Day 10. Autism awareness month continues …

April 10th.  The journey continues ….

Medication.  Medication is often like the search for the holy grail.  It’s hard to find a perfect fit and even when you do, often the medication ceases to be effective after a period of time.  It is something which needs to be constantly monitored and reviewed.  Medication also often causes a lot of controversy amongst parents.  There are those who are against the use of medication in children with Autism/ADHD/Anxiety and those who have had to resort to medication to help their child.  No-one wishes to medicate their child but sometimes you are left with little option.  When you have seen, felt and experienced that moment it is evident that you just simply have no choice.

James started medication when he was four.  He was self-harming.  He would bite right through his lip until it was hanging open.  He would chew inside his cheeks and lips until the whole inside of his mouth was covered in ulcerated sores.  He would hit himself and chew and bite his hands.  When you see your child in this state it is evident that you have to do whatever you can to help your child.

I remember one night when James was 2.  He was crying so I’d gone in to check on him.  In the darkness, I could feel wetness on his face and then on the bed.  I turned the light on and in horror saw there was blood everywhere.  He had bitten right through his lip.  I woke Chris and we took him out to the TV and nursed him in front of Thomas the Tank Engine.  We were trying to distract him from biting his lip.  Nothing would distract him.  It makes you feel so helpless and so desperate to see your child harming themselves in this way – and he was so little.  Chris and I were both in tears that night.  It was very distressing.  This behaviour continued until we put him on his first medication.  That’s what it feels like and looks like when you know you have no other options left except to medicate.

James started a new medication at the start of this year and is in the care of a new Psychiatrist.  By the end of last year, James was on four different medications – one for anxiety, one for ADHD, one for agitation and one for sleeping.  He was very sensitive in particular to the Ritalin going in and out of his system. The medication itself worked really well for him.  But when the Ritalin left his system (around 3-4pm) each day we would have the most hideous meltdowns.  So we changed over this year to one single medication that covers all his concerns.  It started out not too badly, but as time has worn on and the dosage has increased he has become quiet, less verbal, his eye contact has deteriorated, he seems ‘flat’ and he’s having muscular pain in his legs.  He has also gained weight.  All of these are side effects of the medication. 

The school holidays have been challenging.  James has been becoming increasingly hard to manage. He has become at times violent and has been having meltdowns 2-3 times a day. Tom is stressed out and Chris and I are exhausted.  So … drastic times call for drastic measures.  I visited the Psychiatrist yesterday and we are going to wean James off all medication.  Then we are going to observe what happens and then we will make the next decision from there.  He has been on medication for so long now that I feel we need to see what his baseline behaviour looks like again.  The Psychiatrist says he likes to admit children to hospital for this process but again, I’m fortunate to have Dad on hand and loads of support whilst we go through this process.  I also think that hospital would be extremely distressing for him. I’m very glad we can do this at home.

I have requested a month’s emergency leave from work so I can be home to look after James.  I am so fortunate to work with such compassionate people and work for a family that values family so highly.  They are always a wonderful support to our family.  I’ve contacted the school who (as always) have been wonderful.  They want him to come to school for as much time as he can manage comfortably.  They will communicate with me constantly about how he is travelling. I’m thinking 8:30-12pm will be enough whilst we go through this process.  It will take about 3 weeks to wean him off everything.  Then we observe for a week.  Then we decide the way forward.

Through all this I am so grateful for the Psychiatrist we have.  He is a wonderful and very generous man.  He is so passionate about walking this road with us and he listens to all our concerns with an open heart and mind.  When I relayed the plan that the Doctor and I had discussed for him, James’ response was, “Oh I love Doctor X! He’s just like Mentor from the Power Rangers!”  Interestingly, this is actually the case.  Mentor is wise and imparts words of wisdom to the Power Rangers.  He empowers them so that they can protect the world.  James’ doctor is a very endearing character.  When I relayed this story to him he said “Tell James I accept the title!”  Having great medical care makes such a difference on this road.  I am so grateful for it.

So … the journey hits a few bumps … but we’re still moving xxx

6 thoughts on “Day 10. Autism awareness month continues …

  1. Libby, I wish you well for the next few weeks. Thanks for sharing your stories. I’m going to put your blog ‘address’ in our school newsletter now that school is back, as I’m sure there are many mothers (and fathers) who will be able to gain insights and understanding from your journey.

    • Thanks for your kind thoughts Carmel. I’m kind of battening the hatches here … but I’m secretly hoping it will all be reasonably gentle. Fingers crossed. Happy to have more readers. Keen to spread awareness. Thanks for checking in. Love to the Treasures from me x

  2. Oh Libby I can’t imagine what you are all going through really. It’s one thing to read your story but an entirely different thing to live it day after day.
    I wish you and the family all the very best in the coming weeks and pray your journey is not too difficult and upsetting.
    Take care and love to all. xx

    • Hi Deb! Thanks for checking in. We will be OK. We’ll just take it one day at a time. I’m just so grateful to have the time to be at home just focusing on being a mum. Hope all is well with you and yours. x

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