The Dream…

I sit here riddled in pain. Physically, mentally, emotionally, utterly exhausted and tired, daydreaming about winning the lottery, publishers clearing house, or the HGTV dream home.  No, money can’t buy happiness or relief from the disease I suffer, but it could certainly ease the burden.   It can make things more bearable.  It can take the pressure off the anxiety of how my kids will be taken care of when I am eventually gone.  It would allow me to afford help to come to my home and take care of the tasks I can barely manage.  It can pay for the contractor to finish my projects that sit there silently blaming me for not completing them.  It can pay for our vacation to a peaceful place where we can reconnect as a family and draw strength from each other once again.

Ahhh, to dream the dream.  I’m sure there are lots of hours wasted dreaming about the what if’s of winning when the reality is so much more sobering, when it’s very unlikely to happen.  So I will concentrate on the here and now, slowly check off the overwhelming pile of uncompleted projects and tasks that sit there mocking me.  I’m not lazy, far from it, but it’s difficult to not feel like I am when my body is not cooperating with me or my mind is mush from brain fog.  It’s easy to feel like the burden when not so long ago, I was the rock.  It’s very difficult to pass of my responsibilities to others when I was the micromanager of past times, jumping in head first and tackling all like a whirlwind with limitless energy and ideas.  It’s hard not to dwell on those days.  I feel more like the sinking rock that drags you down to the depths of the ocean below, drowning in the sorrows and gasping for that last breath of air that fills with water instead.

But I’m the glue.  The glue that holds us all together, though frayed and dried and no longer strong as I was before.  Push through it, keep at it, strive to complete the goal and hang on for dear life while crying inside for some peace and a pain free existence.  Pain ever the sorrow that reminds me daily of my short comings, my health, frailty, and inability to be who I once was until I lay back in exhaustion and dream once again of having the right numbers, or my name be drawn and my existence can finally be at peace knowing that all will be taken care of.  Oh to dream…


Juvenile Disturbing the Peace- kid with a disability

I sit here in shock about the way in which our state works when dealing with kids with disabilities.  There are many services available for our children when dealing with their disabilities but it’s a stacked system and not in our favor.  You must have Medicaid to get them the proper services.  So we applied. We got denied.  We make too much.  So we used their Katy Beckett program which is for those who make to much. We got denied as they only accept certain conditions limiting those who qualify for the program. Funny thing is, my son would qualify if we can get him the testing to prove he has this condition that has been lumped into the autism spectrum.  But the wait for this testing is 1 to 1 and 1/2 years out!!  We had a referral put in last year in Oct and another from his med management doctor in Nov or Dec and they somehow lost both!  There is no such referral in the system for him.  So he’s back on the bottom of the list and while waiting he goes without these services.  He’s 13!!  It’s much harder to reach a 13 year old than someone much younger so the clock is ticking and we’re at our wits end!  It get’s better…

My son has a lot of issues. He has an IEP and a behavioral plan plus a no contact agreement against a particular Aid that is a trigger for my son. This aid called him a name a year prior. I did not file a report, only complained about it but once my son was transferred to this school I requested the no contact be put in his IEP. They did not but they did agree to the no contact. This particular IEP meeting’s notes’ have conveniently disappeared. I’m curious to see if it was documented as required since it was a concern brought up during the meeting. In Sept, my son was acting out and was sent to the PBI classroom per his behavioral plan. This Aid in question showed up in the classroom, triggered my son, and my son called him Mr. Dickskull rather than his correct name. He then said, Wanna go outside. I was called to the school to pick him up and he was suspended for two days. At this point we decided to just keep him home as he was transitioning to new medication. Turns out he was in a manic episode triggered by the anti-depressants given for his major depression and anxiety. We’re looking at a potential bipolar diagnosis later while still working on an evaluation for pervasive developmental disorder which is on the autism spectrum. Remember that wait?!  Sigh….

A few days after the ‘event’ at school took place, said Aid filed a complaint and asked for charges to be brought against my son. This is a special needs Aid who works with special needs kids, such as my son. The prosecutor sent it to diversion which I declined both due to being disabled and out of principle. It went back to the prosecutor and they have formally charged my son with disturbing the peace. We have an initial court date this Monday at 10:30 am. I’m just in shock that it’s even allowed when there is a behavioral plan in place IN ADDITION to a no contact agreement that wasn’t followed.  I understand this aid works both at the school and this particular classroom.  I understand it’s not always possible to keep them completely separated.  It’s tough.  But they know he is a trigger as is documented, or should be.  Thank God for the emails that talk about it.  So how in the monkey hell can this Aid who should be used to dealing with problem kids file charges against a problem kid when this is his very job!!!

I will not elaborate on the thoughts in my head.  God forbid I get charged myself for thinking them.   What has our society come to?  Punishing my special needs kid 4 months AFTER the fact is no going to benefit him.  We already know he has no filter and very limited executive functioning so words fly when riled. This is all well documented.  We have a behavioral plan for this very issue.  Was it followed?  Did they try positive reinforcement?  Remove the Aid from his presence and then once calm talk about the hurtful nature of name calling?  Did anyone even warn him that this behavior could even lead to charges being filed?  How is he to think rationally in the heat of the moment?  It’s very typical of my son to react first and once calm to think rationally.

I absolutely believe with all my heart that this particular aid was looking at revenge and took it personal.  He called my son a name the prior year.  He wrote scathing letters to the principle of my son’s prior school saying this kid was a danger to himself and others and was disgusted by him and his behavior.  This showed me that he is frustrated and angry at my child.  I can only assume adding the no contact agreement insulted him further and my son has often complained about him glaring at my son in passing.  So YES, I think it’s personal.  But who pays for this?  I do.  I pay by having to stop my already piled list of catch up items due to my own disability so I can devote my time to sifting through paperwork, research, looking for my resources and finding how to advocate for my son.  It’s exhausting, and frustrating, and painful! Yes painful!  Stress adds both pain and fatigue to my already painful and fatiguing condition so yes, I’M SUFFERING, not my son.  My son was already punished when suspended.  He was already punished at home.  How much more can you punish him for words!??!!

I was advised to file an ethics complaint against the aid and an investigation into the school in regards to seeing if they followed both his IEP and behavioral plan.  I know they did moving forward as they agreed to place him on homebound and he’s been receiving his schooling at home ever since.  He’s done fabulously.  He thrives much better in his home environment.  So yes, in the end, we readjusted his plan and it’s working.  But did they utilize the existing plan during the event that took place when he was suspended and then charged?  Guess we’ll find out soon enough.

I need a vacation.  I need to reset.  I need help.