Meltdowns!

Jimmy had been having meltdowns at school almost daily since the beginning of the year.  Though, since surgery, he has been so much better with loud noises!   What he is having problems with is remembering.  Since surgery his teachers have told me that he has regressed a lot.  He doesn't remember how to do the math that he knew before surgery, same with all his other subjects and that is when he has his meltdowns!  He gets so angry when he is given work that he doesn't know or remember how to do!  For a time I was having to pick him up from school 1-2 times a week! One time, after he got to school, I decided to color my hair.  No sooner did I get the color on my hair, I was called to pick him up from school!  I did start to realize that it was happening a lot in the mornings, so last week I started driving him to school, instead of him taking the bus.  During this time he has been much happier at school and does still grumble some doing school work, but now will ask for help.  For this part I give credit to his Therapist who has helped him with coping skills and his teachers who are more than happy to work with her on this.

His teachers are great with staying in touch with me throughout the day too.  By the time I pick him up from school, I already know what kind of day he has had!  As I told his teacher, the bus must be really rowdy, because at the beginning of the school year he WANTED to ride it!

We have a sedated MRI scheduled for next week and an appointment with his neurosurgeon during which I want to talk about his memory loss!

Life with Jimmy: It's Been A While!

Life with Jimmy: It's Been A While!: I'm bound and determined to start blogging regularly!  2016 was a crazy year for our family.  After Jimmy rode the rocking horse down th...

Brain Surgery

His surgery was 7 hours long!  We were given a private waiting room because they knew it would be long and they didn't want us seeing other families coming and going.  We were given hourly updates, which helped!  He ended up with 4 plates in his head, which we did not know until months later when I could feel tiny bumps in the front of his head and had xrays done (it was bone remodeling).

He slept a lot the first couple of days after surgery, and only complained about pain the first day.  We were in the hospital for a total of 5 days, it would have been four days, but he had to poop before they would release him!  After the first day after surgery all he wanted to do was go home!

 I felt that in order to help with his healing, he needed to eat and his ADHD medicine killed his appetite. At the time of his surgery he was almost 12 years old and only weighed 50 pounds, he was SO skinny! I asked the nurses not to start the medicine again and here we are over a year later and he's still not on any medicine.

So ready to leave to hospital!

His cat Juliette missed him a lot!

Hanging with his big sis Sydney!

He is currently having anger issues and meltdowns at school.  He's seeing a therapist for this, but we may have to find a medicine that will help with this.  I've had to go to school many times to pick him up because of his meltdowns.  His meltdowns are really starting to interfere with school.  Any recommendations on meds?  Ways to help with his meltdowns?  I would love to keep him off of meds, but it's starting to look like he needs it.  He's also having a lot of moments of confusion, such as getting on the wrong bus at school, instead of going to glass, wandering the halls at school, referring to men as women and women as men.  On the plus side, he now weighs 77 pounds!

It's Been A While!

I'm bound and determined to start blogging regularly!  2016 was a crazy year for our family.  After Jimmy rode the rocking horse down the stairs when he was 3 years old, they did an MRI at Children's Hospital Cincinnati.  They found a 3mm cyst/tumor on his brain. THEY NEVER TOLD US!  They did an MRI on him the next year after he nearly drowned and still did not mention it.  When Jimmy was 7 years old we were sent to Children's to have him tested for autism.  That is when the doctor told us about the cyst.  She wanted an MRI to see if it had grown.  At that time it had not grown and we were told they would just keep an eye on it.  This MRI shows when the cyst hit 10mm and they decided that it needed to be removed.  

Our original surgery date was February 3, 2016, a few weeks before they changed it to February 10th. Funny thing, at Children's Hospital, if it's not emergency surgery, they consider it elective surgery...you know, like a boob job!  That meant that we would not know the time of surgery until the morning of!  Thank goodness we had an early surgery, 7am.  It was a 7 hour surgery!  More about the surgery in my next post.

School, Unfortunately

I have loved Jimmy's school and his teachers, especially the one he has had for the past two years. He has an IEP which we meet yearly to update.  This year the week before the IEP meeting, his teacher wanted to meet to discuss his behavior. I was under the impression that this was an informal meeting. I get there and not only is his IEP teacher there, but his speech therapist, occupational therapist and his IEP teacher's boss. I'm not going to name names, but I am still furious with them and no longer trust them. At this meeting his teacher's boss brought up all these services that I should sign Jimmy up for. Medicaid....what, we have insurance. DDS (developmental disabilities services). I really felt blindsided by this meeting.

We had just received the autism diagnosis in December and to get in to Children's Hospital for autism services it's a 6-9 month wait for some doctors.  I had not had the chance before this meeting in March to talk with a doctor yet.  This meeting ended at around 2pm. I had told them I wasn't sure about these services, even though the IEP boss said I needed to look into it right away.

About 9am the next morning Children's Services called me and said that someone from the school, the investigator said she could tell it was someone from the school because of the way they described his disabilities, reported that I sent him to school in clothes covered in urine and feces and he was dirty and smelled (he is sent to school bathed and in clean clothing!). As she was talking to me, I suppose she could see all his medical appointments or records on her computer, she said, "I think someone at the school has it out for you, because if this were the case, it would have been reported by one of the many doctors you see at Children's."

I cried for 3 days. I could not believe that I was being investigated for neglect of a child that I have stayed up with for 48 hours during some periods when his meds were keeping him awake. Everything I do is for my kids!

My thinking is that when I downplayed the Medicaid and DDS, the IEP boss went back to his office, he called 241-Kids and reported me, anonymously to get an investigation going, perhaps as a scare tactic.  If I were to get on Medicaid, the school could bill Medicaid for his therapies at school. When the school was called the investigator said that they reported to her that I wasn't doing enough for his autism, which I now question whether or not he really has, but that will be my next blog.

Last week I finally received notice from Children's Services that the complaint was unfounded and the case was closed. They never saw my son, they could just see from all his medical records that I was doing everything I could.

No longer do I trust the school. I have revoked their permissions to talk to his doctors. I allowed them to talk to them while he was being tested for autism. The school had already labeled him as autistic, before the diagnosis. That got them $11,000 per year, for Jimmy. That get this every year for each autistic child. I'm so happy Jimmy is such a benefit to them. I wonder what they would get if I signed him up for DDS. He is so precious to me, it is appalling that the school would try to get to me by calling Children's Services on us! I am still so hurt by this. His IEP teacher I had nominated for teacher of the week, which she got. I don't think she called, I think her boss did, but I do think she knew he was going to do it!

Results!

In December 2014, a few weeks before Christmas, Dr. Holly Barnard gave me results from her tests with Jimmy and the results were that he is on the Autism Spectrum. Not too sure how I feel about that diagnosis and whether it is accurate. Jimmy's school was happy to hear it because to start with, before the doctor's diagnosis they had already gave him the ASD label. I have since found out that the school gets $11,000 per year per autistic child. Now I wonder if it was a mistake to let the Doctor and Teacher talk.

I have a therapist friend (she has worked with Jimmy) who has always said that she didn't think Jimmy was ASD, she thinks he has a Sensory Processing Disorder, which none of the doctors have ever considered. With that being said, I basically gave the school full disclosure with the doctors and the school could direct them in which ever way the wanted. I have since revoked permission for the school to talk to the doctors.

I can't believe my sweet boy turned 11 last week!!!! For his birthday we wanted a very hard to find Legos set Monster Fighters Train. I did find it for him and he was very happy!

He absolutely LOVES YouTube and I've had to ban him from it, because he repeats what he hears and sometimes it's not nice!

Many Doctors, Many Tests and No Answers

Well my sweet boy turned 10 in May! I can't believe we are in the double digits now! He is as sweet as ever too. He has become more outgoing which I think is due to his IEP teacher this year, she will be his teacher next year too, granted next year starts August 20th!

He visited many doctors and therapists last year and they couldn't agree what, if anything is wrong with him (I think he's perfect). They have it narrowed down to him being on the autism spectrum or a cognitive disorder due to a traumatic brain injury. I just googled cognitive disorder and I seriously don't think he has it. They want to start testing him all over again and I really don't know about that. We had many, many appointments last year and I think it's hard on him. Coming back from the last one last year I had a stroke in the car on the expressway with my baby in the car!!! All is well now, but he was so worried about me. I begged and they let me come home on Christmas Eve. I called him everyday and he always told me that he looked all over for me and was worried and wanted me to come home. I have to admit, it made me cry.

 

The first full week school is back he has two appointments, on for an MRI to keep tabs on the cyst on his brain and the second one is with the Psychologist that ordered all these tests last year. I think I will see what she has to say and then make my decision on further testing from there.