed, Maxim was definitely behind. He needed speech therapy, occupational therapy, physical therapy, and a special teacher to help him learn the things that babies learn.
“Why is this happening? Is there a reason he isn’t reaching milestones?” I constantly asked questions and looked for the reasons Max wasn’t talking or walking. “Will he catch up? Will he be ok?” It started to consume me. When we asked the experts we heard similar things, and totally opposite things, and everyone had an opinion that seemed more overwhelming and scary than the last. However, one thing that Everyone said when I asked if he would catch up was, “You need to wait and see.”
“Wait and see?” “Wait and see!?!?!?” My little boy was struggling and falling behind, and I needed to know he was going to be ok. How could I, “Wait and see!?”
I had heard words like, “global developmental delay,“ “sensory processing disorder,” “gross and fine motor delays,” “characteristics of autism,” and “severe speech and language delay.” Even though it is not politically correct to say, I had a doctor tell me when Max was just 12 months old that his findings were, “consistent with mental retardation.” How could this be?
The last statement, more appropriately referred to as an “intellectual disability,” was one that corresponded to Max’s inability to produce a normal amount of cholesterol. Max didn’t have any other syndrome or findings that tied his lack of cholesterol to a genetic or metabolic diagnosis, but it was low enough for the doctor to think there was something wrong with the white or gray matter, I don’t recall which, in Max’s brain. The doctor said, in different words, that an intellectual disability was a future possibility, but also maybe not, and we would just have to…”Wait and see.”
Will He Be OK?
After being told Max had a global developmental delay, possibly autism, and that he may also wind up having an intellectual disability, I felt terrified. Max started all the therapies and, at just 2 years old, got on a little bus to attend a special program for a couple of hours a day so he could learn and receive all the help he needed in one place. I couldn’t believe my baby was leaving me to go to “school.” He Loved it! I cried like a baby!!!
Up until this point Max had already struggled so much. He still never slept, and he cried much of the time. He did great in therapy and his special program, but at home he was melting down nonstop. It was clear I had a lot to learn, and Max needed all of our love and support, but I didn’t know at the time if that was going to be enough. I had been told to, “Wait and see,” but my heart just couldn’t do that. I needed to know his future was going to be ok.
Before I go any further, I want to point out that my description of our beginning doesn’t mean that children on the spectrum or with special needs aren’t happy. It doesn’t mean that a characteristic of autism is a lack of smiles or joy. I have heard many stories of children on the spectrum who were very happy babies. It just happened that for Max, his start in life was one of discomfort. Colic, belly pain, sinus and ear infections, lack of sleep, and sensory overload can make anyone unhappy. This can happen for kids whether they have disabilities or not.
But now I’m going to admit something really hard and vulnerably honest in case there is anyone out there like me who might be feeling like this or going through something similar. At the time, I wasn’t able to separate the struggle and pain Max was experiencing from the possible diagnoses of autism and developmental disability. In the beginning when I heard “characteristics of autism” I associated that with his challenges, and that made me Scared! Autism and disabilities didn’t seem beautiful and wonderful at first. It seemed uncertain and difficult. It seemed frightening and sad.
Back then, from working as a speech pathologist and having met so many wonderful people of all abilities, I knew each person with autism was different. I knew there were very happy children and adults with autism and disabilities. What I didn’t know was if my son’s experience with autism was going to allow him the same happiness. He was So different from any other child on the spectrum I knew. Maybe the autism and developmental disability in him would stamp out his light and we were destined to watch him struggle... and only struggle.
I’m not saying what I felt was right, but it is real. We hadn’t yet begun to experience the magic and beauty of seeing the world through Maxim’s eyes. I was so focused on the challenges that I was struggling to see the positives. His beginning was hard, for both him and for us, and we thought at the time that “hard” might be all there was for Max.
Regardless, I was certainly not going to give up on my boy, and so the next phase began. My heart was desperate for hope, and so I did what many of us do...I turned to the internet. My online search consumed just about every spare second of my days and my nights. When I should have been trying to fit in an hour or so of sleep, I was searching. I wanted to read, and see, and learn as much as I could about what our future might hold.
I found a lot of informational articles and materials about autism and disabilities. I read about the signs and characteristics, and I saw a few video clips of children suspected to have autism. I read informational things, and very scary things, and some positive things about children who started out with severe disabilities but with early intervention and therapy became high functioning and independent. But none of that was what I really wanted to find.
The biggest questions I had were, “If Max continues to have a very high level of need, if he continues to present with significant delays, will the hard parts and the fears I have for his future ever be softened by joy? Will he be ok? Will he be happy? And if it doesn’t get any easier is there anyone else out there who feels like I do? Am I the only one who is having a hard time like this?”
I knew a few families who had children with special needs, but they didn't seem to feel sad like I did. Their children seemed happy, whereas Max did not. That doesn’t mean they didn’t have similar thoughts, fears, or challenges, but at the time I was much too embarrassed to ask. Talking to them about it was admitting I was scared, and what if I was the only one? I sometimes thought I wasn’t strong enough or good enough to help our little boy, and that just made watching him struggle harder. I felt like I was failing. I believed in God and His help, so very much, but I didn’t trust myself, and that made it hard to talk to other parents.
So the internet would have to do. In my desperate search of the internet I needed to see families, lots and lots of families, imperfectly perfect like ours, raising children with disabilities. I wanted to hear them telling their stories, talking about the challenges, admitting to fears and questions like mine, and hopefully, optimistically, and confidently also finding the joy. At the time, though, I didn’t find what I was looking for.
Answers to my questions may have been out there, but I didn’t find them, and to be fair, I wonder even if I had found a few stories if they would have been enough. There was always a battle in my mind that made me wonder, “If I don’t find a situation exactly like ours, it might mean it worked out for them, but it still might not be ok for Max or for us.” I know this may make me seem over the top, and it's probably true that in general I am a little bit intense, (just a little ;0) haha), but it is honestly just where my head was at in those days.
The Answers We Found
Max was officially diagnosed with Autism when he was 3. Initially, some people disagreed with his diagnosis because he would smile at them and wave. Little did they know he had worked on that for about 2 years in therapy! Other people thought he couldn’t have autism because he gave hugs. But all of the signs and evidence otherwise pointed to the fact that he did, and we learned that battling misconceptions about his invisible diagnosis would be part of our journey.
It had been 2 years since Maxim’s early intervention evaluation when I had first heard global developmental delay, and that doctor’s appointment when I first learned that an intellectual disability may be in his future. Max had made progress, but he still wasn’t talking and his challenges didn’t go away. Thankfully, I had made progress too. I was learning how to better support Max so that he was less frustrated, and we had started to find joy as a family.
During the years in between then and now, the years where I had to wait and see….I eventually found the answers to just about all of those early questions that I had. It took time and perseverance, and the answers didn’t come all at once. They came slowly, some from personal experience and many from talking and sharing with others. Here is what I learned.
Max is in fact ok. He is better than ok, and he is very, very happy! He does have an intellectual disability and was officially diagnosed as developmentally disabled at age 8. He can talk but continues to have severe speech, language, and motor delays. He needs a lot of help to complete daily living skills and his sensory system is much different than most. And...He is still, ok! He is magnificently, joyously, and fantastically ok! Our family is ok too.
There is joy and also beauty, laughter, and love. Oh my goodness, there is so much love! The joy does in fact soften the hard edges that the challenges bring, and the challenges make the joy that much more precious and powerful. But I think it is the love most of all that gets you through one challenge to the next. It’s not just the love you have for your child, because that is there even in the midst of the darkest times and most overwhelming questions. It’s the love that you find in the most unexpected places as you travel on your journey.
There are struggles and hard parts, and sometimes they will bring you to your knees, but that comes with parenting whether your child has special needs or not. The hard stuff doesn’t last forever nor does it ever really disappear, but if you build your tribe, their love will help. “Typical” and “high functioning” don’t mean greater joy than "severe," and different is absolutely not less.
Last, I learned that while perseverance is necessary, it’s ok to wave the white flag and say you are hurting or scared. Please don’t do what I did and let self doubt or fear stop you from reaching out to talk to others! Our lives improved, both Max’s life and our family life, once I started talking and sharing our journey. The more you talk about your experiences and connect with other people, the less alone you will be. They say it takes a village...and if you want to, we hope you will be a part of ours.