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Navigating the School System as a Parent of a Disabled Child


 





Learning is the building blocks to life

Throughout our entire life we are learning, growing, and changing. From the time we start kindergarten all the way up to highschool our teachers build onto the information we learned in each subject the previous year. Then we get to the point were we get ready to graduate where we have spent many years learning how to read fluently, how to become a great writer, tons of math skills, and a bunch of other information that we may or may not even use depending on career choice. It doesn't stop there though; many of us may hoose to go off to college, go to a trade school, start working, or even take a gap year to dig deep in their interests to figure out what they want their career to be. Learning doesn't just stop after you finish highschool, it just ends up taking a different form depending on what you choose to do in life. If learning is such a big part of life; then how can parent of a disabled child best navigate their child's school to provide them with the tools and resources they need to be successful?



What are We Going to Cover 

 




In this blog, we are going to be covering a bunch of different topics that will provide you with the knowledge you need to be able to successfully navigate the school system to overall help your child be the best they can be. These topics will include;



What is an IEP plan?

What is a 5o4 plan?

What is the difference between these plans?

How can your child qualify for these plans?

What goes into each plan?

Good questions to ask during an IEP or 5o4 meeting 

The importantance of having your child in the meetings



From start to finish receiving an IEP or 5o4 plan takes ruffle  between 30-60 days to complete depending on the state. During this time there are many different steps that must take place before sitting down to write of a plan with the professionals. These steps include;

1.Understanding what an IEP or 5o4 plan is

2.Request an evaluation

3.Finding out if your child is eligible for services

4.Going over the results with the evaluation team

5.Voice an concerns

6.Sit down with the school to write the plan

7.Make sure the plan is carried out 

8.Follow up as nessasary

I know this may seem a little daunting; but it will defalently be worth it in the end. Now let's take a deeper look into what is involved in each of these steps.


Digging in Deeper

No one is born just knowing how to do something or what the steps are to complete a task. We have to learn it, practice it, apply it to our life, revise it, and then apply it back into our life again. Putting your child on an IEP or 5O4 plan is no different. As I listed up above the first step to completing this process is to do your research and information that will help you understand what an IEP or 5O4 plan is.


What is an IEP and 5o4 Plan?

What is an IEP plan?

An IEP (individualized education plan) is legal doccument that is renewed and revised once a year or sooner if needed. An IEP isguided by the Individuals with Disabilities Education Act (IDEA). This program provides special education and related services to kids who have a disability that affects their ability to learn in the same way as other kids. This allows kids to recieve the nessasary services they need to be successful. Some of these resources include;

Modification of curriculum

Classroom accommodations

Specialized instruction

Occupational therapy

Physical therapy

Speech therapy

Counseling

What is a 5o4 Plan? 

A 5o4 accomadation plan is a formal document that is guided by the Americans with Disabilities Act (ADA).  This plan doesn't require an annual review like an IEP requires. A 5O4 plan allows for kids with disabilities  to have access to accomodations that helps them improve their academic function.

Some of the resources that are built into this plan include;

Extended time or small group assistance during tests

Frequent breaks

Fidgets

Modified homework asthou a 5O4 plan may seem very close to the same thing; they are actually quite different. 







These are a few of the ways that an IEP and a 5O4 plan is the same and how they are different. For example, an IEP provides services such as physical therapy, occupational therapy, and speech therapy which is something that a 5O4 plan does not offer. I highly reccomend that when doing your research that you look and see what is offered with each plan to make sure you pervide the best resources for your child.

How to Qualify for an IEP or 5O4 Plan?

Now that you have gotten all the research out of the way; you should now have a good understanding of what an IEP/5O4 is and what the difference are between the two plans. The next step that needs to be taken is to get an evaluation done on your child to see if they qualify for these services.

 Somethings they evaluate is your child's 

  • Strengths and weaknesses in different subjects
  • Behaviors
  • Social skills
  • Performance on tests, assignments, and homework
  • Performance and engagement in the classroom
  • Social skills
  • Motor skills
  • Speech skills 
  • Health assessment ( vision test, hearing test, etc.)
  • Other assessments they feel are necessary


Along side an evaluation taking place; there are also a number of requirements that your child must have to qualify for IEP services. These include;

  • The student must have a disability or disabilities.
  • The student's disability/disabilities adversely affect educational performance.
  • The student’s unique needs cannot be addressed through education in general education classes alone – with or without individual accommodations and requires specially designed instruction.
  • A disability or disabilities that falls under one or more of these categories.

Much like the requirements to qualify for an IEP the state requires an evaluation to be done on students to see if they qualify for a 5O4 plan. Unlike the evaluation that is done durning the IEP process where they do a full evaluation to look at every aspect of your development like I listed up above; an evaluation that is done for a 5O4 plan is only a partial one that basically requires the evaluator to see the student experiencing disabilities that affect one or more major life activity. Some of the things that would be included in this type of evaluation include;

  • A review of their work
  • A review of their medical records  and evaluation report
  • Direct observation
  • Interview with student, family, and school personnel

If this is all they need then the evaluation will be over, but if they need more information then they might do a full evaluation like they do for getting an IEP. To be eligible for a 5O4 plan your child must

  • Have a physical or mental impairment that limits one or more major life activities in a big way. This can include things like
                        1) walking
                        2) breathing
                        3) eating
                        4) sleeping 
                        5) communicating
                        6) seeing
                        7) hearing
                        8) speaking
                        9) reading
                       10) concentrating
                       11) thinking
                       12) learning
                       13) standing
                       14) bending
                       15) lifting 
                       16) working
           


  • Have a record of such an impairment


  • Be regarded as having such an impairment


The data they collect during the time they spend observing your child will determine if whether they qualify for the services of the plan they were being evaluated on to see if they qualified. For more information on the evaluation process check out check out this article on Understood.org by Amanda Morin.


Both plans are put into place to overall accomplish the same goals of providing the resources that students need in order to be successful. They just do it in a different way with the IEP focusing on in proving everything from the learning experience, building on life skills, and helping students to accomplish their goals. A 5O4 plan focuses on providing studients with accomadations like taking breaks, extra time for tests, and fidgets to help them get the best out of their learning experience.



Finding out if your child is qualified for an IEP or 5O4 plan

You have done the research, your child has had an evaluation done by professionals from either the IEP program or the 5O4 program depending on which plan you are trying to get your child into, and now it's time to get the results.


Going over the results with the evaluation team.

This is the moment you have been waiting for the past week or so. This is the moment that your child's life will change forever. Ok, I know that was a bit germanic, but I could help myself. It is always fun to finally get the news you were waiting on for so long. In this portion of the process you will get with the evaluation team and they will share their observations, whether they are eligible for the services, and with give you the change to speak your concerns about moving forward or ask any questions you may have at that time.



*Make sure you voice your concerns*

This isn't a step in the process, but it is something you should do not matter what step you are currently at in the process . Don’t hold back because you are worried about bothering them everyday due to question, thinking you will remember your question until the next time you talk to them, or that it is a silly question to ask. The people at the school, district building, and even the people who did the evaluation would be happy to help you.



 Sitting down with the school and writing the plan

Are you ready to put the meat, cheese, and condiments on the the buns? This step is the most important part of the whole process. When you sit down with the school, IEP or 5O4 people, your child's teachers, and whoever else is involved it becomes the real deal. 


What goes into an IEP?

An IEP is generally a lot longer than a 5O4 plan because it covers more catigories that the child needs more help in than do students who are getting put on a 5O4 plan will in their learning experience. As stated in the name this is an individual learning plan, so what is put into your child's IEP will be a lot different than another kid's IEP. The basic topics that are written into an IEP during these meetings include;

  • Performance level (This is a summary that describes current specific, measurable, objective baseline information for each area affected by the disability.)


  • Goals (These are descriptions of what a student can reasonably be expected to accomplish within a 12-month period with the provision of special education services. Goals should be SMART: Specific, Measurable, Achievable Results, Time-limited.) 


  • Benchmarks and Objectives (Benchmarks are major milestones that specify skill or performance levels a student needs to accomplish to reach his annual goal. Objectives are measurable, intermediate steps between a student’s PLP and the annual goals established for the student.)


  • Assistive Technology ( This states extra technology avallible to the students as they need it.)

  • Description of Special Education Services (This indicates the time, frequency, and any related services that the student needs, as well as the amounts of time these services will be provided. The amount of time and areas in which the student will be removed from the general education setting are also identified.)



What goes into a 5O4 plan?


A 5O4 plan is not nearly as long in paper form as it is for an IEP because it covers fewer categories, but still just as important as an IEP. In a 5O4 meeting things that are written into the plan include;

  • What their disability or disabilities are
  • What major life activity or activities are affected by their disability or disabilities
  • How and when their accomadations will be used in the classroom
  • A list of accomadations you and your child need for their success. Some of these accommodations include;    
                1) preferential seating 
                2) extended time on tests 
                3) extended time on assignments 
                4) reduced home/school work
                5) verbal, visual, or technology aids
                6) modified textbooks
                7) video- audio materials 
                8) behavior management support 
                9) adjusted class schedules 
               10) adjusted grading
               11) verbal testing 
               12) excused latenes
               13) excused absences
               14) excused missed classwork
               15) pre-approved nurse visits
               16) accompiment to visits 
               17) Occupational or physical therapy 
     

These are just some of the different topics that are put into each plan. I highly recommend adding  every little detail of things that you can think of to put into the plan. I say this because a problem may seem very small to you, but it is still a problem non the less, so it's important to still put it in the plan so, they can work to address the problem with your child.


Good questions to ask during an IEP or a 5O4 meeting

It can be a little challenging trying to participate and work your way through one of these meetings; my parents went through this exact process when I was going through school.
 

Good questions to ask during an IEP meeting

  • What is the best time and way for me to contact you?
  • What are some changes in goals do you recommend and why?
  • What does my child's support look like on a daily basis?
  • What support will my child's classroom teacher be providing to meet these goals?
  • How do we plan to measure progress and communicate this progress?
  • What can I do at home to support these goals?

Good questions to ask during a 5O4 meeting 

  • In your opinion, what accomadations should we add to the list?
  • When and how will these accomadations fit into my child's daily schedule?
  • What is my child's responsibility when using their accomadations?
  • What are the consequences for my child misusing their accomadations while in class?
  • Do I need to provide the accomadations?
  • If I have to provide some of the accomadations, should I put them in their backpack or bring them into the teacher?
These are just a few of the many questions you can ask during these meetings. Don't worry about running out of time; an IEP meeting generally lasts anywhere from an hour to ruffly three hours and a 5O4 meeting lasts ruffly forty to sixty minutes depending on how long it tasks to discuss the information, write or rewrite the plan, and answer questions.

The importance of having your child attend the meetings

Throughout my whole school education experience I believe I always attended the IEP meetings with my parents.  No one knows your child better than them, so it is important to make them part of the conversation. This will allow them to engage by sharing their opinion of what they feel are their challenges and what they feel they need to be successful.

Resources I used in this blog

This is only a small portion of what there is to learn about IEP's and 5O4 plans. Some of the resource I used to find this information include;

Conclusion

Learning is the building blocks to life. There is many different ways that you can help your disabled child be successful in their education experience. For me, the biggest way my parents helped me through my education experience was sitting down with my school and getting me on an IEP plan.



Embrace Your Inner Child


If there is two things I have learned over the last several years is that I can be anything I want to in life and that life is too short to not live it to the fullest. I dont think we ever truly grow up, at least not when you are born with disabilities. Yes, we have to adult sometimes, yuck; but I think so many people get caught up in their day to day life that they forget or hide that inner child within them that allows them to have fun in life. All my life I have lived for the moments where I can let go of reality and live my life to the fullest by exploring, having as many experiences as possible,  and just having fun.


In this blog, I am going to share some of the most popular toys for kids with disabilities, hobbies I got into as a teen, and how you can embrace your inner child as an adult.


Popular Toys for Kids with Disabilities 


I never really realized how important playing is in a child's life. For me, I always viewed it as a chance to take a break from reality, play with friends, and have fun. Which is the point of having recess in school, weekends, and summer breaks; but there is more that goes into it than we think. During the time that kids spend playing with other kids in person it actually builds many different skills which include, but aren't limited to; learning how to socialize, following rules, sharing with others, problem-solving, let's them use their imagination, and helps develop communication skills. When I was younger, my mom did a good job of encouraging my sister and I to have an active lifestyle at an early age. Every opportunity we got for free time we would spend it outside riding our bikes or scooters, going on picnics, playing at the park, hiking, and playing make believe games. Other times when it was either too dark or cold to be outside we would draw, play board games,played with legos, played with barbies,played Just Dance on the TV, and played make believe games. We were constantly doing some form of play and very rarely were we on electronics unless we were working on school. I preferred this type of life style because not only did it get me outside; but it also provided me with different adventures that were different, fun, and allowed me to move my body. 


Story Time



 Wow! I was such a cute kid. My mom and dad always told me that I was funny, outgoing,and determined as a little girl; but I didn't really realize how much those characteristics came forward until my parents started telling me stories of my childhood. One of my top favorite stories is of one of the very few times I got frustrated with a situation. As a little girl I loved wearing overalls,not only where they easy for me to manage; but I also looked adorable in them. My top favorite toy in the world growing up was my Beanie Bopper Doll Collection that I slowly collected as gifts from family, friends, and I believe my parents said I even got dolls from people we didn't even know when I was in the hospital. I loved these dolls so much that everywhere I went, my dolls also tagged along. On one day inparticular I was playing outside with my dolls, of course and had them all piled up in my left arm. My parents told me that I would take a few steps and then drop one of my dolls. I would say " shit" as I picked up my doll and placed it back with my other dolls as I corrected myself " Dyssa, don't say shit" before I continued walking. This happened multiple times with each time me say shit, picking my doll up, putting it back with the other dolls, and correcting myself. I was so determined to have all of them with me, I am not sure why I didn't just put them in my stroller or shopping cart like I did the other times. 

Toys for Teens with Disabilities 


As I got older, I didn't really play with toys that often anymore, but I gained a big interest in doing different activities that made me use my brain like playing sudoku, doing word searches, crossword puzzles, and doing jigsaw puzzles. It was a chance for me to learn new things while having fun. In fact, I learned all the names of the states and their placement on the map by playing a learning the states game with my mom. I love doing these activities because yes they might not be a physical toy like a doll is, but it is more of a hobby and in my eyes when you enjoy something as much as I do with doing different types of puzzles it was my new version of playing with toys.


Toys for Adults with Disabilities 



Who says toys are just for kid? In my family we are basically a bunch of adult children with 99% of our life doing fun things and being sarcastic;rarely are we ever serious. For adults, toys come in all shapes and sizes which includes; hobbies, tools, and trying different activities. My idea of embracing my inner child is getting out in nature trying new things, hiking, riding on our UTV, and splashing around in a river. With these activities we explore nature, let go of reality, make memories, and have fun; which is an important part of living your best life possible.

Conclusion 

I don't think we ever truly grow up. Yes we get older, but age is really just a number. Within us we will always have a part of us that is very much child like that looks for the fun in everything we do. I believe it is a matter of fact of making time in your day to day life to disconnect from reality. For many of us, we are so focused on what we need to do every day that we forget or don't make the time to embrace your inner child; which after a while it can cause you to feel like you have a void in your life, can make you feel disconnected from yourself, and can cause you to push your child like self further away; which makes you a person who lives a serious life.  I challenge you to make time in your schedule to embrace your inner child  by doing something you love because in truth who wants to live a life were they are serious all the time?






A Parent's Perspective


As many of you have probably noticed over the years is that our disabled community has grown and continues to grow each day. In my opinion, I feel like the media does a good job of providing many different resources for communities all over the world with disabilities; but I feel that they leave out an important part of sharing the perspective of how children, teens, adults, and parents of children with disabilities see the world. So far on Alyssa-bilities, we have talked about how children, teens, and adults with disabilities see the world; but we haven't really discussed how the parents of children with disabilities see the world. 


In this blog, I am going to be discussing the parent's perspective, challenges of being a parent of a disabled child, and how fun it can be to take care of a disabled child.


A Parent's Perspective 



In my opinion, I think being a parent of a disabled child has to be one of the hardest, but most rewarding jobs in the world. Yes, it will be challenging sometimes; but in reality isn't everyone's life a little challenging at one point or another? From the beginning, when your child is first born you may feel emotions of happiness, excitement, and even terrified; but when the doctors come back and diagnose your child with having a disability other emotions may come up which can includes feelings of devastation, uncertainty, and maybe even the feeling of being lost. For the first day or two while still in the hospital you may get some help from the nurses and doctors with taking care of your baby while they monitor both of you to make sure no problems arise, but as soon as they release you from the hospital it's just you and your baby against the world without any instruction manual to help you along the way.

Sounds pretty scary, huh? 

For my parents, it was quiete the rollorcoaster ride before I was even born with all of my medical problems and having a stroke in utero. This already brought my parents and doctors great concern for my health and even with that I was 9 days past my original due date and took a while before I was ready to be born that my mom's doctor left to go file his taxes while another doctor filled his place for the time being. Sorry mom, for putting you through that torcher. After I finally arrived, the doctors did a physical on me and diagnosed me with having Cerebral Palsy ; a congenital disorder that effects movement, muscle tone, or posture. Just like any other parent, I am sure that this left my parents feeling uncertain and lost about what the next steps they should take in raising me with all my disabilities. It's not like I was born with an instruction manual titled  " How to Raise a Child with Cerebral Palsy," although that would be nice. As a baby, I slept most of the time, didn't cry unless I had something going on with me, and was very playful when my mom forced me to stay awake ,so I could eat and spend time with them. As I started getting a little older and my seizures really started was when some challenges appeared in my parents life.

Challenges of Being a Parent of a Child with Disabilities 

While doing research on the topic of points of views from people who have a disability or someone who is taking care of someone with I disability I found a common list of challenges that applied with both my family and may also reveal itself into your life as you either begin or continue your journey as a parent of a disabled child.  Some of these challenges may include but aren't limited to;

  • Feeling like your all alone 
  • Juggling  everyday life 
  • Making friends
  • Making time for yourself and your spouse

Feeling like your all alone 

For my parents, these were just a few of the challenges that popped up on almost a daily basis. Through the course of a couple of years when my seizures first started and escalated ,they searched everywhere for answers; online, through doctors offices, and even asked for help from family and friends; but none of them seemed to be able to give them any help or answers. For the longest time they felt feeling of uncertainty of how the future would turn out, lost about what steps to take next,and lonely because here they were trying to take care of a special needs child that had many different disabilities and on top of that,had super severe seizures that would be considered a medical emergency because some of the episodes would last longer than 5 minutes which is already super dangerous; but the scary part was when the episodes lasted an hour or more. I was really being looked after by God during these times because after each episode I continued to live life like nothing happened.

I can't come close to knowing how my parents truly felt or how they got through this challenging time on their own. Back when I was a little girl, my parents didn't really hear of children having disabilities ,non the less having a support group for parents of children with disabilities because it was still pretty new to the world, so everything they tried was based on different trials and errors. It wasn't until my family learned more about what I was going through and how we figured out how to live a somewhat normal life that we realised between talking to other parents of children with disabilities and hearing about people going on Oprah to describe very similar situations that other parents where having with their child that we realised that we were not alone.

Today, there have so many parents of child with disabilities that they have different Support groups to help parents by providing a like minded community and resources to help each other out in times of need.

Juggling Everyday Life 

During the times that I wasn't living in the hospital brought up a second challenge of juggling everyday life that my mom had to find a way to overcome. When your a parent of a disabled child life can feel kind of hectic sometimes with juggling school, IEP Meetings or 5o4 Meetings, chores, grocery shopping. 
The best ways my mom solved this challenge was to make a schedule that listed all of my doctor's appointments, IEP Meetings, and times she would go grocery shopping. The second way she found time to do things like chores was when I would sit down to watch my favorite cartoon which was Dora at the time. 

Making Friends 

One of the hardest parts of being a parent of a child with disabilities is trying to make and maintain friendships. At least when I was younger most people didn't really understand what disabilities were, so they didn't take the time to get to know me. This was challenging for both me and my parents because we didn't really connect with other people who were like minded.  On a few occasions, I would find other kids that took the time to know me and made really good friends with them. These times gave me a friend to play with and my parents would make friends with their parents.

Another way you can make friends as a parent with disabilities is to engage with the community and join some clubs or a support group that is geared towards parents of disabled children.


Making Time for Yourself and Your Spouse 

Raising a child with disabilities is really challenging when it comes to maintaining a relationship with both yourself and your spouse. Many people may think that because they have a disabled child that they need to spend all their time with their child, but what they dont realise is that the are neglecting time for themself and their spouse which can cause problems in that relationship. When I was little, yes I spent time with my parents, but I was also very much independent and would play by myself, go down in the middle of the night when I couldn't sleep and either stacked things up to try to open the door to go play outside or turned on the TV to watch infomercials.

I highly recommend that each day you set aside time for yourself and for your spouse whether you have your kid play on their own or have someone else watch them to ensure you maintain a healthy relationship with yourself and your spouse.




The Joy of Parenting a Child with Disabilities 

Parenting a child with disabilities is challenging, but at the same time it can be a fun experience. When I look at myself and other disabilities children, I see characteristics that other children don't normally have when they are growing up. Some of these characteristics include;
  • They teach you new ways to look at different situations and people
  • They are generally happy even when things are challenging
  • They see joy in the simple things
  • They look forward to experience rather than materil objects
  • They are more mature than other kids
  • They have their own ways of seeing the world 
  • They have their own way of playing and joking
  • They figure out how to do things in their own way
  • They have a playful personality almost all the time 
These are just a few of the characteristics that you can experience when parenting a child with disabilities.

Conclusion

Parenting achild with disabilities is a really challenging job. There will be times that are challenging and times that are a blessing. The thing I want you to remember is that you are not alone and that there are many resources that can help you along the way. Children with disabilities are unique in their own ways and it can be a wonderful journey to have the opportunity to raise a child with disabilities.