Not So Normal Anymore

I often wonder what the last few years would have been like if our youngest son Leni hadn’t been born with ADHD.

Do I feel bad for even thinking this?

Yep, all the time but it’s human nature to second guess things and to wonder about the what-ifs, or at least that’s what I tell myself to get by.

Leni is the youngest of four and there was no indication at all that he was different until he turned 4. Up until then, he was considered cheeky, funny, and somewhat of a class clown- an energetic free-spirited child with a big heart.

I often reflect on my time at home with him when he was little with affection because he was so easy to be around. Our days were spent at the park, on walks, shopping, and crafting, and the time spent just cuddling on the lounge will forever warm my heart. Leni was so affectionate, always planting a kiss smack bang on my lips and wrapping himself around me like a baby orangutan.

At the age of 4 my husband and I started to get pulled aside at daycare:

“Leni was very cheeky today; he had a disagreement with another child”

or

“Leni wouldn’t concentrate during school readiness sessions”

This was all new because Leni’s behaviour at home was very different from what was being reported whilst at daycare, so whilst we always took the feedback on board, we would also brush it off thinking that he was just bored and ready for big school.

There was no hesitation at all from Leni about starting kindergarten when the time came. He was so excited about going to big school and being close to his older brother. He was placed in a class with a teacher that we thought was nurturing and gentle, so the year started off well.

Things began to change about a week into third term after Leni’s teacher started to pull me up at school pick-up every day. Her biggest issue with Leni was his inability to sit still and remain on task. She would say that he was disruptive and that he would distract his classmates all the time. Leni would say that his teacher didn’t like him and was picking on him. It was hard to not feel like she wasn’t singling him out, but we were not ignorant enough to think that he was completely innocent.

Our biggest concern was the fact that his relationship with his teacher had completely crumbled. He no longer felt safe and protected in her classroom and perhaps because of this, he no longer wanted to go to school. Other things that started to concern us too- Leni couldn’t get out of class fast enough when school finished, and if an incident occurred in the playground even though Leni may not have started the issue, he was the one that was always singled out and blamed. As a result, Leni’s confidence took a massive nosedive and the school, whilst happy to highlight all the negatives, did very little to support us at the time.

A friend suggested seeing a child psychologist which we didn’t hesitate to do and upon meeting with myself and Leni she suggested that it was likely Leni had ADHD, but she couldn’t be 100% sure. She referred us to a clinic elsewhere for a full assessment and after a full day of testing which included meeting with another psychologist, dietitian, pediatrician, and hearing specialist they were able to confirm that our little Leni did indeed have ADHD which was, in their opinion, affecting his learning at school.

Let me be very clear now that I don’t like labels, but I do like having clarity and direction which is what this diagnosis finally provided. Knowing the outcome was the easy part but deciding where to go from there was the hard part.

Do we medicate, do we not medicate?

When your child is only 5 it is an incredibly daunting decision to be faced with. What didn’t help at the time was also the stigma associated with ADHD and we have those horrible A Current Affairs news stories to blame.

Whilst Leni continued to be ok at home and of no concern to us, we were overly concerned about him being left behind in school especially if he continued to be taught by teachers who were so focused on what he wasn’t doing well instead of helping us come up with strategies to assist with his learning.

By the time the assessment had been done and we had decided to pursue medication, Leni was in Grade 1 and thankfully he had a teacher that we knew well and who was willing to work with us to help.

Medication is a very tricky path. It can take a long time to not only find the right dose but to find the right med. The one he started on turned him into a zombie and killed his appetite. I would be waiting outside the school gates to pick him up and when he was dismissed, he would look at me with a blank expression on his face and didn’t ever smile but according to his teacher, he was great in class and very focused.

We went through a very big move halfway through Grade 1 and relocated to a new town which meant a new school for Leni and his brother. Initially, Leni didn’t want to go to his new school. I would pull up to drop him off and he would get out of the car and run away from the school. There were many tears not just from Leni but from us as well.

Eventually, he started to go without hesitation, but he wouldn’t eat at all throughout the day and would then come home and have a massive crash at 4pm every day. Not only was he hungry but he was like The Hulk trying to understand what his brain was doing whilst the stimulant left his body.

It was exhausting, scary, and downright painful to watch. Everyone would tiptoe around him to avoid setting him off and we finally reached a point where we couldn’t continue. There were days when I wanted to pack a bag and run, trust me when I say I almost did a few times. Instead, after having balls thrown at my head and being kicked or pushed, I would collapse on the bathroom floor in tears until eventually, I had to get up and make dinner or run errands.

I reached out to his pediatrician for guidance and advice, and she suggested adding a new medication into the mix. The medication prescribed made Leni suicidal within a week and after hearing him say he wanted to end his life and then watching him bang his head against a wall we stopped that medication immediately. Seeing our son in so much pain mentally was heartbreaking for us.

Never have we felt more alone or misunderstood, and I am certain Leni felt the same.

Knowing that the med combination hadn’t worked for us the pediatrician suggested moving Leni onto a slow-release tablet and it was with this medication that we noticed a change for the better in him. He was no longer zombie-like and gone were the horrible afternoon comedowns. Unfortunately, as is the case with many ADHD medications they can be outgrown so we managed well on this for around 6 months until a growth spurt identified a need to change things up again.

Many parents who have a child with ADHD will tell you that starting a new medication is like starting from scratch all over again but this change in meds also worked well for Leni and has been working now for close to a year.

We are starting to notice small changes again which are indicative of a growth spurt, so I have reached out to his doctor once more to find out where we go from here.

This blog is a way for me to share the ups and downs of raising a child with ADHD.

So far on our journey, one thing is quite clear and that’s how few services and support networks there are out there even though so many children are now being diagnosed with the condition. One of my all-time favorite authors on the topic is Dr. Russell Barkley. If you have a child with ADHD, you need one of his books and if you don’t have a child with ADHD read one anyway.

This is not the journey we chose but it is the one we are on and sharing it just seems like the best way for me to cope with it.  

This is just an appetizer to what life for us is like. Like most parents, we are doing the best we can and I plan to share our experiences with you the reader, so you don’t feel so alone. I am by no means an expert on the topic, and I don’t have all the answers, but I still want to share our experience because I am sure there are other parents out there who just need to know that what they are going through is normal or that some families have it harder than others.

This is where my blog begins…