Fighting for your child’s rights

I want to start out by saying that i’m doing a whole lot of venting here so if I come off a bit abrasive, that’s why.

Today started off in a fairly typical manner. That was about to change. Gavin is struggling right now. While he is VERY capable of making good choices, he is simply making bad ones. I honestly don’t know what his motives are but something more is going on here. This morning, we had Emmett’s IEP meeting at Eastgate. The meeting was scheduled for 12:00pm and there was 8 or 9 people involved. Gavin was having a rough morning and his actions resulted in Elliott getting hurt, nothing serious but that isn’t the point. Around 11:00 am this morning, Lizze was napping with Emmett. Gavin came downstairs and told me something about his tooth being really loose. I told him to leave it alone and not mess with it. As it stands he may need to have spacers put in to keep his teeth from shifting around while we wait for the adult teeth to show up.

About 11:30am, Gavin comes down and tells me that his tooth “fell” out. That was the beginning of the end for me today. I had to go wake Lizze up because I wasn’t sure what to do, not that she did, but we could figure it out together. Actually, now that I think about it, we never did resolve that issue of the tooth. Anyway, I got so wrapped up in this thing that I lost track of time. When I realized what time it was I was already late for the meeting. I called to explain and tell them I was on my way. I had to go alone as there was NO way to to do it any other way at that point. Emmett wasn’t ready and so he missed his last day of school, which really sucks.

I have NO gas and I hadn’t had time to see if my direct deposit had shown up so I was running low enough that the light came on. Also the POS van is acting up and wasn’t cooperating on the way so it took longer to get there. I got to the meeting around 12:30pm and we got started. I have to say that everything was going smoothly until we came to the part about Emmett’s diagnosis. This is where I became frustrated with all the confusion surrounding Autism. The way the Developmental Neurologist worded her report was that Emmett was that basically, he has some words so he isn’t non-verbal and because he has no language he doesn’t have Aspergers. She labeled him PDD-NOS or Autism Spectrum Disorder. She explained to us that the two are used interchangeably and any respectable doctor or medical professional will know that. So according to what she told us, Emmett is on the Autism spectrum, so he is Autistic. He falls somewhere between really low functioning and Aspergers. Well the school psychologist, who I will add is VERY nice, doesn’t see it that way. It felt like we were splitting hairs over the wording of this report.

Anyway, they said he doesn’t qualify for services under the Autism diagnosis but qualifies for speech and language. They will NOT qualify him for OT and PT as they say he doesn’t need it for academic reasons. They actually were going to put him in a typical classroom in August. Emmett’s speech and language score was a 67 out of 115. That falls into the severe delayed category on the chart but they list him as moderate. How in the world would Emmett survive in a typical classroom with such significantly delayed language skills? I was honestly feeling very overwhelmed. They also don’t see ANY social or sensory problems with him. Are you kidding me? Emmett has more sensory then we know what to do with. How can they not see this as a problem?

At this point I objected and said that while I believe in my son (because they asked me to give Emmett the benefit of the doubt) I also know him MUCH better then they do. I want him challenged but I also want the a level playing field. Emmett has MANY sensory issues, he won’t wear clothes 90% of the time. His socks hurt him, his shoes hurt him and we have to cut the tags out of everyone’s clothes. Not only does he freak out over tags in his clothes but he doesn’t tolerate tags in someone else’s clothes either. His food can’t touch other food and he freaks out over colors and placement as well. How are these things not going to effect his education?

I got them to more him to an integrated classroom of 6 IEP kids to 8 typical kids for a total of 14 kids in the classroom. I have to write a letter about my concerns and request an independent educational evaluation, which may or may not be granted. Lucky for us the IEE person they use is our very own Dr. Patti. So we lucked out there. I approved the speech and language parts of the IEP and will address the other concerns about social and behavioral issues in that letter.

Everyone was really nice and very helpful. I just don’t agree with everything and want to address my concerns, which they supported. The other BIG issue is that the school he will be attending is on Academic watch. My understanding is that the school is failing. Now on one volunteered that information at the meeting or I would have had issues with that as well. My ever resourceful wife looked that up when I got home. So I’m not sure how this is going to work. Emmett needs more help then a failing school can give him. I’m on overload right now so this is a bastardized version of the events that took place this afternoon.

I’m gonna cut this off here because it’s already long enough and the rest of the day revolves around Gavin and is a post in and of itself.

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diane

they tried to get me on "leasts restrictive environment" deal because I was giving up mainstreaming totally and asking for a program with only their most sever autistic people (nonverbal)…the private program gets all their kids/youngs adults via referrals from the school system and the entire school is just for them. The bike area was totally cool, each class has a different set up~one had lots of soft areas, one no computers as those kids would stim' on them (each class really used ipads and communication devices), one class was for kids with eating issues and they made their own lunches to get them to try something other than chicken nuggets.

but all the classes used the rotating aide and activity chart….all the aides knew all the kids to keep the kids fresh and the aides fresh with each new activity. the school site it self was old…1950 set up with the large windows (I'm so used to seeing portables with funky air and low lighting).

What I liked most (and why the program was full) is kids can go their for years moving up the grades and classes…it is all just for the most autistic…and my autistic child is drawn to people most like him and this was a world of people just like him.

The school district had their classes mixed with down's syndrome, high functioning autism, chair bound nonverbal kids and the most autistic kids and their needs are all very different and of course my kid seemed the most checked out with all his stim'ing. I did the school's way for years thinking mainstreaming was good for him….the reality is only people paid are going to want to spend time with my kid and he knows when the normies are activity avoiding him…dang the teacher was activity avoiding him!

I loved the idea of a whole world of kids just like my son and how this school got the most stim'ing child to attend and learn and communicate………you might not want such a restrictive environment, but they do have programs just for the high functioning person with autism too…finding these special programs outside the school is the tricky part~

ps the school would not do rpm or ipm as they are not "researched methods" ~private schools can..dang it is ripping some paper and offering two choice options~

diane

I would posture like you are "getting a team" together to support your efforts to get as many services on board…I went to visit the private autism programs and saw the huge difference in their program and the county's autism program. I didn't have the 3,500 to get a real lawyer on board (that was just to review the IEPS) but I did make lots of calls out to the protection and advocacy people getting their list of lawyers and "postured" like I had a legal team and that I was ready to go to fair hearing.

the school put everything on board i was asking for in the follow up IEP…OT got put up from consult to once/week because hand strength and tolerating the pencil was really important for "rapid response method." I saw that all the kids in the private program had a one on one and that the aide and activities changed every 20 minutes to keep the novelty factor going and got that too.

I wanted a reading program, a math program and science and spelling program (wasn't in the IEP before and if it ain't in the IEP they didn't do it)…got that….basically I could say their program didn't offer these things and I wanted the school to pay for the private school (for 50k a year plus the school would have to pay legal fees if I won the battle asking for private).

I came with example after example on the difference between the school and the private….the school is going to match every aspect of the private and basically develop a new class for kids like my son using the private school as the model. Clearly their new program will not be the same as the private but they are consulting with the private school to copy and try to make a classroom that is not overstimulating, develops the whole child, uses respectful language at all times, redirects the child to make the most of teachable times and uses an eclectic approach of aba, rpm (rapid prompt) and IPM (informative pointing method) to teach the code of language.

It took a year and I had enough evidence to sue them for the private program, but really the private program was full until december so I took their offer to copy the private program to save me the time and resources it would have taken to force their hand…the school's new pilot program is due to start this fall….it might be total crap, but at least they are putting grand effort forward ~and I get a follow up IEP in oct and got them to agree if they can't make it happen they will place my son in the private program the next semester…or at least make the referral to the private program…I have it all on tape in case they go back on their word….might be a shitty deal but I took it!

Lost_and_Tired

wow. Very impressive. I was off my game today for sure and I feel like I let Emmett down.However, I lived to fight another day and I have a few months to address any concerns I have. My goal is to avoid this school system like the plague but have everything set up in case I can't figure something else out.

Thanks for sharing and you are a credit to all special needs parents.

Rob

Beth

Not all schools or teachers are like that. We take sensory issues very seriously and include sensory goals in IEPs. Believe me, my life as a teacher is much smoother if I acknowledge my students' sensory needs! My school system has two autism evaluation teams and do our own au evals. We will give an educational diagnosis of autism even if there is not a medical one. What we don't accept is a note scribbled on prescription pad "pt. has autism" with no supporting documentation..and we've actually had docs send those in !

Jen

They have to by law grant you an iee, unless they have someone qualified to do it, then they will make you wait for them to do it, reject the report, and force them into paying for one outside the school. We have been down this road. It is so different with schools and how they view Autism. Some will not accept Aspergers or pddnos as Autism, and others will. Katie started out pddnos, and the school thankfully labeled her IEP dx as Autism, although her dx just got changed to straight Autism, so they can't fight us on it now (although some schools will be idiots about it and not give an educational dx, even if you have a medical one). Schools also don't give a crap about sensory stuff. We are still trying to fight for OT for that in school, b/c sensory most def gets in the way, they just don't get it, especially since SPD isn't in the DSM. Is he not getting any behavioral therapy (aba), either? Hopefully it works out…ugh…know what it's like.
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Lost_and_Tired

Thanks Jen. It's frustrating when, as a parent, you have to explain the in's and out's of Autism to people who should better understand. I would guess that Emmett's dx will have the pdd-nos removed at some point as there are more and more things presenting as he gets older. Although he has made great progress with speech and language he is still VERY delayed.

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