New to the group/ Frustrated and confused with IU

Faerietale

So first of all, hi! I heard about you from a wonderfully amazing mommy friend of mine and decided to give it a shot. To make a long story as short as I possibly can. I am 27 with two wonderful kiddos. An almost 2 year old neuro-typical little girl and an amazing special little boy. Let's see, I had Jayson evaluated by an EI team back when he was about 2 and a half years old. They said that they couldn't diagnose him, but that he seemed to have aspergers and sid. He was seeing an OT twice a week and a teacher once a week. Lots of stuff happened and it took months and months of CHOP never calling me back, that i finally got the kids and I (single mommy here) settled into our new place and I got back on track with his OT. 

I took him to be evaluated with IU and after sitting in a tiny space with 7 strangers (and my son loves adults) they made me cry by looking at me like I was making stuff up and telling me they had 90 days to decide if they were going to help him or not. (they even pushed him into a meltdown, which I was NOT HAPPY about) So I asked around and got him an appointment at the pediatric rehab facility (really great place) and they did a complete eval and decided that he totally had sensory and fine motor issues, as well as social issues and that he needed OT.

In the meantime, the school psych from IU decided (after 2 months) that he wanted to see jayson around other kids. This happened at the play place, at the mall by my house. So, That happened and he didn't get the results he wanted, which meant the next day subjecting Jayson top more tests. Which he did not take to kindly to, because he did not want to sit still. Regardless, he said that he felt Jayson maybe kinda needed social skills classes but nothing else. Both him and Schriebers recommended that I get him an appt at CADD to get Jayson diagnosed.

 The appt at CADD is this thursday(we only had to wait two weeks) and I have been looking forward to it. However, i got home from a weekend with my family and there was an envelope from IU. it was the eval's they had done. I have never been so angry in my life. they blatantly lied in it, put things that weren't true and left things out that actually happened. They basically called me crazy and said my son was fine. His scores are 1 point above where he can get help and I cried for hours. I don't even know what to do or how to fight back. I feel like these people are burned out and maybe people try to get stuff from the state for free so they make stuff up, but my son is the one that is getting hurt because of it. Someone said something about an educational advocate, or something. i don't know what to do *sighs*

if you stuck with me on that one thank you, if you have any advice it would be amazing =^D  

Faerietale

Auntie, I was told you may actually answer this, by my wonderful mommy friend that reffered me to here. She said you were the best. I was a little emotional last night when i was trying to put it all into words, so I will try and get a little more clear. (I was also trying to remember everything I had to say)Firstly, Jayson is 3 turning 4 tomorrow and we do live in Lancaster now. Back when he was in EI we lived in Bucks county. I went into this meeting with a really positive outlook. I had been told they would provide the best help for me. I had dealt with the EI team in Bucks county and they were totally lovely and accomadating. Jayson was having a really good day so I was feeling really positive. The crying happened at the end, when they told me that they didn't know if they could help me. And then proceeded to tell me it could take up to 3 months to get back to me even to just observe him around his peers. They then asked me if I had any questions. I wasn't expecting the repeated questions when I got there, nor was I expecting to be there for 3 hours. I felt like I was being reasked to see if i was telling the truth or not. In the end it was sheer frustration that broke me. As for getting a thicker skin, my skin is tough. The past year has been hellish for my family and I and we have made it with our heads up. Finally settling into a peaceful friendly happy enviroment where we can grow and prosper. i realize that the meltdown (because it usually is bigger than a regular tantrum and this one last over an hour) was done on purpose. But to just do it and walk out of the room to have me pick up the pieces I felt was very very unprofessional. They told me they were going to observe him in a school, maybe even letting him attend one of their classes so it was a semi controlled enviroment. It ended up being at a play place, on an off day of school for most kids, at lunch time. The psych said he couldn't get an accurate reading on Jayson there and I had to bring him back. I use the word subjecting because they were being repetative and Jayson was telling them as such. The kid has been through a lot and everytime he got up from his chair the psych seemed genuinely annoyed. Jayson seemed to pick up on the guys frustration which ended up making him frustrated. It was a vicious cycle really and hard to watch. We got through it alright in the end, but if he wanted to see jayson around his peers, one on one time really wasn't doing that. I never said the testing is inconvient at all actually.I have a list of the scales used, I can write them all out if you could tell me which ones are missing that would be great(I can PM them to you)CADD seems to be a really good place, I know from a few parents I talked to that they love it there. The staff seems great and I am really looking forward to going there tomorrow. So only time will tell on that =^DI am angry, I am angry more so because of the things left out of the report and the things that were written that were blatant non truths. EI was going wonderfully, we were then forced to move out of the area and I kept driving two hours back to PA just to keep the services going while I looked for a place for us to live. And then when we found was, we were flooded out. The team was great and helped as much as they could. So it wasn't like I took a backseat on the issue, life happened. Unfortunatly jayson's father is not in the picture, nor does he believe in any of this "mumbo jumbo you are trying to make my son a retard bs" (direct quote) So I am flying pretty much solo on this. I just moved here, I do not know a lot of people and I am doing the best I can. I just want them to correct the report because there are falsities on it. I also have no idea how to get an advocate or what they really do. I know Jayson is incredibly smart, and I know that all of his doctors thus far have told me to get him tested. It is finally happening tomorrow, and i can't be more pleased with the situation. I also haven't done the daycare route and let his teachers make the call for testing because of his antisocial sometimes violent tendencies/meltdowns.  I was also told by his ot that the squeaky wheel gets the grease when it comes to kids like him. And I have never been a squeaky wheel, a loud one maybe but I do not know what to do next. I planned on just seeing what tomorrow brings, and I am hopeful that he will get what he needs in the end. I think when it comes down to it, my lack of support system is just making even little errors seem that much larger in the long run, and I could really use someone to help me through it. Even via forums. So I thank you both for writing back, I am going to grab those books.  I will post the results/how he did at the eval tomorrow.

Faerietale

Just to answer some of the questions you asked. Jayson is aggressive when frustrated and upset. The had included things in the report that I "said" (but never actually said) and they put things in that never actually happened( when they did the play observation with Jayson). They also discluded things that had actually happened, and changed the outcome (he went on one of those car ride things, he freaked out when it started going side to side and made me take him out. Then put him back in, the whole time he was in hysterics. This kept happening until the ride was over. In the report it said, Jayson loved the car rides. which is not true)

 Regardless, I had the interview at CADD yesterday, and am feeling really positive. this is how it went. (Auntie, I will send you an email about the tests they ran already as soon as I get home from work) 

Jayson's Intake at CADD-

First of all, everyone was so very very wonderful there. Paul (the guy who saw us) asked a lot of questions, observed Jayson and gave me a lot of insight as to waht is going on. At one point, he handed me a box of tissues and said "I know you always need to be strong, it is ok if sometime's you can't be. You aren't the first mother who needed these in my office and you won't be the last". He said that mother's intuition when it comes to their kiddos is the best and foremost thing most people look at when it comes to spectrum. He said the outside world, sometimes doesn't understand it and thinks that maybe you are focusing/talking about it too much because of that. He told me I am not crazy. He also told me that they hear what i reported about IU13 a lot and it really stinks that kiddos fall through the cracks. So the plan is this. He will have the ADOS testing on April 4th and a psych eval (to go over things not on the spectrum) on March 31st. On April 25th I will get all the results and find out where we go from there. I appreciate all of your thoughts and insights and listening to what is going on. Sometime's it is a lot to just keep in my head.