Organized Special Needs Paperwork

Oct 9

 

While I generally don’t share personal family topics here on the blog, today I’m sharing something very personal. And I’m branching out this way in an effort to help parents that may be struggling with the same organizational issue. This is a very sensitive and raw topic for me, for obvious reasons – no one wants to see their child struggle through any kind of illness or issue. But if I’ve learned anything through this difficult process, it’s that sharing with other parents can be helpful, fulfilling and give you HOPE and STRENGTH. That is why I’m sharing.
2 years ago my 6 year old son was diagnosed on the Autism Spectrum. For families that may also be touched by Autism, his specific diagnosis is PDD-NOS. For those unfamiliar, those 6 letters mean he falls in the “non-specified” area of the spectrum.
At some point I may feel open to share more of our entire story about the signs I was seeing in my son (from a very early age – 2) and how we arrived at a diagnosis. But that would depend only on how helpful it would be to my readers. This is an organization blog…but if I can help ANY parent in ANY way with our story or the therapies our child was/is engaged in, I’d do it in a heartbeat. So please reach out if you have questions or want to hear his story.If anyone knows the struggle, frustrations and loneliness leading up to finally knowing what is going on inside your child – it’s me.

The reason I’m sharing this topic is because I was feeling overwhelmed with my son’s paperwork. I’ve kept all of the important documents from his first assessment at age 2 through the current therapies and benefits. His kindergarten teacher contacted me last week to ask for a copy of an IEP…and it took me 15 minutes to dig through my papers to find the latest version.
I’ve been working in the office anyway getting re-organized, so this was the right time to assemble a binder to hold all of his paperwork. After I went through the hanging files full of papers, this is where I was left…

Seeing the amount of paper, I figured a 1 1/2″ binder would do the job…

I love insertable plastic dividers because I don’t have to punch holes in important papers. Many of the papers contained in this binder need to be hole-free. I found dividers that are 2-sided, which means they hold more to get more bang for your buck…

After the dividers were in the binder, I organized the paperwork…

Love these happy colors…

The dividers come with label tabs that can be fed through your printer…

But I just used my label maker

So organized…makes my heart smile…

For future use, I tucked the remaining labels in the binder pocket…

The spine is labeled with my son’s name and is in the office closet with other important binders.

Moving forward, I should be able to find exactly what I need when I need it – without spending 15 minutes or more searching and digging. This will also allow me to stay organized moving forward. There are sure to be changes in therapy as we move on, so the binder will be my go-to spot for updates, changes, and record keeping.

 

For those interested in organizing a special needs binder, here are my labeled sections:
*contact info (for the various therapists we see – and potential therapists I may call in the future)
*current therapy schedule
*school district (this section includes our IEP and assessments/end of year reports)
*children’s hospital (his first assessment results)
*medicaid (my son qualifies for financial assistance with therapy payments)
*sample medicaid application (to help me when it’s time to re-apply)
*psychological evaluation (official eval paperwork)
*speech/language evaluation (official eval paperwork)
*OT evaluation (official eval paperwork)
*pragmatics
He is currently a full-time kindergarten student and attends a private school, but for the last 3-4 years he qualified for free speech therapy services through the school district. The therapist from the district comes to our school 2 times a week and folds speech into his day. Additionally, he attends an amazing therapy center 3 times a week for occupational therapy and a group setting pragmatics class. Please reach out to me if you have more questions or just want a shoulder!

comments +

  1. Samantha, thank you for sharing your journey and very useful tip on managing that journey. I respect and relate to your desire to maintain your family's privacy. I am the same on my little blog. My daughters are teens and would be miserable if I shared details about them. My son is 10 years old and has already asked me not to share details. I mention them (of course 🙂 but respect their wishes for privacy.

    • awe – thank you SOOO much! you have no idea how much your supportive words mean to me.

      thank YOU!!

      best,
      samantha 🙂

    • Gina says:

      Three weeks ago I cried thinking about going through my son’s paperwork so he would be ready for the school year. Its more related to sorting through the reminders of such a difficult year. Even having processwd that, I have still been sitting here for 30 minutes looking online for a way to organize my son’s things. Autism, or any special need for that matter, just seems to cause “paralysis of analysis.” I havent even read past the first paragraph of your blog yet, but I thank you SO MUCH for sharing. Now I think I can actually get up off the stairs with at least a plan.

  2. I used to share my family's pictures and names all the time, but after reading your blog for awhile I decided to cut way back on what I shared. I am glad I made that decision. Thanks for all the great organization tips you always have here.

  3. Julie says:

    Thanks for the reality check, that behind the steady smile and upbeat postings, there are unshared burdens we bare. I take care of a grandson who is type 1 diabetes. At age 2 he was diagnosed and received at least 4 shots and 12 sticks a day, for forever. Six years later, he wears a pump that gets changed every three days, so not quite as bad as the beginning. Thank you for sharing your burden with us. That's what we are here for.

    • julie – YES, so true!!!! you hit it on the head! my posts, and the posts of many other bloggers, may come across as though we live a perfectly stress-free life. SO NOT TRUE! everyone has burdens and issues at home. no matter what part of life those burdens come from, we all have them.

      i really wanted to share a little about our son's story because it is a story of sadness and despair followed by hope and optimism…and i know other families that may be struggling would like to read that there is someone else out there going through something similar and that we can all use the encouragement and hope of others to get through the sad days.

      thank you for sharing a little about your grandson. i so appreciate it! and i wish him all the best.

      best,
      samantha 🙂

  4. casadeberry says:

    Sam, having walked this same walk, I totally know how you feel, and it doesn't get any less messy, either 😀 Great post on a subject so close to my heart.

  5. tobiasstacey says:

    I'm also on this journey with you! We live in Michigan. Today my son with Aspbergers took the MEAP test.He was SO nervous about it. Wouldn't you know it- a few minutes before he was to take the test, he slammed his finger in the bathroom door! You know how easy it is (NOT) for these kiddos to be able to "move on" when something like that happens. So, today was a difficult day. I appreciate your willingness to share. I also would like to compliment your organization of all your son's paper work. As a public school teacher, I would love it if parents would have all their child's paper work this organized. Thanks again for sharing.-Stacey

    • awe, stacey – that breaks my heart! i hope his day did improve…but YES, i totally understand those small struggles. what is easy for some kids to brush off and move on from is NOT easy for our kiddos. i truly hope his day was better and the testing wasn't too negatively affected because of it.

      thank you for the compliment on the paperwork as well. it was more than time for me to get this done…it's been years of the papers piling up in the office desk. i feel so free now having them in a binder and easy to access. 🙂

      thank you again!!!

      best,
      samantha

  6. Nadia says:

    Sam, I loved that you shared this with us. We all have issues in our lives and it helps to hear how others deal with their issues. Thanks 🙂

  7. LoriU says:

    This is a great organizational tool! Thank you for sharing. Our son is also PDD-NOS. He will be turning 30 soon! I understand what you are going through.

    • WOW!!!! your son is turning 30….i would LOVE LOVE to know how he is managing. if you would like to send me a private e-mail, i would welcome a conversation with you on the topic. my number one fear is the future for our son. he is doing amazingly well in therapy and has made SOOOOO much progress just in the last year. but the worry in the back of my mind is his future and his ability to live a full, independent life. of course, only if you are comfortable sharing – i would love to talk.

      thank you for sharing in here!!!!

      all the best,
      samantha

  8. ganell says:

    I would just like to say thank you for sharing this. It's not easy at all to talk about or think about the struggles our kids have or may have. My son has a severe speech, social delay, and sensory disorder. He hasn't had an official diagnosis, yet. I have struggled with organizing his paperwork, as well. This post was very informative and helpful!

    Thanks again.

    • awe, thank you so much! i really hope this organization idea will help you as you move forward on your own journey with your son. there is certainly a lot of paperwork down the pipeline if you have yet to get your official diagnosis. there is always something to stay on top of around here – that's for sure! 🙂

      thank you for sharing with me too!

      best,
      samantha

  9. I've found *so* many people in the organizing corner of blog land who are also raising children with special needs! Either we have to be organized to handle the situation or it's genetic 🙂 My son, now aged 10, is somewhere just on or just off of the autism spectrum, and by the time he was 8, I had two binders full of autism-related paper. When I get overwhelmed by life, I organize (I'm sure many of you can relate). So when he had a difficult spring, I scanned every piece of paper in the house! It's made a huge difference to be able to email evaluations and test results to anyone who needs them–and if anyone still needs a paper copy, it's easy enough to print out. I have folders in my computer that correspond to the divider tabs I used to have, and I save everything with a title that says exactly what it is and the date, so there's no sifting through documents to find what I need. I've started scanning his schoolwork too, so I can track his progress without accumulating more paper.

    Thanks for sharing–I work with moms like us, and we all need to hear that we're not alone–and some good tips on how to handle the everyday stuff like paperwork.

    Take care,
    -A

    • hi alison!

      oh yes – you and i would be best buds if we lived close…when my life gets the best of me, i always turn to organization or some kind of cleaning/organizing project. haha!

      i love your idea of scanning the paperwork! great idea! thank you for sharing that tip!

      wow, your response really touched my heart. thank you for sharing your story!! and i hope you (and others that have replied to me here too) will feel comfortable to come back and update as i share more about our son's story.

      thank you again!!!

      xo,
      sam 🙂

    • Better late, than never, eh? I'm a transplant to the South, so who knows–we might not actually be that far apart geographically.

      Happy Holidays.

      -A

  10. Kallie says:

    Thank you for sharing Samantha! While I know this is an organizational blog, it is nice to connect on a more personal level. We too have a child affected by ASD. Our almost 8 year old was diagnosed at 3 and soon began developmental preschool through our school district. This means I have 5 years worth of IEP's, progress reports, evals & re-evals, and everything else under the sun. I have been struggling with how to corral and organize it all, so this post was perfect!! I love the binder idea for current documents and also love Alison's idea above regarding scanning documents and saving on the computer. I have scanned some of our more recent documents but will have to consider scanning more! My biggest struggle has to do with old documents – old IEP's, progress reports & other documents from the school district specifically. I have heard to keep it, which I have, but I swear I could almost fill a file cabinet with just that stuff! I guess this is motivation to tackle it! I would love to know what you and others have chosen to do with previous years school related documents, as well as your story. I have learned it is super cathartic to share your story and put yourself out there once in a while, even though it feels super vulnverable. Thanks for sharing – us Mommas have to stick together!

    • hi kallie!

      WOW, thank you SOOO much for your sweet reply. and thank you for sharing your son's story a bit in here too. thank YOU!!!

      i liked Alison's idea above too – about scanning the papers. i may have to consider that…and it would be best to do it now, while i have just 1 binder full of papers…not 2 or 3 binders. 🙂

      regarding the old documents, i have kept it all. however everything old that i have is also in that binder. we have evals going back to 2008 and they are in there. but maybe our early evals were just more succinct. we starting having him evaluated at age 2…and they couldn't really help us b/c much of his behavior was in line with how 2 year olds tend to behave. it wasn't until we did our major testing when he was 4 in the spring of 2010 that we received HUGE amounts of test result papers, our official diagnosis and other paperwork. i would definitely suggest keeping it all. but maybe scanning all of those old documents as alison did so you don't have them piled up in a filing cabinet. it would likely take you a lot of time, but would be so freeing and worth it in the end.

      i will definitely share our story soon. all of these replies have really touched me. and it's also so sad to know how many other parents are feeling the way i do. it's hard to stay positive, so i think it would be great to support one another! 🙂

      all the best to you!
      samantha 🙂

  11. Jenn Lifford says:

    Wonderful post! My son is also diagnosed with autism and we pretty much have the same binder as you! Working as a pediatric therapist myself, I love it when parents are as organized as you are and I find it especially helpful for the IEP planning. Thanks so much for sharing your wonderful ideas at Clean and Scentsible. I love having you!
    Jenn 🙂

    • wow, jen! thank you so much for sharing your story!!! thank you – really!

      as alison said above, so many of us in the org blogging corner have children with a special need. very interesting! and i think we really could all support one another. i would love to help anyone in anyway i can.

      and thank you for your sweet words about this little binder project. i was happy to share with your readers and i love your link party and your blog. thank you so much!!

      xo,
      sam 🙂

  12. Jenn Lifford says:

    P.S. I pinned this on my therapy board too!

  13. Lemons says:

    Thank you for sharing this, Samantha. I have a son, who is now 20 years old, who has special needs. I have collected a large amount of paperwork, even now, when he is out of the school system, and it does need organising.

    I am going to investigate whether those insertable plastic dividers are available here in the UK.

    Jo x

  14. I am so glad that I found this through A Bowl Full of Lemons! I too have a son that has Autism. I, too, don't want to share too much personal stuff with my readers, but I felt it was relevant when I did his room reveal since it is such an important space for him. Thanks for sharing this!

    • hi there!

      thank you so much for stopping by and sharing a bit of your story. i will def swing by your blog to read about your son's room reveal – so fun! YES, their room is such an important space for them. our son has very very very special things that no one is allowed to touch or move…so we are careful to keep them as he wants them. although i have to fight off my clutter issues when i see them piled high on his bed. 🙂

      thank you again for the sweet comment!

      xo,
      sam

  15. Kim S says:

    Thank you for sharing your story. I'm sure many people will be helped by your experience.

  16. Amy says:

    Thanks so much for sharing this. I have three special needs kids 14 (considered recovered from ASD), an adopted 8-year-old girl who we thought was healthy until the age of 6 when she was diagnosed with a very rare adrenal disease (congenital adrenal hyperplasia), dyslexia, dyspraxia, apraxia, and the list goes on and on, and an almost 3-year-old who we were told not to attach to because she would never walk, talk, or even look at us – she is missing half of her brain and also has Chiari-1/syringomyelia (and a different rare disorder) . . . but they forgot to tell her the grim news because she talked before my other two children and also taught herself to read 🙂 Anyway . . . it has really been in my mind for the past month that I need to get a complete current binder together for both my younger girls. I have been stuggling for the past weeks trying to find a system that I like that I can update with new consults etc., as well as provide a copy to their main pediatrician who we go through for referrals because our neurodevelopmental doctor is not covered by insurance so she does not have any of that info. I also homeschool my middle child because of immune issues so I need documentation all of the time and it is all over the house. I never thought of those pocket dividers. You must have been inspired to share because I finally know what I am going to do (basically your system combined with another – one of my girls has 13 doctors). Thanks, you will help a lot of people! This took one more worry out of my head. Now to find all the paperwork . . .

    • hi amy!

      wow – you are my hero…seriously! how do you do it all??? you're a saint! a genuine saint!

      i'm sure you know all too well the paperwork that comes along with therapy and evals and more…so reading my little post must have seemed small in comparison to the amount of papers you might have. but i truly hope my idea will help you out. as the blog is titled, i keep it simple around here. and the binder is definitely going to help me stay better organized with his paperwork. his teacher was able to photocopy the IEPs she needed and then i just popped them back into the binder dividers when she gave them back to me. easy! i also have extra copies of our official PDD-NOS eval paperwork b/c more often than not, someone needs a copy for something…and those are so thick. it's just easier to have extra copies on hand when the time arrises.

      i am so glad i was able to help you!

      all the best to you,
      sam 🙂

  17. maybutterfly says:

    Just discovered your blog, why did I not find it earlier???? Thank you for posting this, I have been umming and arring about starting a blog, but like you did not want to put a lot, if any information about my family for the very same reasons you listed, it would be for me to do and my choice, I ask anyone that we have contact with that is on facebook not to put pictures of my family on there (we don't have a facebook account ourselves) as I don't want them on there. So I am so glad to see this post as it makes my decision to start a blog much easier as I feel that I can do it without mentioning too much about my family.

    • awe, you're so sweet! so glad to have you here and so glad you found me too! 🙂

      yes, the whole should i / shouldn't i share photos of the kids, etc….that is a tough one. i still struggle with it. but i am here to say it is possible to have a blog, with great readers, when you don't share personal photos of your husband and children. so start that blog already!!! 🙂

      xo,
      sam

    • maybutterfly says:

      Oh and you have a lovely name, it is what we named our beautiful daughter!

    • thank you!!! i do love my name as an adult…it can be more formal (samantha) or casual (sam)…and i really prefer sam 🙂

  18. :) says:

    I use a binder too except now my kid is 14 so I have multiple binders. He is 14 and has Aspergers, ADHD, and anxiety. I find this is the best way to keep things wrangled too. I also heart the EBD teacher who copied IEP's on colored paper. It really helps so the originals and different year IEP's seperate.

  19. April MsALM says:

    Wow…I just had a similar situation come up with a Doctor and started working on organizing my daughter's medical papers just yesterday. She sees so many doctors in so many places and any time we go to a new place they want to know where she's been, who she's seen, when, what they did/said…all that jazz. And of course, I can't remember them all. So…I started organizing the paperwork by month/year, but as I go through it I am also creating a month/year at glance spreadsheet with all appts, places, people, medications, etc. listed out so I can take it with me to see at a glance. A already carry a detailed list of seizure activity so thought hey, why not make it a total binder. I'm lugging as it is…lol.

  20. Nichole says:

    Thank you for sharing. I can relate to all the paperwork. Our son was diagnosed at age 3. He will be 9 next week. I have kept ALL the paperwork for reference and similar to you, I decided when he was in Kindergarten I needed to do something because it was taking too long to find requested papers and info. I set up a system very similar to yours (now divided into a state binder and school binder) I LOVE this system and it still works for us today. Your son is truly blessed to have a wonderful parent who is getting him great therapy and who understands the need to keep the papers as reference. I love looking back and seeing just how far he has come and how much he has learned.

  21. TheFiveDays says:

    I love this post! I have two children on the spectrum and organizing all of their papers has just been beyond me…mostly because I'm so busy managing behaviors and recording data all the time! I have looked all over for more organizing and homemaking help from other special needs families because most of what I read online is nearly impossible to implement in my own home. I am struggling with how to keep the house clean and organized, take care of three small kids – 2 with special needs – and do all the other things I need to get done. So far it hasn't been possible but I keep looking for someone who has figured it out and can show me how. Thank you so much for this post….I will pass it along to many others!

  22. thank you for this. my 3 year old son was recently diagnosed with autism and the paperwork to keep track of is astounding! i'm just starting to organize my 2 sons' paperworks (3 year old has autism, 11 month old was premature by 2 months so he has his own sets of paperwork to keep organized lol) and i'm lost haha. but reading this helped me get on track! thank you so much!

  23. Simply LKJ says:

    I can totally relate. I share a bit more about our girls now that they are older (adults, 19 and 23), but there was a time I was really leary especially after one comment I received. I know those who are going through what you are with your son appreciate your willingness to share what you feel you can. While we do not have a child with learning differences, a disability or terrible chronic illness (all who could benefit from this type of organization as the paperwork mounts up in just a matter of minutes-I have a girlfriend who has binders FULL from the time her son was going through chemo for leukemia)…we do have a daughter who has a benign cyst in her brain and who suffers from migraines. I too needed a place to keep all of her important medical records, tests, films, dvds with scans and such. I too found the binder system worked best. I used top-load sheet protectors in mine. I have enjoyed reading your past posts. We have a lot in common on the organizational front.

  24. Dianne says:

    I spent last winter converting a lot of my paperwork to binders. I have them all lined up on shelves in my office. Examples are: Camping, Warranties, New House, (3) for Recipes, Rental, etc. This has completely changed my office from piles of papers that could not be located, to being able to go right to what I want (or send the husband). My next project is the file cabinet, like you did yours! A tip to readers, get the extra wide dividers so that they can be seen when you use the page protectors. Thank you for all of your tips.

  25. Sabrina Dean says:

    It's wonderful to see someone post organizing tips for special needs, Thank You! I have 2 sons that were diagnosed last year with ADHD / Aspergers and this past year I have been on a journey to get organized and it has been overwhelming for me. I have recently been diagnosed with ADD, so my whole life I have struggled with organizing. I started with my mess of paperwork and achieved organizing my filing cabinet and medical folders for everyone in my home. I think the binder idea will work great for simplifying the most important paper work we get ask for all the time. With 4 school aged children I really have to start simplifying paperwork and have the latest paper work handy in a binder. I don't know if this will be helpful for anyone else but I had a great idea while organizing my families medical folders. I have a hard time remembering names and spelling of medications for everyone when filing out paperwork especially when they change medications or dosage . So when I get prescriptions from the pharmacy I receive extra labels that are the same as on the bottles for each medication, so I place them all on cardstock in each folder, make a copy for my purse and update them when any information changes. I think the prescription pages would be great to add along in the binder. Thanks for inspiring me with the binder idea, it will be great to carry along for appointments and school meetings.

  26. Anne Marie says:

    I just found your blog post through a Google search on the topic. My 10 year old daughter has several learning disabilities and sensory processing disorder, and now seeking a re-evaluation because we think she teeters along the autism scale somewhere. Anyhow, I wanted to share a couple more resources I'm include in my files in anticipation of possibly filing for social security disability when she becomes an adult. We are going through the ssd process with my oldest (20) who's unable to work because of her mental health struggles, and I realize now that it would have been so much easier if I had kept better records when she was younger. So what I've added to my youngest's files is:

    * Timeline Summary — basic excel spreadsheet with 4 columns (Date – Practioner – Purpose – Notes) to briefly outline things like doctor visits, testing, medication changes, IEP changes, or significant behavioral changes. This will help jog my memory and paint a better overall picture as the years go on.

    * Expenses Log w/Receipts — excel spreadsheet to tally all expenses related to her medical & educational care and 2-prong files to hold receipts in chron. order

    Hope this helps!

  27. Monique says:

    I used to carry a zippered 2 inch binger with me to every appointment. I often included significant clinical summaries, so Dr.s knew what other specialist were saying and could tell at a glance what other tests in that speciality had been done. She was 2.5 years befroe dx'ed with Velocardiofacial syndrome, whose name and genetic base were the new kids on the block at the time.

    A friend with adopted special needs children had a seperate binder for each child with vital info handy for when ER trips were necessary

    . In the case of autism spectrum issues, you may want to include snesory ideas in your notebook…ideas that may help make the situation tolerable for different situations. There are times we aren't in the situation for awhile and may forget what worked. Or think they are beyond a stressor when it arrises again. Or have good info to pass onto other.
    hth

  28. […] For those blessed with a special needs child, you know very well how much paperwork comes in, how much there is to manage and how difficult it is to stay on top of….and keep organized! It’s overwhelming for me and I’m a pro here. As I said, I previously shared my organized special needs binder… […]

  29. Madilyn Davis says:

    I found your blog with the back to school hop and I wanted to read another post and then I read this one. I sat during IEP meeting 12 years ago that started this journey, My son received speech from age 3 and OT from Kindergarten through high school. He is now a Senior. He is in a special class for help and goes out into the general ed for most classes. He has the same diagnosis as your son. Seeing this made me smile so thanks for posting such a personal story. I don’t know if you’ve tried but with my son we have eliminated all dairy and it help his mood, gluten made him hyper but we didn’t mind that. You may if you haven’t already try it

    • Samantha says:

      Hi Madilyn!

      Thank you SO Much for stopping by through the hop and leaving such a sweet, supportive and helpful comment. Thank you!

      We are inching our way to removing dairy, going one step of elimination at a time. If I remove too much at once, he wouldn’t have a menu to choose from – that is how picky he is. But dairy is next on my list! He doesn’t eat much of it, he’s way more into bread and carbs.

      My son also moved this year to a special day class … I have a post drafted about my feelings around it but haven’t felt brave enough to press the publish button. Maybe soon. It’s so hard…but I love this little boy even more. Thank you for sharing with me!

      xx,
      Sam

  30. Jamie Sarubbi says:

    Wow, you wrote this so long ago and I just did a google search and here you were!
    My son is on the spectrum and he is 16 and we are just beginning to go through the transition from
    high school and forward and the paperwork is overwhelming me.

    I have so much to organize and your blog has give me some great ideas.
    Thanks so much and I hope all is going well with your son.

    • Samantha says:

      Hello!

      I did write this some time ago and now my son on the spectrum is in 4th grade! Where did the time go, right? I have plans to update this system and it includes digital organization – woot woot! Be on the look out for that post soon!

      xx,
      Sam

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