Through Her Eyes:
The School And Your Special Needs Child…
6 Things You Need To Know

Devin came into this world smarter than I ever was and I knew she was going to be a challenge. She began reading shortly after her third birthday, was learning French by before age four and started Kindergarten 6 months before her fifth birthday. And if that wasn’t enough, she’s also ambidextrous. When she was diagnosed with inter cranial hypertension in September of 2010 she began losing her vision and suddenly school wasn’t easy, fun or exciting. My girl, the voracious reader, the student who catches the teacher’s mistakes, the kid who loves to learn, began to hate school. It was heartbreaking for me and it was the beginning of a long road of working with the school to meet my child’s very specific needs.

School can be one of the most difficult pieces of the puzzle in the world of the chronically ill child and their parent(s). It’s been 3 ½ years since my daughter’s health issues began and never would I have thought we’d still be dealing with them. The good news is: we’ve learned to adapt and she’s surviving…even thriving! Here are 6 things we learned about juggling school and a chronic illness.


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This is one of the most important things you can do for you. Your child’s greatest advocate could be one of their favorite teachers, school counselor, coach, band director, theater arts director; anyone who cares about your child, understands their illness, sees their potential but doesn’t baby them. That is key; the last thing our kids need is sympathy or pity. I’m empathic and hope others will be as well, but I don’t want my child to rely on someone who feels sorry for them! This school advocate should be someone you can communicate with openly and who you can ask to reach out to your child during difficult times. You also want this person involved in EVERY school meeting even if it’s just for moral support for you and/or your child.

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We all know that the ‘compulsory attendance laws’ of each state dictate that students must attend a certain percentage of the school year in order to be accelerated to the next year (regardless of grades). This even applies to excused absences. These are not bad laws but the chronically ill child is often going to miss more school than the law allows and it is truly beyond their control. Call your school district’s administrative offices and speak to the department that handles truancy issues. In our district this is the ‘Student Services Department’. Ask them specifically if they have a form to be completed by a physician that protects your child from truancy due to chronic illness. Our form is called the ‘Doctor Verification of Need for Special Attendance Considerations’ and must be completed by the child’s physician and sent to the district attendance office by the physician’s office. I get a copy for my records and ensure that I give copies to my daughter’s school nurse, principal and guidance counselor. Now, once you have this handled you must continue to turn in notes for absences and ‘return to school’ notes for all doctor visits in a timely manner (in accordance with your district’s rules). I highly recommend that you keep a copy of EVERY personal and physician note for your child. My daughter turns in many notes, and things get lost or misplaced and human errors do occur in school record keeping so it’s best to have all of the notes saved in the event that there is an issue. Now that you can breathe a little easier knowing you won’t have to free the dreaded truancy notices, it’s imperative that you ensure that your child only misses school when it is absolutely necessary. The last thing we want is for them to lose the sense of importance in attending school.

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The one thing I’ve done that teachers, principals and counselors have expressed the most appreciation for is providing them with comprehension information about my daughter’s illnesses. At the beginning of each semester (my child is high school age and so teacher’s frequently change) I provide each teacher (and everyone else directly involved with my child at school) a list of each of her medical conditions (I also include internet links where they can read more about the illness if they wish) and how that diagnosis impacts her personally and educationally. Next, I list the medications that she is on, explaining why they are prescribed, what benefits they offer and what side effects the have specifically on my child. Now this is certainly a personal choice as you may only want the school nurse to have this information, but in our situation I felt it was in my daughter’s best interest to share more broadly. Finally, I list the types of specialist she sees and what their role is on her medical team (I don’t list their names, just their specialties). I have found this important because it helps others understand why she has so MANY doctor appointments. When your child’s educators know and understand more about their chronic illness(es) I hope that you will see and experience what we have: a group of people coming together to brainstorm and even ‘tag team’ when needed to help your child overcome the obstacles of missing so much class. I’ve seen some pretty frustrated (even kind of grumpy) teachers become incredibly creative with my daughter to help her meet her scholastic goals after they understood more about her world.

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If your child is not already involved in special services at their school get working on this NOW! I suggest first meeting with his or her school counselor to discuss what types of services best fit your child’s needs. You may need to request that your child be evaluated for services provided under the ‘504 Section’. I’m sure you won’t be, but if you are met with any resistance or told that your school district doesn’t participate in ‘504’ be persistent; ‘504 Section’ is a federal statute and compliance is not optional! Get online and type in ‘504 Section for [your state]’ and you will find lots of good information.

Next, discuss with the guidance counselor the difference in the services that can be provided by ‘504 Section’ and the district’s Special Education Program. All states have special education programs and these programs have a little category called ‘other medical issues’ or ‘other medical needs’. Your child may have zero learning disabilities but may be vision-impaired (like my girl), hearing-impaired or just have a chronic illness. This is where they would fit in under those programs. Don’t be afraid of this. It may not be what’s best for your child, but take the time to learn all that you can about what services could be provided for them before making a final decision.

Once your child falls under one of these service umbrellas, an IEP or Individualized Education Plan will be developed for them. This IEP can be incredibly detailed and really nail down everything your child needs to be their most successful. Each IEP is updated yearly, at a minimum, but can be updated or reviewed at any time when requested by the parent of the school and it’s very important to request a review if there are any changes in your child’s health.

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Fake Dictionary, Dictionary definition of the word communicate.

I stay in constant communication with one person or another at school. I email teachers when Devin is absent to inform them and ask if there’s anything we can work on at home. I email the counselor when I know she’s having a rough day so she can check in on her if she has time. I email my daughter’s favorite assistant principal when I feel like she’s slacking or getting a little horsey (my phrase for teen-aged surliness) so he can take a little walk with her and have a chat if he has time. Everyone knows how to reach me via cell and email and they know I will respond as quickly as I can. We want the school to be available for use so it’s important that we are also available for them.

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The teachers are not always wrong; to be fair, my daughter’s not always wrong either. But, she’s not always a sweet little angel. Don’t always assume someone is out to get your poor little baby and that everything they do wrong is because ‘bless his heart he just doesn’t feel good’. Our chronically ill children are just that, chronically ill. And this often includes means chronic pain. But, that’s never a license to slack off, to not do their work or to get others to do things for them. Our greatest challenge, at times, is to continue to daily keep our kids active and productive in spite of their medical conditions and to teach them that they may have hurdles and obstacles but they can manage them and work around them and even conquer some of them.

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Not everything that has worked for us will work for you. Get creative, learn your state laws and district rules and gather together the people in the school who can best assist your child in keeping their learning environment safe, productive and challenging.

So, what school services have been most helpful for your child? Who have you found to be your best school advocate?


Stacia Hood is a mental health/substance abuse therapist and writer living in the Dallas, Texas area. She has four children; two biological and two that were gifted to her through a former marriage. The ‘big kids’ are out and about in the world so it’s just Mom and ‘The Baby’ left at home together. Through Her Eyes is a peek into the life of Stacia and her daughter Devin who began losing her vision several years ago. Follow her on Twitter @Stacia411 and