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.

Are We Heading Down the Autism Road?

Back in July I wrote how I took BabyGirl into our favorite Autism medical center for her sibling study evaluation.  She excels at gross motor skills (we knew she did), but she is a bit more behind in expressive speech.  It's been over a month, and I've yet to see any real progress with her expressive speech.  (She demonstrates understanding or receptive language much more than she communicates).

We've decided that rather than wait until the 18 month evaluation, we're going to contact the Early Education program in our area and have her evaluated.  I know from our previous experience with Acroboy it can take a while to get the evaluations set up.  By the time I had Acroboy evaluated, he started talking A LOT.  He still had a verbal delay, but it wasn't significant enough to warrant him receiving services.

Baby Girl is non-verbal (Mama, Dada, baba, and uh-oh make up the sum of her vocabulary).  She is also showing more and more pickiness with foods and textures.  I've noticed her getting picky about the temperature of the water when we wash her hands too.  There is a limited range at which we wash, or she starts crying.

She is retreating more and more into herself when she gets overwhelmed.  It reminds me very much of how her oldest brother was.  Back then I thought it was just "cute".

We have the first of the evaluations set up in a couple of weeks.  I am not sure if I am jumping the gun.  Am I worrying unnecessarily?  Friends have regaled me with stories of family members who didn't talk much until they were 3 and then went on the lead "normal" lives.  What if I wait like I did with her brother, will she become verbal and then not qualify because she's not "enough" behind?  It's a tough conundrum for us.  In the end we decided we would start the process and see where it leads.  She may or may not qualify for services.  Either way I'll continue to work with her the best way I know how, and I'll know I've been doing all I can to give my baby the best start possible.

Acroboy Has Graduated from Speech Therapy

Right as school is ending I received a letter from the speech therapist at the elementary school.  It stated that Acroboy has met all of his speech goals and services would be ending. 

I'm not sure how to feel about this. 

I'm pleased that he seems to have met all of his goals, but will he remember everything he needs once school starts again in the fall?  Will we have other issues that will become more prevalent? 

I think his teacher is nervous too. 

I did receive one piece of good news for us though.  The incoming kindergarten class is not large enough to warrant three teachers, so his teacher will be advancing to first grade with her students.  I think most of the kids in the class are excited (all of them opted to stay with her), but I am especially looking forward to this move since she knows Acroboy so well and we already have good communication and reinforcement between the two of us. 

We'll see what the summer and fall bring. 

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. 

Sprinting vs. Marathons: Living in a World of Quick Fixes with Long-term Challenges

It seems to me we are a society of quick fixes.  Everywhere you turn in media there are ads for countless medical pills.  There are pills and drugs and creams, for dry mouth, dry eyes, insomnia, depression, acne, irritable bowel syndrome, restless leg syndrome, ed, yeast infections, weight loss, etc.  You can make your eyelashes appear longer and fuller with hundreds of mascaras, or you can products that will permanently affect them. (And oh, by the way, it may actually change your eye color.  You have to read the fine print).  

We buy magazines with covers that scream, "Ten steps to a better you!",  "50 ways to declutter your home", "101 organizing ideas", "30 things you should do with your kids", "Seven great weight-loss recipes".  We devour lists and tips and quick fixes.  I'm pretty sure I'm not the only that wishes I could snap my fingers and my house would magically clean itself up--much like the nursery in Mary Poppins.  

I admit I am guilty of buying into some of these things.  I can't tell you how many organization books I've read.  I think subconsciously I keep hoping reading one more article will make me a more organized person.  I have spent more hours than I'd like to admit trolling Pinterest for recipes, meal planning, Autism ideas, and the like.  I've even written my own post on this blog about tips and ideas for navigating amusement parks with more than one ASD child, or how to capture the magic of a surprise Disney vacation when your kids don't exactly like surprises. 

Now don't get me wrong. I am grateful for the information and products out there that are truly helpful.  Three of my children have ADHD, and two of them are on medications that help them focus.  Before we tried the medicines, we went a more holistic approach cutting out sugars, gluten and casein.  We also cut out artificial dyes.  It worked when I could monitor my children's diet, but one little slip-up meant I had to deal with 45 minute long screaming tantrums.  I was exhausted and Whilrlwind would actively seek the things I was trying to keep out of his diet.  He would trade food at school, friends houses, etc.  It was a losing battle.  When we had his medication correct he was sweet loving, and easy to get along with because he could control his impulses and anger.

I've also found many useful tips and ideas that have made my life a bit easier in various ways.  Ideas for transitioning my kids to activities, freezer meals to try that included a pre-made grocery list, organizing and scheduling ideas that have made life run a little smoother and the like.

As good as all these things can be though, I have to remind myself that for better or worse, I am running a marathon here--not a 50 meter dash.

There are no ten easy steps to helping my children master motor skills like buttons or legible handwriting.  There isn't a sure-fire way to get my kids to respect personal space for others.  We have to practice reciprocal conversation skills, picking up body language and other things I had always taken for granted.  And, as much as I want to lose thirty pounds, it is not going to happen if I don't pay attention to what I eat and get exercise.  The quick fixes I've seen for weight loss have had their ramifications.  A former co-worker was very excited about Phenphen when it came out.  He would later discover he had damaged his heart with its use.

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A couple of years ago I ran a 5k.  It was a goal I had, and I was so excited to keep going with my running.  However, that winter I sprained both my knee and my ankle when I was rushing across my kitchen floor and slipped on a mat.  My knee and ankle hurt for a long time, and I did not get back into running.  This year I have a goal to run another 5k in the fall.  As I train with the walk/run method, I find I "hit the wall".  I get to the point when I don't feel like I can physically run one more step before I have to walk.  I remember from before when I hit that wall and push through it--even one or two steps more, the wall would get pushed further and further back.  I also remember there even comes a point in running when you get a second wind and you are able to go further than you did before. 

I'm not there yet, but I'm working on it.

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I would say I'm running a marathon in my life right now with my family, except it feels more like being in training. There are times we are running, but we hit our wall and don't think we can go one more step.  Sometimes we are metaphorically walking.  Moving forward at a snail's pace, but we are still moving forward.  It's the only thing I can do.  To not move forward would be to give up, and I just can't do that.

When I hit my wall or need to remember that this really is a long-distance run, there are a few things that really help me.  One is looking back and seeing/remembering just how far we have come.  Firstborn doesn't freak out at "crisis" situations anymore like he used to.  The kids have come from reading below grade level to reading above grade level.  Conversation skills are improving, Acroboy doesn't break down and cry anymore when a new food is presented to him, he is actually more willing to try new foods thanks to the food occupational therapy.  We've made huge strides, and in my moments of frustration I have to remember just how far we've come.

I also have to remember I am not running this race alone.  I have a running buddies/cheerleaders in my friends and family who support me.  My biggest supporters are my Heavenly Father and Savior.  Whenever I feel tired or discouraged I can turn to them through prayer, scripture study, service, contemplation, etc, and feel uplifted.  There have been many times in my life where I feel like they've carried me. 

This above all helps me move forward.  When I reach the end of this life and have to meet my Father in Heaven and Savior I want more than anything to be able to truthfully say:

I have fought a good ^afight, I have ^bfinished my course, I have kept the faith 2 Timothy 4:7

Remember when you are running today, it's not a sprint--it's a marathon and we're in it for the long haul.  If you need a little more inspiration, check out the video above or in this link.  We're all a little bit like Dayton and the Savior is our legs.  

Food therapy

We've started "food therapy" for Acroboy. Basically I make the nearly two hour drive every week to meet with the ocupational therapist who works with food. We do a food practice to help Acroboy get over his food aversions.

What aversions you might say? Gagging on foods he doesn't want to swallow, crying and melting down just even seeing certain foods. Limited diet that consists of pizza, pot stickers, Cinnamon Toast Crunch, pb&J sandwiches on bread (it has to be the Goober stuff grape flavor), only certain kinds of chicken nuggets,etc. Having issues with textures of foods or the way they are presented. He'll eat scrambled eggs, and but not the yolk in a sunny side or hard boiled egg. He'd eat french fries, but not potato wedges.

His therapist was great. She gave me so many things to work on with him. It's my responsibility to work with him at home to try new foods. We also don't refer to thefoods by name, but by attribute. So we try the yellow lines (Pirate Booty), then yellow circles (bananas), then blue circles (blueberries). Initially we link foods by at least one common attribute.

Acroboy won't touch a lot of the foods right now, but he thought today was fun enough he didn't cry so much when we had green circles (Cucumber slices). He wanted them as far away as possible, and he whined a little, but he didn't cry.

The therapist says it takes at least ten exposures of trying a food before you can really know if you like it or not. The goal for us and Acroboy is to keep exposing him to foods over and over and to slowly increase contact with those foods.

Let's hope this works!