I just finished saying a quick prayer before starting this post. The title alone can stir up strong emotions in so many people for different reasons. It stirs up strong emotions for me. I ask that you read the whole post before passing judgments of any kind. My goal is to provide parents who are faced with the decision to medicate their special needs children an open and unbiased reference, with support. Medicating a special needs child is never an easy decision.
Why would you choose to medicate your special needs child?
2012-I can still remember it as if it were yesterday. Bulldozer and I were in his developmental pediatrician's office. This was his third appointment. I had given her a write up of Bulldozer's progress, my concerns, his behaviors, etc. The last six months had been particularly rough with Bulldozer. He had been diagnosed with autism in August of 2011. All of his therapies were now in place. He had speech therapy three times a week, occupational therapy two times a week, and physical therapy one time each week. Bulldozer was in a special education preschool class, attending five days a week. His teachers and therapists had sent his IEP evaluations and quarterly reports with us. Still, his ADHD tendencies, lack of safety awareness, constant need for visual stimulation, and inability to speak more than two word utterances were leading to some extremely scary and dangerous situations. Mind you, at the time, Bulldozer was only three years old.
The doctor read through the information the school sent and what we had prepared. She looked at me.
"Do you think you can keep Bulldozer safe?"
I was taken off guard by her question, and honestly a little scared, and a tiny bit insulted. What did she mean? Our home was baby proofed and toddler proofed in every way imaginable. If it wasn't before, it was now, due to the crash course Bulldozer was giving us, as parents of a special needs child.
Our doctor felt it was time for medication. Even with 100% adult supervision, and a one-to-one at school, Bulldozer's impulses were so quick, it was taking less than a second for him to get himself into dangerous situations.
I cried. Thankfully, I trusted our developmental pediatrician. My husband and I went along with a two week trial. Bulldozer was prescribed a medication that would work instantly. We were warned the first few days would be rough, which they were, but after that, the medication should work well for him.
During those first few days I cried a lot. Bulldozer wasn't himself. I felt ashamed and embarrassed as a parent. What type of parent has to put their three year old on medication? But then, after about a week, Bulldozer transformed. The doctor had said the medication would allow him to tell us what he was going to do before he did it, so we'd be able to have time to respond to him. I didn't know that would really happen. It was as if overnight Bulldozer learned to speak 4 and 5 word phrases. He did stop and tell us what he was going to do before he did it. Not only that, his dangerous behaviors practically went away. Bulldozer was doing amazing.
Today, Bulldozer remains on the medication. He's still doing absolutely fabulous with it. I could have never imagined that medication would have been the answer we were looking for. In Bulldozer's case, it was.
Self Injurious Behaviors
2012-Princess suffers from Reactive Attachment Disorder (RAD) and Post Traumatic Stress Disorder (PTSD). At this point in time (she was three), she wasn't doing the greatest. She had started hurting herself in multiple ways. One particular day, her self injurious behaviors really scared me. I called both our pediatrician and developmental pediatrician to report the incident. We were in our developmental pediatrician's office less then one week later. Once again, I was faced with the decision to medicate another one of my children.
This time I felt more prepared. I felt different. Princess was adopted through foster care. She had been removed from a very abusive home. All of her diagnoses were 100% preventable, if it hadn't been for the trauma she'd experienced before she came to us. I wanted to do whatever I could to help her feel safe, so she'd stop hurting herself. If medication could help her like it helped Bulldozer, I was for it.
Little did I know, I was entering a completely different type of situation. Finding medication that would help her would be a slow process. The medication would need to be introduced in a small dose, then six week later, we'd be seen again. If all was going well, it would be increased. But there was a catch. If the medication was increased too much, which we would only know through trial and error, Princess' behaviors could become worse, or new ones could emerge. She would become activated. I was nervous, not only for what might happen, but the thought that getting Princess help could take so long.
Fortunately, after 3 months, we found the correct dosage, without her being activated. The medication helped Princess. Her behaviors became less severe. They didn't go away, but it seemed that her anxieties were more manageable. This helped all of us breathe a little bit easier.
Functional Daily Living
2013-Dinomite, autistic like his brother, was the last to try medication, at the age of six. It was suggested because he could not function and cope in daily living situations, especially those that were academic. His meltdowns were severe, sometimes lasting for hours. Dinomite is an intense kiddo to begin with, but add extra anxiety and stress... He's like a volcano that never stops erupting.
In all honesty, I hadn't even thought about medication for him. It wasn't until I was in the office of our developmental pediatrician discussing the behaviors with her, that I realized we were at that point. Seeing how medication had helped Bulldozer and Princess, I was on board to try.
Just like Princess' medication, we would start out slow. Dinomite was excited to take his medication. He wanted relief from anxiety just as much as we did for him. It seemed that medication started helping him much faster than Princess' medication. He was able to complete his school work without tears. There weren't as many meltdowns. When there were, they weren't as severe.
Six weeks later we increased the medication, as we had been instructed. It only took a week to see, that the increase was doing more harm than good. Dinomite became physically aggressive. We immediately cut the dose back down. The transition back to the initial dose, took a week. It was ROUGH. We then took him off the medication all together because the negative effects of the medication outweighed the positive.
2014-We're at our regular three month check ups with the developmental pediatrician. (Once the kiddos started meds, instead of being seen every six months, they're seen every three months.) I had significant concerns about Princess. This winter was extremely difficult for her.
Among other very concerning behaviors, Princess was not sleeping. She'd be up for hours in the night, afraid to sleep until it was day. Her behaviors were more severe during the day because of the lack of sleep at night. I knew she needed more medication and I wasn't afraid to ask for it.
There were two routes we could take. We could give her medication to help her sleep, and then possibly lessen the behaviors during the day. Or, we could increase her anxiety medication and hope that we didn't reach activation. We decided to try the sleep medication. Within days, we had a completely different little girl. She's still struggling, but not nearly as much as she was. It's amazing what a good night's sleep can do.
2014-Bulldozer has made significant improvements academically, however, he is still very delayed. Bulldozer is unable to compete a task without my husband or myself working with him one-to-one. The developmental pediatrician recommended we try a booster, a pill that might help him during learning activities. As she explained how it worked, she warned that it could have the opposite effect on Bulldozer. Instead of helping him focus and complete tasks on his own, it could make all of his behaviors worse, magnifying the issues.
The day we tried the new medication was a good day for Bulldozer. That was until about 30 minutes into the new medication trial. The doctor said I would be able to tell immediately, and she was right. Bulldozer was awful. It took all the energy I had in me not to cry. The pill would last four hours and then it would be done. Minutes seemed like hours. Bulldozer had no concept of what he was doing or how his body was moving. Over the course of two hours he accidentally hurt himself twice. He could not complete one learning time activity. I ended up giving him the iPad and sitting him on the couch for the rest of the afternoon, just so I knew he'd be safe, and doing something he enjoyed, until the medication was finished running it's course.
After this trial, I decided that I didn't want to try any other medications for Bulldozer right now. Instead I wanted to try some sensory and behavioral treatments. And it just may be that Bulldozer will need a one-to-one aide all the way through school. We'll just have to wait and see. I would to have loved to try holistic alternatives, but Bulldozer's food and environmental allergies prevent us from doing that.
2014-Dinomite's eating habits were discussed at great length during this appointment. My husband and I were becoming increasingly alarmed that the few foods he would eat, he now refused to eat. Dinomite was living off of peanut butter and jelly sandwiches and cereal. He would not eat anything else.
The doctor mentioned we could try another anxiety medication to the medication. It would be a slow process, but if it worked, it could improve his anxieties to the point that he would be willing to try new foods.
We had to first wean Dinomite off of his old medication. This took about a week. It was at that point we realized, that even the small dose of the first medication was causing Dinomite to be more physical. Here we thought he was just in that phase as a little boy, but that wasn't it. The minute he was medication free, he was the calmest kiddo ever with his siblings. With that said, his meltdowns were three times more severe.
After approval from the developmental pediatrician we started the new medication. Within a week, Dinomite was a completely different kiddo. Not in a good way. He became incredibly physical and aggressive again. His meltdowns were the most extreme I had ever seen. Dinomite was biting people on a daily basis. I called our developmental pediatrician's office. We were advised to take him off of the new medication immediately. He had been activated.
The doctor wanted to see Dinomite again in the next week. It wasn't clear what path should be taken because any path would be controversial. I asked if we could just take a break. I explained what he was like without any medication, and I wanted to see if he still needed any at all. Perhaps we could try sensory and behavioral methods first. My request was met with approval.
I will always be thankful for the medications that have worked for my kiddos. I will never forget how scary the experiences are when they didn't work. At times, it's a matter of choosing which behaviors and/or side effects are worse. For Dinomite I had to choose between aggression and anxiety. In Bulldozer's case, it was a matter of slowing down his academic journey to better fit his needs. Thankfully we have a wonderful pediatrician and developmental pediatrician whom we have an amazing relationships with. The kiddos know them and love them. We see our developmental pediatrician every three months and know we can call sooner if we need to. She is always honest with us. Our pediatrician is just four blocks away. When he doesn't see us or hear from us, he's been known to call and check on us. My husband and I have always been honest with our doctors. We're made aware of all of the possible negative effects of each medication going into trials. I know our doctors wouldn't recommend something unless they thought it was needed. Even then, we are always given a choice.
You always have choices in the matter of medicating your child.
When considering medication for your child, ask yourself these questions:
1.) Are the behaviors or health issues severe enough to warrant the medication? What will happen if you don't try the medication? Is your child's life at risk? Is the life of others at risk?
2.) How will medication benefit my child? When faced with the decision, take into consideration why your child may need medication. If it works, will the child function better in their daily living? Will it effect their academic performance, eliminating negative behaviors in the classroom?
3.) Are there any other methods you haven't tried and are open to, or prefer to try, before starting medication? Have you studied the sensory needs of your child? Is your child receiving therapies to help in troubling areas? Speak with your doctor and discuss these options.
4.) Are you aware of the possible negative effects the medication may have on your child? Make sure to fully understand what those may look like, so if you do see them, you can get help right away.
5) Do you trust the doctor that's prescribing the medication? Is your child being seen by a developmental pediatrician or specialist who specializes in the area of treatment you need? .
No parent wishes to medicate their children, but when the situation arises, it's always important to be prepared and open for what may come. You are still the parent who knows your child best. With help, support, and the proper medical attention for your child, you can become even greater!
What has been your experience, when choosing to medicate your special needs child?
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