Could things be looking up?

Friday my son had a mini win!!
I had to go to his school to do intake for what is called the H3 Academy, which is run by a counselor from where I’d love to get my son into school. It’s a small group thing that counts as a credit for my son. Anyways, he sat in the room while we did the intake, talked, answered questions, and everything for TWO HOURS!!! He even had permission to go sit on the car whenever it got to be too much for him.
I was so proud of him!
I could tell he was anxious and wanted to leave when we got there, but the longer we spoke to the lady that runs the group there more I saw him ease up. He never fully relaxed, but he was no longer on the verge of a panic attack. Sadly we found out he also more than likely has PTSD do to all the shit he had been through in his short 15 years of life.
After how well he did on Friday the goal was to have him at least attend that class on Monday, but the poor kid get sick Sunday night and never made it. Now we try again next Monday since there is no school the rest of the week.

Today I got a phone call from two woman from the local Children’s Hospital who work as liaisons, they got word of how much school my son has missed, not sure how, and wanted to call to see what they could do the help out. After speaking to me they are going to call my sons school and speak with them to come up with a plan, based off my sons medical history, to come up with the best course of action to make school as successful for him as possible.

We might finally be moving in the right direction!!!

The system sucks

Just under about a month ago I applied for help from the Department of Development Services to help me pay for my sons aquatic wellness class, which is for kids with sensory issues to help get them moving and active while in water, works in social skills, and teaches them how their bodies move and the difference between sore and pain, when it comes to being physically active. My son has been in this class since January, I talked about it in my last blog, and each session is two months long.

Until the current session (which he hasn’t attended) I have been able to pay for the sessions all on my own, with sometimes some help from my dad. Technically my sons dad is supposed to be paying for half the cost. He is not. Even though it’s court ordered, per our visitation agreement. It gives ally got to a point where I couldn’t afford it on my own anymore, which is why I applied for the help, which would have just helped me pay for his classes.

The fact that my son has ADHD was enough to get a case started for him, which meant the next step was having someone come to the house and evaluate him to see if he qualified. About two weeks after I applied the woman doing the assessment came to the house and spent an hour talking with my son and assessing him.

I had high hopes that he was going to qualify for the help and waited anxiously for the letter in the mail with the results of the assessment. Well, it finally showed up yesterday. He does not get benefits. He needed to meet a minimum of three areas that he still needed help in. He only met two, self care and self direction. Those are pretty big areas, but I don’t understand how those are the only two areas he needs help in.

I wanted to scream and cry when I read that. I wanted to punch his dad in the face for not helping out. Every time I ask for his half he has some half baked excuse for why he doesn’t have his portion.

I don’t know what to do now.

This class has helped my son more than anything else he’s tried in the past and I don’t want him to stop going, but I just can’t figure out how to keep him in it. I can’t afford it on my own.

Is it really supposed to be this big of a pain in the ass to make sure my son succeeds? That he gets the help he needs and deserves? Why is it so hard for his dad to give a damn about helping him?

Just Mimicking Over Herr

For a while now I’ve been trying to get answers for my son, to get him the PROPER help, just to feel like I keep running headfirst into a brick wall.

When he was seven I had him tested for autism at the local Children’s Hospital and they told me “he isn’t autistic, but all of his other diagnosis can mimic that of an autistic child. If he was truly autistic us would be 24/7 and he seems to be able to ‘turn it on and off’, think like if his brain had a switch.”
The diagnosis he was given around that time were as follows: ADHD, Separation Anxiety, Oppositional Defiance Disorder, Generalized Anxiety Disorder, Depression, Sensory Processing Difficulties, and Parent/Child Conflict. He has issues with noises, lights, textures, his handwriting has always been horrible (I seem to be the only one that can read it), very routine oriented, does not handle change well at all, very easily anxious and stressed out, extremely smart but had a hard time getting what is in his head out, rule oriented, doesn’t know many of his emotions or how to deal with them, change freaks him out, I could go on.
I never understood how something could be so close to being something (mimicking autism) without actually being that thing.
I was also told I shouldn’t want the diagnosis or “label” put on my son because of the stigma that comes with having an autistic child. Did they really think I gave a shit about that?! I just wanted to make sure my child was getting the absolute best help he could be getting!

I did what they told me to do and had him evaluated by a speech therapist because he would stutter and struggle to get words out when he was stressed out or really excited about telling someone something. But, exactly what I expected to happen did happen. “He doesn’t need so each therapy because he can talk just fine, he can read just fine, I fact he can read and carry on a conversation better than most seven year olds that come in here. He just needs to work on slowing down to get the words out.” Um..... isn’t that something your supposed to help with in speech therapy?!?!
I had him evaluated for occupational therapy and they determined he needed it, but only for balance and working on dealing with different textures. Yeah, that didn’t last long. What the fuck ever. I’m just the mom. I don’t know what my child really needs.
Then that was the last bit of help I got from Childrens in that regards. He continued to be treated and medicated for ADHD, with me just learning THIS YEAR about the SPD I mentioned earlier. Therapy wasn’t any help because the therapist, after 5 years was never able to actually get him to open him up and we saw zero improvements on my son being able to handle his emotions, stress, anxiety, etc.

Late last year I got him into an aquatic physical therapy session to help him with loosening up his muscles from his hips down. They are extremely tight and he still walks/stands high on his tip toes at 14 years old. While in the PT classes they told me about an aquatic wellness group for kids with sensory issues, which he started in January. That class ALONE has done more for him with his confidence and strength than anything else he has done in the past eight years. While at one of these classes I was talking to one of the moms about how I’ve been struggling to get a diagnosis for my son, how ill the diagnosis from Childrens has sat with me for years, and how I just want to make sure my son is succeeding the great he can the mom told me I can take my son anywhere I want to get tested, I don’t have to have him tested through the hospital. I never knew that!! So I did some research that night and got an appointment scheduled the next week.

February of this year I got my son tested for the second time, fingers crossed until I had white knuckles that we would finally get answers to get the correct help. I couldn’t have been more wrong. My son gets really tongue tied when he has to read out loud and it stresses him out really bad, even more so when he isn’t expecting to have to read anything. It cake time for him to have to read a simple story along with the doctor and he froze. I could see it in his face that he wanted to say the words but he couldn’t get them to come out. This “professional” accused my son of faking it, threatened to end the test, said she had never seen any child have this issue during testing before, and said he was trying to manipulate his way out of doing the test. That OBVIOUSLY because he had ODD and was being made to do something he didn’t want to do he was trying to get out of it. I was shocked and had no idea how to react to this doctor saying this about my child while I was looking at the pained and tortured look on his face. After twenty minutes he is able to take and the test gets completed. Before we leave she tallied  up his “score” in front of us and told me she can’t give him the diagnosis and she was being “generous” by giving him a 9 out of 10 and that she “strongly recommends” I get him into psycho therapy before he ruins my life or his.
What. The. Actual. Fuck.

I heard about a study for teenagers on the spectrum and emailed the lady running it to see if my son would be eligible because what they were going to be focusing on would really help my son. He made it through the assessment, which meant he made it into the study. About a month into the study the handed us parents the breakdown of how each of our individual assessments went. Again, “not autistic” according to the same damn test the other two places used, but “does have tendencies that fit in with those on the spectrum and a different determining test may be used elsewhere .”
All the clinicians believe my son to be autistic even though he doesn’t meet the test requirements, the parents of the other kids in the study do as well.

I emailed his school asking for them to look into giving him an educational diagnosis to maybe revamp his IEP to help him the way he really needs. They looked at the results from the place in February, the paper from the current study, and his ETR, and told me “we don’t feel he is autistic, but respect that fact that you and he feel and believe he is. His high anxiety can mimic that of autism.  At this time we are not going to go down the road to do the educational diagnosis.” To the credit they have amended what they are doing to help him and work with him, but only time will tell if it actually helps. But it really hurt my son and pissed him off to hear his school say that about him.

What the hell am I supposed to do with all this shit though? Obviously I don’t give a damn what that bitch off a doctor says child. But how am I going to make sure he gets the help he deserves now when I have two places telling me I’m seeing something no professional is seeing? Even though I have people asking me weekly if my son is autistic. Even though the current plan of action at school for his ADHD isn’t doing shit to really help him? Do I keep fighting and start looking like I’m just going to keep going until someone finally goes “ok, to get you to shut up..... he’s autistic”?
No. I keep fighting because my son KNOWS he is autistic. Because my son knows he’s not getting the right help. Because my son knows DESERVES the right help. Because I don’t give a rat’s ass how it makes ME look, I’m doing this for MY  SON!

I have an appointment scheduled for a month and a half from now to try again to get him the diagnosis with a place that actually knows how teenagers present. Especially teenagers trust spent most of their lives making to try and foot in with the world around them. Maybe we won’t hear that my son is mimicking and actually is. Maybe he will finally feel like people are listening to him. Maybe he will finally get the proper help.

Maybe.