I’ve been really indecisive about writing this blog, but today have realised that it would almost be hypocritical not to since I am attempting to give a true account of a family raising an autistic child. My husband and I are fully committed to giving our son the very best life possible, where his talents can flourish, his creativity grow and above all be proud of his autism. However, this is blog concentrates on a very emotive subject. While I encourage debate, questions and constructive criticism, I will not tolerate aggressive comments or blanket statements regarding the negative connotations associated with medication in general. Please read this blog with an open, and above all calm, mind and feel free to give any feedback in a constructive and polite manner. Aggressive comments or statements will be deleted if I feel appropriate. As you may have guessed, this blog is about medication and a decision that we as a family have had to make.
This is without doubt the hardest decision I have ever had to make surrounding kiddo’s health, education and care. The choices of educational institution, therapies and enabler have so far been seemingly easy. I know that now because even though the option of medication has been hanging in the air for some time in this house, only now do we have to decide if it is the right thing to do by our son.
In particular, we are talking about medication to help the kiddo sleep. As regular readers will know, the kiddo has a diagnosed sleep disorder (Delayed Sleep Phase Disorder), a disorder diagnosed when a person is unable to adapt their sleeping patterns to the 24 hour clock by which the world operates. We have all experienced considerable sleep deprivation for almost two years now, the last 9 months in particular have been exceptional and neither us as parents or the kiddo are coping on such little sleep. Sometimes he will only sleep for 3 hours in 24. Now the cause for this sleep disorder is still being discussed. We have seen specialist sleep consultants to check for any breathing or oxygen related problems which may be waking him, but the consensus is that there is no problem here. Therefore, kiddo’s lack of sleep may be down to either his ADHD (a chemical imbalance in the brain) or his complex Sensory Processing Disorder (where the body is unable to balance itself in a sensory manner and the body and mind is prevented from relaxing into a sleep induced state).
Recently we attended a sensory clinic assessment at Harley Street, London. Our hope was that the kiddo’s sleep could be improved by one hour of sensory therapy every day. This meant incorporating activities involving trampolines, swings, exercise balls, body brushes etc. into kiddo’s play routine. Whilst we have seen significant gains to kiddo’s hyperactive behaviour during the day (he’s happier, more focused and less prone to emotional meltdown) and kiddo is keen to play on his therapy toys, the same sleep pattern has remained at night, leaving all non-medical options exhausted. And yes, we have tried massage, aromatherapy, melatonin, white noise, music, weighted pillows, a tight duvet, lights on, lights off, herbal remedies and pretty much anything you can think of, so we wouldn’t have to go down this route of medication.
Yet here we are. At a crossroads. The time has come to make a decision. This is not a decision we ever wanted to make. We so hoped for a resolution which did not involve medication. Kiddo is not happy to stay in his room unaccompanied whilst awake and I’m damned if I’m leaving him in there alone. He also requires sensory therapy at night to help alert his senses and prevent him from self-harming so that he doesn’t run into walls, head bang on furniture or scratch his face. He also requires a minimum of one nappy change a night and should we leave him after he has been in our presence, this distresses him even more and it’s a sight and sound I cannot bear. In short, he needs us. It is our job to keep him safe, to keep him calm and above all to make sure he knows that he is safe and loved. And that’s why this decision is so hard.
I recently wrote a blog on what it really means to live with chronic sleep deprivation. After years of minimal disturbed sleep my body is physically crumbling, and my mental health is deteriorating. I am struggling and finally some professionals saw it. When they mentioned that they would diagnose sleep medication for the first time (other than melatonin), inside my head I jumped for joy! It felt like this has been a losing battle for years, and finally, FINALLY, someone had listened. I walked away from the appointment with a spring in my step. Maybe I would be able to exercise again? Or socialise? Maybe I would even have a social life! And that’s when it hit me. The only person I was thinking about was me. Because yes, I needed kiddo to have this sleep medication. But did kiddo really need it for him? Was this the right thing for him? Because this next line I will type will be the most important part you read of this blog.
This is not about me. It’s about my son and what is best for him.
So, I started asking myself endless lists of questions, questions that once I had found the truthful answer would determine whether I was doing this for him or me. And the questions went a little something like this…
Am I happy with the amount of sleep he currently has? Well it varies to be honest. On a weekday, no. Why? Because he must get up for school, and by 4pm he is really struggling. He is not able to concentrate, and he becomes easily frustrated and upset. I’m not just talking about a typical ‘witching hour’ here, I’m talking emotional upset that leads to self-harm and meltdown. He’s in emotional agony and there is just nothing I can do about it.
Will the medication give him side effects? No, it shouldn’t do, certainly not at the right dose.
Does he need to be on them forever? No.
Can I take him off them when he is old enough to cope with less sleep? Yes of course.
Can I take him off them at any time? Yes.
Can I trial them under supervision of a medical professional? Yes.
Would I take sleep medication myself? (because I’m not doing anything to my son that I wouldn’t do to me). Yes. In fact, I often do as my body clock is so disrupted from such little and infrequent sleep over the years I need it to help me sleep when the kiddo does.
Has sleep medication helped me? Gosh yes. They have really helped me. I was diagnosed with a severe anxiety disorder at the age of 17 by a Psychiatrist. I’ve had 17 years of therapy to help me get to where I am today and alongside it I have taken medication which has helped calmed my nervous system. But there is one massive difference. I was able to make a conscious decision to take them, and kiddo won’t know if he is taking them or not. The responsibility lies solely on my shoulders because I can’t ask him, I can’t discuss it with him, I can’t explain it with him. Oh, how I wish I could.
After these questions I asked myself one simple question. Do I need the sleep that badly? Thinking back through all the physical symptoms I listed in my previous blog and how I am becoming more ill day by day my answer would have to be yes. I’m taking social issues out of this for now, because I am a mum and it’s my job to put my child first. At the moment though I am not the mum he needs me to be. I’m so tired that there are days where I daren’t drive him to school (which he loves and is thriving at). There are days where my mind is not strong enough to argue his case to professionals and ensure he receives all the support he requires in order to flourish in life. There are days where I cannot concentrate on the play time he asks of me (which isn’t much anyway) because I’m so tired I cannot teach him what he wants to learn. Ultimately, I am not the mum he needs without regular sleep.
I wish I was. I wish I was invincible. I wish I was immune to illness. I wish I was a machine that could keep going forever. But I’m not. And that’s a fact.
At the weekends his Dad will take responsibility for him during the day, so I can sleep. The look of sheer disappointment on kiddo’s face as I drearily head up the stairs is heart breaking. I’m letting him down. But I just can’t get enough sleep when he sleeps.
Ultimately, I came to this conclusion. This medication will not have adverse effects. It should help him enjoy his days and get so much more out of his incredible brain. It should, I hope to God, make him feel better. And as for me, my sleep will be a very much needed secondary effect of his sleep medication.
I will be monitoring the use of these tablets very closely and will be in regular contact with the consultants who have prescribed them. The next thing to be discussed is the use of ADHD medication, and for that the jury is still very much out…
I hope you were able to read this with an open mind and a non-judgemental heart. Because my boy is at the heart of every decision I make. And he always will be.
Thanks for reading,