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Wednesday, 16 September 2020

Getting others on board with diagnoses, medication or therapies

As a parent of kids with special educational needs the world can sometimes seem a lonely place.  We rely on those close to us.  The friends I often make are parents who also have additional needs kids.  This makes sense really as I have most things in common with them.  We have a little community.  

But sometimes the extended family, teachers or friends can have misconceptions about certain diagnoses, medications or therapies.   This can make decisions about how to help kids even harder. 

Attitudes

Like society often shapes our ideas without us noticing, the same thing can happen when is comes to diagnosis, medications or therapies.  It could be that a child doesn't fit with their 'idea' of a diagnosis.  Both my boys are autistic but they can appear poles apart and the challenges they face although often routed in the same issue are different.  Neither of them is anything like Rain Man.  These kind of misconceptions can make accepting some diagnoses hard for extended families, teachers and friends. 

Sometimes the extended family will also go through the some of the emotions that parents went through when they receive a child's diagnosis too.  They may be scared or worried about what it means. They mean even not understand it, feel overwhelmed and try and push it aside.  The National Autistic Society have a great guide to help parents and carers post diagnosis but there's not much for everyone else. 

When Anthony started on a controlled drug for his ADHD, the assistant who helped him at school was very skeptical.  It can seem extreme, and like us all, their main concern is what it would mean for him. 

The pandemic has brought it's own additional complications.  Often the extended family or teachers won't have seen the challenges that have been going on which can make explaining things harder. Diagnoses can have been delayed.  I know friends who have relatives or schools who simply don't believe their child's diagnoses and this puts such extra pressure on them at a time when they need most support.

How to help

Information and resources can help with confirming diagnoses.  With something like our kids autism diagnoses we focused a lot on how the kids behaviours were different from their peers. With ADHD we were able talk about test results.   In most cases there will eventually be a letter confirming a diagnosis but again this can be challenging when there is a wait for some assessments

For some diagnosis people will want to know how it happened or what caused it.  This isn't always known which is another hurdle for us, but many of the questions may have been ones you asked when the child was diagnosed so take notes when you get back from appointments. 

Sometimes though, teachers and relatives can just need time to adjust to the information too. They may never have come across a condition before and it can take while to digest what it is and what it means too.  In some cases there may be relatives support groups for certain conditions which can help things be accepted or find support. 

Information can also help when it comes to medication and therapies.  We do our research before using any medication or therapy and our main concern is what's best for our kids. 

Melatonin was a big part of our lives as our whole family struggled with sleep for several years.  Both boys had sleep issues which is very common in kids with both autism and ADHD.  We bought melatonin patches back from the USA when David was younger.  I did research my own research into this and spoke to people I knew as it was because so difficult to administer the one we could get via the NHS.  We use melatonin rarely now - it's actually Anthony who sometimes has it these days. 

We researched and visited the ABA style unit at school that David ended up attending.  It was easy to find  others that had misconceptions about this type of education.  But just like his speech and language and occupational therapy, it's what worked best for him in trying to help him learn, access school and develop the skills he needs for life. 

I knew that kids with ADHD could have medication before Anthony was diagnosed and thought it was only for 'extreme' cases.  By the time his condition was confirmed, several years after his original autism diagnoses, I was open to medication, as part of one of the possible ways to help him.  The clinical psychologist gave us lots of information and we started on a very low dose.  Eventually everyone including his teaching assistant was on board because it made a big difference to him. 

We knew their were side effects and so we have all monitored this carefully.  Anthony gets weigh-ins and blood pressure checks on a regular basis.   Now, we wouldn't be without his meds, because it's what he wants and as such it makes a huge difference to the entire family’s quality of life.   And we are fortunate that he hasn't suffered from side effects. 

It's often recommended that kids take a break from this kind of ADHD medication during school holidays, but that's not what's been best for Anthony so he continues to take them all the time at the moment. 

Although information from your GP, your own research and other parents can help, ultimately showing how the diagnosis, mediation or therapy is helping or supporting the child is key to supporting their acceptance. If a parent has done their research and believes bringing in cbd for anxiety is what they want to do or if equine therapy is supporting a child's communication development, then what they need is the support of those around them.

Which reminds me... I've got equine therapy on my list of things to try for David once lockdown is properly listed.  A few years ago this would have terrified me as I was worried David would be very rough and it wouldn't be safe. Now I'm hoping it will become available again as I've had lots of feedback that makes me think it could be a good fit for him.  

David's Grandma loves horses so one of our ideas is to talk to her about it.  Getting the family involved in therapies, appointments or meetings if it's something they know about can be really helpful in them understanding now they help a child. 

Parenting is never easy. There are a bunch of trials and tribulations that we all face based on our own circumstances and situation.  Having those close to us on board has been really important.  Look for support where you can and know that it's perfectly normal to be worried about everything, that some things will work and some won't.  We can all just try our best and focus on the results for our kids.  

If you have any suggestions, I'd love to hear them.

2 comments:

  1. The rain man comment really got to me! When I was diagnosed at 21 someone said to me 'oh that's why you're clever then' I was taken aback. I don't attribute my intellectual ability to having Aspergers. I worked hard to get the education I did. People can be so offensive without realising it, there's a lot of preconceptions still to eradicate.

    #KCACOLS

    ReplyDelete
  2. Great post, making important points. There are so many preconceptions and misconceptions indeed... Although so far, I've come across a better understanding generally here in the UK, than what we experienced when we lived in Sweden. It can also be tricky with older generations, who may still have a belief in institutions being the best places to care for disabled... Hopefully with time, things will get better and better. Fingers crossed! Thanks so much for linking up with #KCACOLS, hope you come back again next time x

    ReplyDelete

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