Sunday, 13 June 2021

Stuck in quarantine....again

 So I finally have a minute to sit down and write a post, its been a while I just don't have much time to sit down and put pen to paper so to speak these days, I've wondered for some time now whether I should hang up the towel with regards to this space but this space has seen me through so many ups and downs and looking back on past posts reminds me of just how far we have come and how much things have changed.

I think I that aside from finding the time I have just struggled with  how to use this space effectively, with the boys getting older I no longer see myself as a mommy blogger but I still want to document and share our journey as a special needs family, if something I share helps even one mom or family out there then this space has served its purpose and so here we are.

A lot has happened as I sit here now I am once again confined to our home along with my hubby and two of our llama monkeys due to covid, thankfully we are all well and covid free but Gabriel attended a family event with his father and unfortunately as careful as the were and that respect I can guarantee my ex is quite hectic, someone who attended tested positive and thus we are locked down for 10 days at home, I have to say its actually been great in the respect of spending time with my the boys and my hubby, its been peaceful for the most part and I was starting to feel a bit overwhelmed with so much going on.

I've changed job positions at work which was a big deal after sitting on reception for 9 years, not that there is anything wrong with that at all I had just reached a point where I needed a change and was thankfully afforded the opportunity to incite that change. I am also in the process of studying- which as a whole as an adult I can say is a whole different ball game; finding the time to study when you are working full time and have 3 kids and a household to raise isn't easy and the direction I have gone in now with my studies is so incredibly different from the direction I ever thought I would go in- quite honestly at the time I saw it more as a necessity than a field I wanted to fall into but now I am really enjoying it, crossing fingers, toes and eyes for my exam at month end  =)

The boys are doing well therapies with both Gabriel and Loghan are going well and Gabriel's psychologist has confirmed that Gabriel does indeed have ASD behaviors and traits that if he were more extensively evaluated will more than likely lead to an ASD diagnosis, for now we are not pursuing a more extensive assessment but it is a big help as far as helping us to parent and guide Gabriel in a more effective and supportive manner, at the end of the day I feel that a 4 grand assessment for a label is not going to do anything more for us or Gabriel at this point, we knew that this was most likely going to be the outcome and it helps us and his teachers help him we don't need a paper confirmation for that, at least not at this stage.  

Loghan is making big strides and we rarely have an issue at home as far as extreme meltdowns and behaviors are concerned, he is doing well in (controlled/supervised) social settings and we have had success with the education department, its taken 3 years but I finally found someone at the department who has put in so much time and support to help us that we are in the process of enrolling Loghan in a school (online) with a facilitator and his overall therapy is doing really well.

So as a whole things are going well, it really is great to be at a point where our steps forward amount to more than our steps backward, that is not to say that there won't be anymore bumps in the road but I feel that we are at a better place than we have been in years and that we have finally reached a point where people are actually listening and helping instead of ignoring and waving us off like we don't know what we are doing or talking about, it makes a huge difference for all of us and our overall mental and emotional states and although trying to fit in up to 4 therapy sessions in a week has been exhausting I know it will be worth it in the long run.

I guess that is it for now but I will pop in and update when we have more news to share- good or bad.

Monday, 26 April 2021

Moving forward!!!!!

So it's been a while... a long while but I have delayed posting on here because quite frankly I just didn't want to jinx the direction of our journey at this point but also because I felt like and still feel like I am going to wake up tomorrow and everything is going to be some kind of dream, someones idea of a sick joke, but no matter how many times I pinch myself we are still here at this good  better place headed in the right direction so today I decided to lay words to paper and update everyone on what has been going on these past few months.

First off if anyone has read my blog and knows anything about our journey, you will know that it has been as long as it has been painful, filled with so much hurt, disappointment and trauma and yet through it all we hung on to hope, hope that one day we would find the answer and our missing piece, something that would make everything fall into place and just make sense.

You see Loghan has been diagnosed with many things over the years: ASD, ADHD, OCD, Anxiety and ODD which was the most recent, but through it all I have always felt that there was something not quite right and although psychology is filled with diagnostic testing and criteria that one must meet for a diagnosis mistakes can still be made and/or things can be missed even by even the most brilliant doctors.

Just to make things clear I am incredibly grateful for each and every professional; doctor, psychologist, psychiatrist, counselor etc that has helped us along our journey even if it was for but a brief period of time, each and every one has given us more insight, another piece of the missing part we have been searching for. We still attend sessions at Red Cross and we have the most amazing psychologist there, a gentleman who has listened and been willing to search and try everything he possibly can but as I said even the best professionals cannot always see the full picture especially when you have a child or person who chooses to be selective about what they share or are willing to speak about.

In our search for help we have gone done many roads and tried everything we possibly could no matter how new or unconventional, you name it and we have tried it or at the very least researched into it and looked at the option, now my ex and I are vastly different in so many ways but this year a suggestion was made by my ex to try to go in a different direction and approach to try once again to find that missing piece, and when I say that I could not be happier that we took the leap and did this it would be an understatement.

2 months back Loghan started attending appointments at another center, this help wasn't sought as a replacement for the care that we receive at Red Cross but rather to supplement support and to get a different point of view if there was any to be had and in case you haven't guessed it by now we did and we have and I just cannot believe that it took so long to get to this point.

So what does Loghan have or not have?

Well he is for sure an Aspie or on the Autism Spectrum but that was something I knew in my heart even before we received the original diagnosis from Red Cross but secondly he doesn't have ODD which is something I suspected to be true but we now know for sure, he didn't meet the full criteria even the doctors admitted as much and his reasoning behind his behaviors just didnt match up or makes sense with an ODD diagnosis.

Aside from what we suspected or already knew  we have a new diagnosis that brings in the OCD, ADHD and anxiety; what we have is a diagnosis of PDA and that my friends is something magical because once we read the information surrounding PDA we were floored to say the least! 

At last we found that missing piece or at least one of them, a diagnosis that fit our child and his symptoms or traits to the T, something that proved that he was not just a naughty brat who did not want to listen just because, a diagnosis that proved he has an anxiety driven need for control (commonly found in ASD children particularly those who have experienced trauma) that is both very real and cannot be helped or at least he cannot help it, all the trauma as well as how certain people have reacted to him and treated him over the years combined with the way that he has dealt with that trauma I promise you it is so incredibly easy to judge a child or persons behavior when you don't know the full story or don't bother to find out if I wrote book I am sure people would find it difficult to believe, when I say our life has been a literal shit show circus and that our entire family has been told we have PTSD from having to deal with it all I am not exaggerating! 

So for a tad bit of insight...

What is PDA?

It is not just demand avoidance!!  All human beings avoid some things and this is typical.  The demand avoidance is understood in the following ways:

  • Anxiety driven need to be in control and avoid demands and expectations; own and others
  • Avoidance of anxiety about conforming to social demands
  • Escalating amount of resistance
  • Different to typical ASD avoidance (which is asocial; walking away/withdrawing).  Socially manipulative strategies can be used
  • Explosive strategies have been likened to panic
  • Need to consider in terms of what is developmentally appropriate
  • Extreme outbursts in 60% of cases
  • Lose temper and recover quickly
  • Driven to follow an impulse, ambiguity and need to be in control

There are a number of additional defining clinical features:

Appearing sociable but with difficulties recognised by parents

  • Can appear to be people orientated – this is due to a vigilance rather than a social need
  • Can use social niceties
  • Good eye contact and use of gestures and body language
  • Charming
  • Know what strategies work with who
  • Social approaches lack depth; confusion about level of response required – over power, oversensitive, over reactive
  • Gravitate towards adults
  • Uses adult scripts with peers
  • Over-familiar with adults
  • Uninhibited; lack of pride and shame
  • Difficulties accepting obligation/responsibility
  • Shock and confuse their peers by their behaviours which are often not developmentally or socially appropriate behaviours

Excessive mood swings, often switching suddenly

  • Empathy on an intellectual level not a feeling level
  • Can recognise but not share emotion/modify behaviour
  • Ambiguity in mood – ‘Jekyll and Hyde’
  • Low self-esteem and perfectionism result in the mood swings, which becomes a vicious circle because of how they feel after engaging in some of the more extreme behaviours

Comfortable (sometimes to an extreme extent) in role playing and pretending

  • 1/3 confuse reality with pretence; not just mimicking
  • Try to direct other person in joint play activities
  • Benefit from use of puppets; an indirect approach to interacting and communicating with others and plays to the person’s strength in this area

Language delay, seemingly as a result of passivity

  • More fluent eye contact and conversational timing than typical ASD
  • Less difficulties with pragmatics (non-verbal aspects)
  • Still literal and unusual content due to mimicry
  • Difficulties with processing receptive language (what is said to them)
  • Fluency strengths masks the difficulties that the person may have in understanding what is said to them

Obsessive behaviour

  • Demand avoidance is obsessive
  • Can be related to people in a variety of ways:
    • Blame
    • Victimise
    • Harassment
The psychologist that he is seeing at the center has also made headway in getting Loghan to fully open up about his feelings and past trauma which has heavily impacted his anxiety and approach to people in general, she has also arranged for him to attend sessions that will help with his trauma and education thereof that will help him in social situations and finally they are helping us as parents approach him and his behavior in a completely different way which is allowing us to make much further progress than we ever have.

We have been incredibly blessed with the most amazing support system, friends who have opened their hearts and their doors who have encouraged and supported us every step of the way especially when we have had a number of people over the years (not many but enough to cause significant backtracking and trauma for our entire family) who have closed their doors and said that Loghan wasn't worth the effort or was just a bad child, a child with ODD and a future psychopath!!!!! To those people I say look at your own doorstep and your own issues because holy moly did it take me a long time to get to the point of understanding how people can project their own issues onto you because they are blind to their own faults, it took me a long time to actually not just hear but take in and understand what professionals were saying when they said that we have done everything we can, that we are actually not shit parents which is how I felt despite knowing on a logical level that were and have been doing everything that we can every step of the way I would still feel and question every choice and every step instead of saying you know what that person was wrong or I shouldn't have just stepped aside and accepted what another person said or just walked away instead of standing up for myself, my child and my family.

We are making headway with the education department as well but that is an update for another day, for now I am just happy to report that we are moving forward, my middle son will be starting therapy soon as well and I have been back in therapy myself for a little over a year now, small steps and major changes so far and ahead.