Tracking Paperwork for Special Needs Kids--My Autism Binder

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• Hello!
• With six children, four of whom are on the autism spectrum and my toddler receiving services for speech and sensory issues, I need to be an organized mom.  Admittedly, some areas of my life are better organized than others.  Today I want to address something I've never really seen talked about--the sheer amounts of paperwork that comes with a special needs child and how to organize it.
• Whether you are like me with one or more kids with special needs and you've been doing this for a while, or a mother with a newly diagnosed child, you need a way to keep track of the appointments, progress reports, evaluations and 504, IEP and IFSP paperwork.  If you have a newly diagnosed child, I want to especially welcome you.  Take a deep breath and know that it will be okay because YOU ARE NOT ALONE.  You need to know this because I made so many missteps when we were first dealing with a new diagnosis.  The biggest one was not reaching out and sharing with others.

Frustrations and Gratitude

We had a 504 meeting for Acroboy.  Well, I thought it was going to be a 504 meeting for Acroboy.

Acroboy's teacher has been giving him some accommodations to help him in class.  He gets extra reminders, visual cues, he sits close to her on the rug and so forth.  His reading skills have blossomed under her care and we have seen him make some progress socially.

He has a dual diagnosis of Autism Spectrum and ADHD, which should qualify him for an IEP.  I've met with the district twice about an IEP for him.  Both times I was told he wasn't behind enough for a perceived academic impact on him.  I also had him evaluated for speech at an early age since he didn't really talk until about his second birthday.  By the time we got the evaluation done he was speaking enough that he didn't qualify for services.  I had worked with him on colors, numbers, shapes, etc. and so there was little for outside resources to do.  He just wasn't far enough behind to warrant services. 

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This time I wrote a letter stating that though he has dual diagnoses that both qualify him for an IEP, I would settle for a 504 to get the accommodations he is currently receiving written down on paper.  --Firstborn had "unofficial accommodations" and when we met up with a teacher who was less than understanding and willing to work with us, his grades took a nosedive.  I didn't want the same thing to happen to Acroboy. 

The school principal, school counselor, speech therapist, and teacher were all there.  The occupational therapist who examined Acroboy's handwriting was not.  The developmental pediatrician we saw at our favorite Autism medical center also diagnosed Acroboy with Hypotonia (or low muscle tone) in his hands.  Acroboy has terrible handwriting, though the occupational therapist said (via phone call to me at a different time) the handwriting is not out of line with what you would expect in a kindergartner.  

We went over Acroboy's strengths and weaknesses.  His teacher discussed how she had been working with Acroboy on a number of behaviors, social skills and things.  The school speech therapist talked about some of his struggles with social skills as well.  We all know he has had a hard time adjusting to kindergarten.  However, because he has learned to read above grade level and he can figure out times tables now that I have explained the concept to him (4x2 means four groups of two--and he figures out the answer eight), he does not meet their criteria for an educational impact.

They were quick to tell me that he still qualifies for and will receive speech help, but he does not get a 504.

I'm incredibly grateful that Acroboy (and really all of my boys) are doing so well academically.  I have high hopes that they will be able to be fully independent and contributing members of society.  I know many other families who are not so lucky.  Words can't really express how lucky I feel. 

I am frustrated and more than a little concerned that by not writing these accommodations down on paper I will encounter the same problems we did with Firstborn. 

The school officials also told me if we see Acroboy's grades and academic performance go down we can revisit the idea of a 504.  I asked that if I can't get a 504 for Acroboy, when they are placing him in a class next year, could they please place him in a class with a patient and understanding teacher who will work with him--even without the 504.  They assured me they will. 

Meanwhile the occupational therapist sent home a pencil grip and some exercises we can do at home to strengthen Acroboy's hands and improve his handwriting.  

I'm hoping and praying for the best. 

I Feel Guilty

I feel guilty. I really do. And yet i feel justified. I took Acroboy to music time and sat back and watched him act at his worst. I watched him be hyperactive, get in other people's spaces, and not pay attention, and I did nothing. Not a thing, nada, zip, diddly squat.

I did this because I wanted the school employees to see just how much help Acroboy needs. I just want to get him into a preschool setting where he can start working more on some social skills.

One of the other moms commented to me as we were leaving, "Boy, he sure has a lot of energy, doesn't he?"

Yep, I feel guilty.

I explained to her that I had purposely sat back because I wanted them to see how much help he'll need adjusting to kindergarten.

I think I was a little ticked off too, because I got a note in the mail saying there was no record of us ever applying for Acroboy to be in preschool. Umm, right. That would be why we got the letter saying Acroboy was on the wait list. Okay.

Now I have to straighten out this mess.

In addition, Firstborn's grades have been slipping lower and lower in math and science. He gets the concepts, but his anxieties are popping up again. He stresses out over quizzes and test and his mind goes blank for a few minutes. He then realizes how much time has passed and freaks out more. In his mind the missing time means he'll fail the quiz/test. If he fails the quiz/test, he will fail the class. If he fails the class, there is no way he can get into a good school. If he can't get into a good school, there is no way he can provide for his family. It goes on and on.

When I first started talking to the counselor, her first reaction was, "If his grades are slipping, maybe he shouldn't be in honors classes." Hold it right there sister. He gets the information, it's the tests, quizzes and organization problems that are the problem. All you have to do is talk with him and know he gets it. So do that--talk with my kid.

He had a decent handle on his anxieties thanks to the work with the school counselor and school psychologist and amazing teachers we had up to fourth grade before we moved here. Firstborn used to cry every time things did not go as he expected or when he would get himself working into an anxiety spiral. We had a number of student support meetings regarding how to help him. It was because of my friend's comment about Firstborn's behavior we talked to the school and started his diagnosis process. However it was not on an official 504. I've written a separate post on Firstborn's journey to diagnosis.

If I am really honest with myself, i think part of the reason the anxieties weren't as pronounced the last couple of years is I don't think Firstborn has felt quite as challenged at the schools here. Now that he is finally starting to get more challenged by new material and he is getting closer to high school, his anxieties have been creeping back in.

I had asked for copies of the school records before we moved, but I was told they would just forward everything to the new school. I took them at their word--everything would be forwarded. I should have been more adamant.

I went to the junior high to get copies of their current records and while I was looking at them with the counselor, we saw that there are absolutely no notes about any student support meetings, teacher's notes on behavior, counselor notes, or anything other than standardized test scores and grades. Either the notes never made it into the file, or somewhere between the move they got lost.

So there is no record of any supports or diagnosis for Firstborn. I think I have to take responsibility. I did not understand what would be at stake if I didn't put a "label" on my son. I thought I was helping him.

I was wrong and I feel guilty about it.

Now I've got to call our favorite Autism medical center and get Firstborn in the wait list to be reevaluated. I'm going to go about this the correct way so we can get him just a few accommodations so he can deal with his anxiety. He'll be starting high school next year, and the pressure will be on. I need to do everything I can to help him succeed.

I resolve to not let any guilt I feel hold me back. From now on I will be the warrior mom my kids need me to be.

Family Happenings

This pregnancy has been rough.  I've been so incredibly sick. But I at the same time I am so grateful to be in this position. I really had given up the idea that we would have any more kids. I didn't think it was in the Lord's plan for us. Because I thought we were done having kids and I gave away so much baby gear! My friend, Christy, who was the recipient of most of the baby gear gave or is going to give it back. When I am done with it, it will go right back to her. That part is a huge relief at least.

In regards to being sick, I've had to get acupuncture treatments for nausea and STILL wear my sea bands.  Were it not for the fact I've learned that a little bit of protein in my belly helps (I nibble on hard boiled eggs and turkey meat), and that carbohydrates tend to make me sicker, and blessings from the Lord, I probably would have ended up having another IV from getting dehydrated and not keeping things down like I did with Firstborn.  I tried the anti-nausea medication they said I could take, but I had a reaction to it.  

Based upon prior experience I am pretty sure I am having a boy.  I am just hoping that if it is a boy, and he too is on the autism spectrum, the Lord will grant me strength and wisdom to be the best parent I can be.  

Words really can't express how shocked I was at being pregnant.  I am so grateful though that we have made it further than we did with the last three pregnancies.  I've done a lot of soul searching about the answer I got, and I can see a purpose for it now.  The answer I got was that I had done all I needed to for my family and that I should focus on helping my kids right now.  I interpreted that as I had given birth to all the children I needed to. Perhaps I that is how I was supposed to interpret my answer.  Since then though, I have been focusing more on what my kids need.  

I have also gone through the difficult process of aligning my heart to the Lord's will for me.  I am sure this will not be the only time I ever have to align my will with what Heavenly Father and our Savior want for me, but I have grown so much closer to them.  Staying close to our Father in Heaven and Savior is a constant process I know. You really have to keep moving forward because doing nothing sends you backwards.  

Katie (who is now my first counselor), and Julie (my second counselor) have been a tremendous help. I was so sick we ended up telling them and the Bishop in addition to our parents because I needed the extra help. 

I was somewhat apprehensive at our 12 week visit. this was the visit where in the last two pregnancies things had gone wrong. First we had our 12 week ultrasound and we saw a strong heartbeat, and I could even tell the nuchial folds seemed thinner than the baby we lost. Then it was time for the doctor to see me after the ultrasound. When he came in a gave us a HUGE smile. Everything looked great at this point. I felt so relieved-- we made it to a crucial point.

We still didn't want to tell the world at large, but we felt lighter and a bit more optimistic. Thankfully as well, my morning sickness ebbed just in time for that family vacation I planned for in May.  

We had a good time--so much so that our most recent trip has earned A couple of separate posts.  I have had to put off things for my other children because I was so sick with the one I am carrying now.  One of those is pressing for C5-Trainboy--though I think Acroboy is more appropriate now--getting him into preschool.  We're almost to Christmas and he still isn't in a program yet. We were told we were on the wait list. There have been days when it was all I could do to make breakfast and lunch for the two of us, so I had no problem not having to run him to school each day.

Acroboy is smart, so it is not the academic portion I am worried about. It's getting him to adjust going to school each day. It is getting him used to a regular classroom setting and interacting with large groups of children. He goes to the children's class each Sunday, but that isn't a substitute for a weekday routine. His sister got a call just before Winter break and would she like to join the preschool. I had been hoping that would be the case again, but not so far.  I have another meeting with the district after the holidays to hopefully get him an IEP. I am hoping they'll put him in one of their preschool programs then.  Private preschool really isn't an option for us. 

We took him back to the medical institute's center for autism.  He had another ADOS and other evaluations.  This time he has a diagnosis of not only PDD-NOS, but ADHD. It's really not surprising given how hyper he is all of the time.  I've been seeing him act more and more like Whirlwind all of the time. He has food and texture issues though, so medication is not an option in my mind.  We will see what meeting with the district brings.

Trainboy is evaluated

We met with a neurologist and someone who works in speech who administered an ADOS evaluation for C5.  They determined that yes, C5 meets the criteria for being on the spectrum.  He is overly formal in his communications at times, blurts out random phrases like, "Thank you for shopping at Wal-mart" and had a hard time participating in the imaginary play they tried to engage him in.  The official diagnosis is PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified).  He would probably qualify as Aspergers, except that he had language development issues (would say a word and then lose it), and now he speaks well.  
 

It is my same sweet little boy, but I still cried when I got the diagnosis.   

Our little babies are such miracles.  The first thing you do is count those little toes and fingers and you know that your baby is perfect.  

As Trainboy has grown I've been paying more and more attention to things he has had a hard time with. When he was almost two I got him on the waiting list for a speech evaluation because he wouldn't talk.  Our friend and her daughter (who was his favorite babysitter ever) came to visit us in our new home almost two years ago and through their help, coaching and encouragement, Trainboy finally started talking.  At that point we really worked on colors, alphabet and more.  Every day we practiced what animals said, labeling trees, cars and any object we could see.  By the time we had C5's evaluation, he was no longer considered speech delayed enough to warrant any services.  He knew his colors and alphabet too well.  

Talk about a Catch-22.  I worked with my child because he needed help, and because I worked with him, he didn't qualify for help.  What am I supposed to do, let him fail just so I can get him the additional resources we need?

This time, in 2011 I took his diagnosis to the school district--I was hoping we could establish an IEP going into school and get him into a preschool setting so he could start having more than Sunday interactions with kids his own age.  I was hoping we could work on some of his issues, and I also was looking for something more structured than just a playgroup.

The school shut me down.  They basically wrote off the ADOS evaluation scores because of who administered it.  

They did offer some speech help based upon the other speech evaluation.  It's a small step, and not nearly as much as I wanted, but hopefully this will be the first step in getting him more services.  We'll see how the speech help goes.