Wednesday, June 5, 2019

Hopefully tomorrow is the start to get the answers for JJ.

      One of the reason I started a blog way back when was because I needed an outlet for just stress and the normal BS other people get to "talk " about. When I had my son that was the case more then ever. I had wanted him for so many years, I had 2 miscarriages before him & almost lost him twice during my pregnancy,he is my miracle baby. Unfortunately I had a horrible experience at the hospital which I will get into one day but, for now I will just say they didn't listen to anything I said, I was induced early due to lack of water but still forced to wait three days,(without proper pain relief)in active labor before they decided to do a c-section. 
  That leads me to where we are now ( & most likely the why). For the past 8 years he has been diagnosed with everything from Developmental disabilities ,A.S.D,to ADHD & severe Insomnia. He is a very sweet little boy but, he needs so much which of course I have & will always give him. Most moms have a hard time with children with just one of JJ's "conditions" I have R.A. & Crohns disease myself which makes me exhausted all the time. I need about 3 surgeries just right now but like most moms it doesn't matter to me, my son comes first. 
JJ has had a very rough school year & is actually going downhill developmentally so I finally have an appointment tomorrow at Mount Washington's Pediatric Hospital, Its an evaluation that takes hours. His regular Psychiatrist referred us there to start the process of finally getting some answers. JJ is not really verbal ,you can not get him to do things he doesn't want to. He cannot really sit still for any amount of time,wont go into certain places like doctors rooms,offices, etc. We cannot get blood, do x-rays etc.. so its been a nightmare trying to do anything. His Doctor is pretty sure that is there is some type of neurological issues. He has such severe ADHD, Insomnia, speech delays & so on, he will stay up for 2 days without even getting tired if I dont give him his medications which we keep having to increase.  Same thing with his ADHD medications ,they only work for a few weeks then need to be increased, its horrible. He is now starting to be angry & aggressive. Its more when we try to force him to do things & its the way he communicates- he will say "hands Off" but sometimes we have to force him. The school learned this as well. 
  School is a whole other issues- he does have  good team but its taken 2 years for them to start listening to what i have told them. I have been almost locked up for his attendance even know his doctor even wrote them a note telling them ,there are days I have he is just too over stimulated to go . I have not slept in the same bed as my husband in 8 years, We don't get to spend time together at night like other couples, we don't go out, cant do family things although we do still try sometimes but it always ends up the same, JJ having a huge meltdown cause of a noise or a fly or god knows what.  All that said His father & I love him so much & he is a sweet boy,very smart with phones,computers,etc.. at home when he is calm he is great. 
  We actually moved where we live now to give him the best chance at success. We use to live write on the Baltimore city line. JJ was in Pre K well ECI ( Early childhood Intervention)but I had to take him out of that school because he kept having issues. He would have started kindergarten up there but, I knew he needed more. I have an autistic cousin I use to tutor as a teenager, He is my age & went to school with me, I knew I had to get JJ down here where I grew up. The only downfall its about 3 times as expensive. We did it 3 years ago though. The area we moved from has turned to crap, not that it was that good to start but before you would get beat up now they just shot you. Our old house has been in the background on 3 different news stories. We got out just in time.Down here JJ has a full time aide, plenty of other resources he needs. He is in a "mainstream" classroom ( although that he now refusing to go in & does most of his work in the hall with his aides & special ed. teachers. he is talking & has a ipad that helps him communicate. He can write & was doing really well till the middle of this year. Now its just like at home- each day is a guessing game. They now also suspect a neurological issues. Tomorrow we have the interview to see what they think- I'm worried a few hours wont be a good amount of time to get answers but, we will see, they see a lot of kids. I'm also nervous about driving there, JJ grand mom was suppose to drive us but decided to wrk instead. That's another long story, If it were not for her I could drive in the 1st place, in fact if it were not for her, I would not be as sick as I am either. Most of my issues , I was born ( use your imagination why) but, they can be treated, so many kids have them and live normal lives because they get the proper treatments in time, it takes along time to get to the point where you need your hips & lower back rebuilt, your uterus removed ,etc..   .Bitter me - not at all.  lol. I actually let that stuff go a long time ago, its only when she still screws me I get upset. I hopefully only have another year till I can drive again then I don't have to ask for (& be disappointed) for help. You cant change the past , I have my own family & I will always put my son first, not a man,not a buzz ( being nice) not anything. Period!!
Tomorrow is the first step in getting some answer hopefully so I know the best way to help him. What are his limits, he is very smart & some days will do 1st grade level work but, other days I spend just keeping him from flipping out all day, there is no pattern. One day he will eat lunch in the lunch room. at school ,the next he is terrified of it. we don't know how to help him if we don't know why.. I personally think something happen when he was being born, its looking more & more that way but to me that is still so hard to grasp- maybe because if it is true- it would be life changing for JJ & I ,as horrible as that is, I would make sure they answer for it & my son gets everything he would ever need!! more then one of JJs doctors have brought that to my attention without me saying anything bout his birth. He stopped breathing a few minutes after he was born. He didn't cry but i was so sedated I just remember him not crying that's it. he was in ICU for 3 weeks for infection i never knew why he got. There are just a lot of unanswered questions. I hate to cross that bridge if its not true but, we keep coming back to that. Regardless of the "why". My Main concern is how do I help him, how do I reach him. Tomorrow is the start of this journey. I'm so nervous, I have been wanting this for so long.. I will write more about JJs story & his journey over the years but for now, I really wanted to get this out.