Tuesday, 27 September 2016

Updates



Yesterday we had our appointment with Loghans doctors and a school representative to discuss his results/ diagnosis and the way forward, I won’t lie I left so incredibly confused and emotionally exhausted.

Basically Loghans EEG came back normal which is great, results wise he scored one point below what it would take to diagnosis him as on the autism spectrum, besides that we found out that Asperger’s is no longer a recognized diagnostic term as from 2013 it is no longer in the diagnostic manual for mental health, so basically we were told that although Asperger’s is what fits Loghan best due to him being one below the results and due to there no longer being that term they cannot officially diagnose him on the spectrum but we must go forward and treat him as such… HUH?????

He also has very bad anxiety as well as ocd tendencies although not fully ocd, he also has various TICS, ADHD as well which we already knew about….

In short we have been told what is best for Loghan is to move him to a more structured smaller school that will accommodate kids with his difficulties, they will put him on the list for a local special needs school but the waiting list is long so in the interim we have to try and find other options, I am currently in the process of setting up appointments and contacting schools but it is not easy, most of the schools are private and we just cannot afford them which is incredibly disheartening, it often feels as if these kids are being punished for their differences and that if you do not have the money your child must just suffer and get lost in the system.

In the interim of doing that, we as parents and the school have to make a few changes, we have to try and find a facilitator for Loghan to help during school hours at our own cost of course as you have to apply for a government issued one and get on a list for that as well, and just try to keep our calm and remove ourselves or Loghan in situations where meltdowns begin, I have found myself playing referee more and more at home and it is just taking a toll guys, I’m tired… no I am emotionally exhausted, if Loghan has another meltdown he will be suspended again and there will be a governing body hearing, we have been through this before, they place you in front of a bunch of parents and one or two teachers, the parents look at you like you are a crap parent it is intimidating, embarrassing and just incredibly wrong and unfair, you leave there after begging and pleading for them even though you know by law they cannot expel your child especially when you are doing everything you frikken can to get somewhere, they leer at you make you feel like scum seriously guys I don’t wish it upon anyone it really is a horrid experience and they do not understand and in my opinion should not have the right to make someone feel that way or even make those decisions.

All I want to do is scream and cry and tell them that they have no idea what hell your child’s journey has been how hard it has been for them how hard you have tried how you have gone into debt over and over again trying to find help or how you probably spend more time concerned over your child their behavior and trying everything and sundry that they probably ever will, how difficult it is when you have to separate your children in order to keep relative peace in your household.

It’s not fair, it sucks and it makes me so angry because I know I am not the only mother going through this or who has a child who is going through hell because they are different and probably do not even understand their own thoughts and choices sometimes.

I just wish I could pack up my family and go away for a while.

Thursday, 22 September 2016

Limbo and Change....

Have you ever been at a point/place or time in your life where you get this overwhelming feeling or sense that things are never going to be the same again, that is how I feel right now.

Loghan had a very bad.... VERY bad meltdown at school this week it turned violent and led to him being suspended from school...again, I sat in the principles office for the hundredth time in a sort of limbo, a mixture of horror, worry and mental exhaustion.

I sat down with Loghan that evening, in all the years that we have traveled this journey we have never said to Loghan you are different or this is what is up that sets you apart from all the others kids... and so I took a deep breathe sat down on the bed looked him in the eye and spoke, I told him that I know he feels different and is different but that there is nothing wrong with being different, I told him that everyone has something that sets them apart some are afraid of it others embrace it and use it to their advantage and that he needs to learn to embrace his differences and use them to his advantage.

I told him how incredibly special and loved he is and we went through a list together of what makes him so speacial, we went through family and friends and things that make them different like my husbands long hair or my middle sons thumb sucking, things that may not seem normal to other people but there is nothing wrong with.

I hugged him tightly and told him we were going to work through this as a family and everything would be ok... but in all honesty I felt like I was lying, how can I tell him it will be ok when I don't even know?

We have another meeting on Monday with his doctors and the school, we will egt his results and hopefully a diagnosis, but the school is also at a pivotal point and I cannot disagree with them when your child has a meltdown and becomes a danger to themselves as well as the children around them.

I am questioning everything we have ever done, every doctor, every choice and I just have this feeling that on Monday our lives are going to change drastically and things will never be the same... this of course could be and hopefully will be a good thing.

It is also Jesse's birthday on Monday and I am feeling incredibly guilty, like I just cannot give it my full attention right now and that is so unfair, its just a royal shit storm right now excuse my french and I have to put on a smile and move forward and act like everything is ok when it really isnt and I feel like I am suffocating like our family is breaking down.

We are all just hanging in the air like an unspoken elephant in the room and even when we speak of what is going on or happening it feels like we are all far away.

I just really hope that on Monday we can move one step forward in the right direction... just one.

Tuesday, 20 September 2016

Dating your partner is important

I'm not going to lie Hubby and I have not gone on a 'date' in around 2 years, we have either not had the money or we did not want to leave the kids and I think it definitely plays a part in your relationship, without some time apart and alone together you tend to lose each other and so we were lucky enough this weekend to get out for a few hours no kiddos just us two and although it was strange it was wonderful as well.

Jesse went to play with his brothers for a few hours, we have previously looked after their baby brother on one or two occasions so my ex offered to watch Jesse in return which was very much appreciated and they had a great time together.

I dressed up =)


After dropping him we hopped on the bike and I stupidly forgot a good jacket so I froze my behind off all the way there which was sad because I LOVE bike rides and it took away a bit of the enjoyment for me, we went through to the Labia Theater in town and watched Florence Foster Jenkins, I cried all the way through it was so sad and so funny and so beautiful we thoroughly enjoyed it, it was wonderful to hold hands and lay my head on my hubby's shoulder like we were teens in love and honestly that is how it should always be I think we become so absorbed with life that we forget the small things so it really meant a lot to have that time.

  


Afterwards I was all peopled out, the theater was by no means busy but town itself is just a sensory overload, noisy dirty and busy not my cup of tea so I was happy to get back home, after coffee at my exes we got home and Jesse passed out he had a great day, we spent what was left of the day watching old movies and ate sandwiches for dinner it was lovely.

Peopled Out for the day
  

Jesse done for the day




After this adventure I have realized that hubby and I really need to take a few hours every month for ourselves even if it is just a walk on the beach or an ice cream or something, it really did just make my weekend so wonderful and I was reminded again just how much of an amazing partner hubby and best friend I have.