The Rainbow

The blunt truth is – and yep, I’m gonna say this out loud -I have been struggling terribly as a mother. For the longest time, I honestly thought I was screwing it all up. I even came to a point where I sincerely considered leaving my family because I thought I was only having a negative impact on them. I simply cannot describe how heavy that feeling is to carry around on your shoulders day in and day out. The thing about me is that I may appear weak but I am a very strong person and tend to take action and try to find solutions. Because of this, I worked my butt off on myself and my own downfalls. That is a lifelong journey – one with many ups and downs – but one that I work at wholeheartedly. Still, no matter what I did, I couldn’t seem to quite grasp it as a mom and I really struggled with finding balance with kiddo. I took my feelings of failing as a mother to heart and really struggled to understand when and how I had become such a miserable human being that kept feeling overwhelmed, impatient, and disconnected from her kid. I had always loved kids and never thought I’d have such a hard time with being a mother. 

Everything was a fight and that left me absolutely drained. Simple things were taking so much effort and energy that I was struggling just to get through the day. For a long time, I thought I was too harsh and not soft enough so I tried really hard to flip it and soften up. That didn’t work. Then I thought perhaps he needed more discipline, especially with him being in his ‘terrible 2’s’ and testing boundaries. It seemed logical at the time. Things just kept getting worse. There was something I was missing and I couldn’t quite tell what that was. When kiddo had his last meltdown and I literally needed to restrain him for fear of him hurting himself or me, I was heartbroken and seriously questioned what I was doing wrong. The nagging feeling that perhaps there was more to it persisted and I started looking into it more and more.

Slowly but surely, things started popping up and I started feeling more and more like I was right. Slowly, I started pointing some things out but people assured me toddlers were silly creatures and that I was doing just fine. This only reinforced my negative feelings about myself and I felt lost in a world I expected to do perfectly well in. Being a first-time mom, I had no idea if I was being overly concerned and seeing things that weren’t there, or just not handling things well at all. Doubting myself was so much easier than trusting myself. I decided to sit on my concerns and trust that, if I was right, things would come up in their own time.

 When he had his 2-year appointment and we were told he was speech delayed, I wasn’t at all surprised. I expected it from the very start as he had always been a quiet child. Still, at that time, he was so busy with other things and both his parents are quiet being so I figured it was a natural thing for him. Plus, he was just 2 years old – still plenty of time for things to change. I knew all too well that kids do things in their own time. Heck, mine was running before he was a year old and all I wanted was for him to slow down some! We weren’t worried but I did want to stay on top of it since it started being an extra source of frustration from both kiddo’s end and mine. We certainly didn’t need more frustrations. We accepted the referral for the speech therapy in order to facilitate using it if we needed it and he was placed on the waiting list for a special language program as well. Kiddo had just started preschool and, since he was struggling with adapting to that, we didn’t want to bombard him with more. We were also thinking that preschool might help him advance with his speech so we allowed him extra time to see what would happen. On that front, after 6 months, we had seen no progress at all. If anything, we were seeing regression and the screaming had only become more frequent and intense. We started the therapy with the full confidence that it was necessary now. It wasn’t just his speech, it was his communication as a whole and the frustration it was causing him directly. Instead of trying to talk, he’d only scream. It seemed the tantrums were never-ending and people laughed at my frustrations saying “Welcome to the terrible 2’s. If you think, this is bad, just wait til you hit the threenager stage. Oh and wait til you have an actual teen… HA!” I tried to keep a sense of humor about it all - if you don’t laugh, you cry – but my misery grew deeper and deeper. If I couldn’t handle motherhood now and things could be expected to get worse, how the heck would I manage? Of course, I love my child to death and am very protective of him but, truthfully, I started reconsidering this whole motherhood thing and I started crying with relief at the fact that I hadn’t gotten pregnant when I had hoped to. I found myself increasingly put off at the thought of another child since I was obviously failing at this whole motherhood thing. Instead, I found myself considering a return to work more and more and trying to redeem myself on that front. Luckily, on that end, I seemed to be having more success so that brought me some well-needed relief. Plus, with a bit of work, it allowed me some hours to myself where I could get away from kiddo and breathe a bit. I only grew more frustrated with myself when I realized I even felt that way…

Time went on and the negative feelings only grew. I couldn’t shake the feeling that kiddo needed me now more than ever but I didn’t know how nor why. I struggled to juggle that feeling with activities and things that I wanted to be involved in and felt like I needed to get my priorities straight. There would be time for other things later but this would be the last year to give kiddo my full attention before he’d start school and I wanted to be able to offer him that. Everything fell into place and I knew I had made the right call.

As the weeks went on, the kiddo’s teacher started making little comments to me about how he was still struggling with certain things at the preschool. On the other hand, she kept reassuring me that he was doing better with us leaving him there so we had progress there at least. We were a bit sad to hear some of his struggles, mainly being that he refused to play with other kids or participate in the group activities but they respected that and allowed him to do his own thing and he was fine that way. The preschool we had hoped would provide him with lots of fun suddenly seemed like an expensive place for him to go play with cars on his own but we figured he just needed more time. We’ve also been annoyingly sick on and off since December as well and that seemed to be bringing us down a lot so we figured we were just having bad days and the better weather would bring some extra relief. 

With a little time, his teacher and I started talking more and more and we came on the chart subject and how I had been trying to use that to help facilitate things. This immediately got her attention and she asked me how I had gotten started with the chart so I went on about the struggles I had been having with him transitioning and how he really struggled with routine changing etc. I explained how everything was a struggle and how he had a need for things to be the same way each time and how the chart helped with preparing him with changes. I also explained how it backfired because I am a terribly disorganized person and I am not used to living in such a way. She then went on to explain she had seen the same issues with him at preschool with the transitioning and other little things. She admitted she had been sitting on her concerns for a little while since she wanted to look into it some more and having something more tangible to approach me with. I admitted to her that I had been sitting on those details myself as I didn’t want to make anyone go looking for things. Suddenly, the pieces were falling into place. It was at that moment that she ventured out of her comfort zone and risked the blunt question:
 “Do you see it?”

I did.

I knew exactly what she was asking. So we talked and talked. I got to ask questions and find out more about the things I wondered about and it felt so good to have that moment.

“When you are ready…” She said.

We left it at that. 

The mix of emotions was incredible after that. I allowed myself to venture out to a few friends who had more experience to help me sort all my thoughts. I didn’t know what to do with myself. Part of me felt relief but a major part of me felt fear. Fear of being right and having done wrong all this time, fear of being wrong and having sucked at it all this time, fear of what it all meant, etc. etc. 

His next visit to the preschool was a rough one. Kiddo was in his shut down mode when we dropped him off and I only wanted to bring him home. With some reassurance from his teacher, we left and hoped for the best. He did okay but he really was pretty much shut down that day. His teacher let us know that he had stayed alone, lining with the cars up as usual.  

A week later came the hair cut. Having prepared him for several days in advance, I thought he’d do okay with it. Of course, when I got there, he wouldn’t allow me to take him directly there. No, instead we had to go to the other stores as usual first. Luckily, I had allowed us enough time for that. I bought him an eraser just because it was shaped like a car and Thomas the Train books just to have something new to distract him from the haircut. However, the minute we put him in that chair, he went into full shut down mode. He clutched his car eraser tightly but there was nothing else from him. No sound, no eye contact, nothing. The hair dresser kept complimenting us on his behavior and how he was so easy. She kept saying she expected it to be much harder since kids his age like to move etc. The whole time she was talking, I just felt absolutely disheartened. While I could 100% understand the relief of not having to struggle with him and while I certainly felt relieved that he wasn’t having a massive tantrum like he has had in the past, my heart ached seeing him. After his haircut, I did the rest of the routine with him, thinking it would get him out of his shut down, but it had no effect. The orange juice he insists on having every time we step foot in that mall brought no comfort. He drank it in silence, without his usual excitement. The African grey he insists on waving to every time we shop was stared at blankly for a brief moment and then he simply walked away. I put him in the Babboe and he just stared up ahead. Once we got home, I got him out and he headed towards his sand. I seized the moment and brought out his trucks and I finally got a smile and a thumbs up.  His teacher saw his hair and commented on how much she liked it but she caught the look in my eye and asked me what was wrong. I told her how he had acted and then I caught her eyes tearing up. She understood. That’s when I broke and we ended up crying together. She put her hands on my shoulders and looked at me… 

“It’s time, Mama… Trust your heart, you are not wrong. I’ll be with you.”

Taking a deep breath, I put in a formal request to have Alert4you come in to check him out. Alert4you is a program that works with the preschool as well as Child Care Services to observe your child at the preschool (or at home) to see if there is anything worth having evaluated. I was to write a list of concerns so they could see if they could spot anything. I cried and laughed while I wrote it, doing so while he was at preschool so I could just focus on getting it done. By the time I was done, I had 4 pages worth of concerns. Oops. I added a summary version to avoid sounding like a crazy person - not that it would have helped - and handed it in when I picked him up. Just to do it on purpose, his teacher told me he had had a good day and he was very open and smiley. I guess this had been supposed to comfort me but it had the exact opposite effect. Suddenly, I doubted everything and I was too late to get out of the request. I felt overwhelmed by fear, suddenly realizing that I could be wrong and wondering what that said about me as a mom and as a person. The next week or so went by very slowly and the stress was almost too much to handle. I tried to keep my emotions at bay and just got into a protective mode while I tried to deal. We had an appointment with the preschool to chat about things and when the Alert4you would come in, etc. They expected them to come in after the May vacation. 

On Thursday, I received a message from his teacher asking if I could bring kiddo to the preschool on Friday. The preschool manager wanted to observe him so we did that and we were to have our meeting with them afterwards as expected. Kiddo had woken up in a great mood that morning and I was really worried that he would make me look like a crazy person just like kids tend to do when you take them to the doctor’s… I was terrified. Terrified I would lose any credibility, and just basically terrified of everything. The vulnerability you feel from exposing yourself as a parent that way can be very difficult to describe…

On Friday, we sat down with the manager and his teacher and the whole ordeal was over. My fears, my concerns, my doubts, everything was validated.  The manager had witnessed a lot of the behaviors that I, as well as his teacher, had been concerned about. I thought the next step would be for Alert4you to come but the manager was stepping in and requesting help directly instead. Meaning, she had seen enough to put that request in. With my permission, she put in an urgent request for a special assistance at home to help me with things here while we deal with sorting things longer term. She also put in an urgent request to kiddo’s healthcare providers for a full evaluation and diagnosis and then she put in a request for the preschool behavior consultant to come evaluate him in order to make a decision about the best plan of action in terms of preschooling. Meaning, she was requesting a decision on whether he should be moved to a fully specialized preschool or move to a tandem system which provides both specialized as well as mainstream care. Both have waiting lists so she also offered a possibility of having him stay where he is at the moment but with a special aide if he cannot be put into specialized care quickly enough. Clearly, it has already been decided that intervention is necessary.

I looked at him and I cried. I could hardly speak. All that time… It wasn’t anything I had done or hadn’t done. All that time, it just simply was… 

“You’re not alone anymore, Mama. You weren’t wrong, Mama.” 

And on Friday, I felt the weight of the world lift off my shoulders. Suddenly, there were answers and there was help. There were professionals who had worked with children and parents for years sitting across from me who were validating everything I had struggled with. 

While the true diagnosis from actually qualified medical personnel still needs to be given, I know in my heart that kiddo is autistic - not that there is anything 'wrong' with that. I fully expect it. I know in my heart that all the pieces fit. I know in my heart that I can trust this – the bond is there and has always been. The bond was there from the day he was born and I sobbed in my hospital room because I couldn’t get to him and I KNEW it was him crying from the NICU. The bond was there when I furiously took him to the ER to have him checked after having been dismissed as a stressed new mom because I KNEW he was hurting. The bond was there when I found the cause of his reflux despite all the other caregivers telling us we were wrong. Gosh, how much longer would the poor child have suffered with reflux if I hadn’t listened to myself then. 

My heart has always known. 

Someone told me to allow myself time to ‘mourn’ but I haven’t lost anything. I don't see this as a bad thing or as anything necessarily 'wrong'. All I did was gain. On Friday, I gained validation, insight, new perspective, and allies. I gained new knowledge that I was able to apply and gain from immediately. I gained strength as well as a new sense of direction. More importantly, I also gained some extra respect for myself and I am learning now to be kinder to myself. One day, I will gain the knowledge that I don't muck up nearly as often as I think I do.

I am okay with this. I am okay with knowing I need to relearn some things. I am okay knowing I have a lot to discover and navigate. I am perfectly okay with who he is. Sure, some things are tough but now I know why they are this way and I will learn how to deal with that better. I have absolutely no intention of ‘fixing’ him. He’ll always be who he is but, just like every other human being, there are some things he struggles with that he could use some help with. 

The only thing that has changed in all of this is me and my own understanding.

I’ll be that mom whose kid freaks out in the grocery store. Every. Single. Time. Maybe you’ll be the person that sees a difficult kid who can’t obey when his mum calls him to her or tells him to keep walking. I’ll be the mum who now knows he’s not having a tantrum, he is shutting down. I’ll be the mum that knows that when he slumps to the floor, it is not to make it more difficult on mommy to pick him up and make her look stupid in front of all the people staring, it’s him ‘grounding’ and needing to shut down from all the input bombarding him. You might be the person who will think I should discipline my kid so I wouldn’t have a ‘brat’ on my hands. I’ll be the mum who knows, truly knows, that discipline rules our lives and that my kid never was a brat to start with. You might be the person who thinks I am a horrible person because my child screams for what sounds like forever. I’ll be the mum that hates the screaming even more than you do and tried everything to stop that child from screaming but that has come to understand that the easiest and quickest way for it to stop once it has started is to do nothing.  You might be the person who thinks my kid is a spoiled brat because he has a massive tantrum if the store runs out of juice. I’ll be the mum who understands that that juice is the ONLY orange juice he will drink and that it is against the rules in his understanding for that juice to simply not exist in that moment. You might be someone who thinks I allow my child to be king by allowing him to set all the rules by making everything revolve around him and his needs. I’ll be the mum who knows why she has to be so strict with routine and the consequences it has when things are changed. You might be the person that thinks you can do better but I’m the mum and I know my kid better than anyone else ever will. I cannot blame you for not knowing, for assuming and not understanding. I simply cannot expect you to grasp this until you’ve experienced this for yourself.

I know -  I was you once…

I’ll look at you and I'll smile.

I’ll even forgive you for being ignorant.

But I won't envy you because I wouldn't trade my kid for anything.

I look back at that moment in the kitchen when I looked at my partner after a particularly bad moment and said, “Gosh, I have so much respect for parents that have kids with autism. I don’t think I could do it, I seriously don’t.” and all I can do is laugh. 

We got this. We always did.

And, in case I had any doubt left, I have found this...

It couldn't be more perfect.

I've always been all about rainbows.