Wednesday, September 4, 2019

Victory at School : Parenting a Child with a Disability or Illness



Being a parent is an incredible blessing that is not for the faint of heart.  Our children are our greatest gifts, designed with unique personality traits and gifts.  They also come with individual challenges and struggles.   When parenting a child with a disability or chronic illness, we often face our own grief and heartache in watching our children struggle and suffer.   It is a difficult place to be; however, we are our children's primary support system and greatest advocates as parents.  It is our responsibility to love them unconditionally, come alongside them, and help them to achieve victory over challenges in different aspects of their lives.  When I describe victory, I'm not talking about "fixing" them or changing who they are.  I'm not talking about changing circumstances beyond our control as parents of children with special needs.  Victory means helping them to be their best and feel their best despite the challenges, pain, and suffering they are enduring with their disability or illness.  That may mean giving up some of our ideals and expectations as well as overcoming any denial or grief that may be holding us back in providing the support they need.  In whatever capacity we are called, we can be victorious.

Daycare centers, schools, and education systems are often some of the most significant areas of influence and challenge for our children--areas we must stand firm in advocating for our children and covering them in prayer.  My husband and I have been navigating developmental and disability education services for over eighteen years, and we have now experienced the full spectrum of these services from the Birth to Three program to college disability services.  Although we have been open with our friends and family about our children, until recently we haven't been publicly open about specific disabilities out of respect for their privacy.  We also did not want our child to be labeled or judged; however, our 20-year-old daughter recently decided to come out publicly regarding her struggles and strengths with being on the autism spectrum.  We couldn't be prouder of her for taking the risk to share her testimony with others.  Additionally, our daughter and her brother have also been battling chronic illnesses from Lyme disease and co-infections, as well as with trauma from head and neck injuries.  It is excruciating to watch a child suffer with these conditions, and I would much rather take on their pain and suffering for myself than have to see them hurt.

We have been blessed to be a part of a small-town school district that is very caring and willing to work with us and our children.  I can't say that all of our experiences have been positive as early on, we encountered both a classroom teacher and a special education faculty member that were not only uneducated about our daughter's developmental delays, but insisted that we needed to "fix" her so she wouldn't be a "burden" in the classroom.  This was partially due to a misunderstanding, misdiagnosis, and misuse of the school's Individual Education Plan (IEP).  Fortunately, the special education faculty member decided to move on to a different school district the following year and was replaced with someone more aware about our child's disability.  Mrs. Malecek immediately picked up on where the miscommunication was and spoke up for our daughter's individual needs.  She was willing to advocate for our child, help teachers understand the situation, and guide us as parents as to how we could be the best for our child as well.   Mrs. Malecek stayed in touch with our daughter throughout her education, frequently encouraged her to share her unique gifts/talents, and expressed her delight when our daughter graduated with honors and received several scholarships for college.  We still hold a special relationship with her after all these years.



We have also experienced working with faculty in regards to the struggles with chronic illnesses, which required us to schedule meetings with teachers and disability service coordinators at different school settings to discuss how we can best serve a child's needs when battling chronic pain, fatigue, and neurological challenges from Lyme disease, injuries, etc.  This past year, our middle school principal and assistant principal have exceeded our expectations in going way above and beyond the call of duty to encourage and support our son.   When our son was at his lowest point, I shared one of my blog articles in order to help school faculty understand the underlying suffering and pain that a child with Lyme disease might be experiencing.  It was very eye opening.  Facing disabilities and chronic illnesses can become a tough situation for parents and school staff alike; however, when we work together, we can rise above the circumstances.

How do we achieve victory in the school setting?  It takes a collaborative effort between the student, teachers, faculty, and the parents.  It is important to have open and regular communication.  It is imperative to speak up for your child but at the same time do whatever you can to view the situation from the school faculty's perspective.  Open and honest communication is a must.

WHAT CAN PARENTS DO?
  • Speak up for your child as you are their best advocate
  • Take a careful look at the child's Individual Education Plan or IEP to be sure it is accurate, especially look for what diagnosis or disability code is on the IEP (be cautious if your child is put under a "behavior" classification if there isn't clear parameters about his/her diagnosis which could skew the perception of the child's disability)
  • Recognize that teachers and school faculty are human--they might be dealing with large classrooms, budget issues, and other things out of their control that could cause frustration at times--everyone has good and bad days
  • Try to keep communication as positive as possible, work with the school on coming up with feasible solutions for helping your child succeed
  • If a situation arises, always get both sides of the story--things aren't always what the appear at first and miscommunication happens
  • Encourage your child to be as independent as possible in the classroom setting, set positive goals with them
  • Don't minimize your child's frustrations and worries as this only makes them feel like you don't believe them
  • Recognize that bullying is common for children with disabilities, especially those on the spectrum who struggle with social issues--your child needs to have a safe place at home to feel loved and supported
  • If your child is dealing with a chronic illness but doesn't qualify for an IEP, you can still work with the school faculty on other options and disability accommodations such as a 504 disability plan
  • Look into other specialized services outside of the classroom such as additional physical, occupational, or speech therapy as well as therapies for sensory processing disorders, and/or social skills, vision therapy, tutoring for specific learning disabilities, etc.  (these therapies and services can be especially beneficial early on-- the goal is to help the child to thrive or feel their best, not "fix" or "cure" them)
  • As your child reaches their teens, give them more control over their education as you shift to a mentor/coaching role--encourage them to speak up for themselves in the classroom and ease into a more independent role as they finish high school (this will help them to be more prepared for college)
  • When your child is looking at a college or university, help them investigate what type of disability accommodations are available and who to contact to discuss individual needs (in a college or trade school setting, the student is in full control of how they utilize their disability services)

WHAT CAN TEACHERS AND SCHOOL FACULTY DO?
  • Look at the child's strengths and focus on what they can, NOT what they can't do
  • Rise to the challenge of modifying your educational environment to accommodate their individual needs instead of seeing their disability as a hindrance to the classroom
  • Learn what subject child is passionate about or what clicks for them and build on that (for my daughter, it was the music program)
  • Find a teacher that connects with the student at some level (my daughter had a special connection with her band and choir teachers, and she observed a fellow student who was somewhat impulsive thrive when he had a personal connection with both the shop teacher and janitor which made all the difference!)
  • Be aware of your conversations in the classroom as other students may be listening, especially if you are discussing a particular student with a disability
  • Be aware that students do notice when a child has accommodations and they will perceive them in a different light (bullying is common in the classroom, gym, playground, and cafeteria--especially those who struggle with social skills)
  • Be patient with the child who may be struggling with low self-esteem and frustrations with their disability
  • Recognize that parents might be dealing with their own emotions of grief, denial, and misconceptions about their child's situation
  • Find ways to help the child feel more in control of their education and their privacy (involve them in organizing their desk/locker, allow them to opt out of doing a group project with other IEP students if they wish to do something independent, etc.)
  • Team up with the child and their parents to come up with positive solutions, allow them to have feedback on the IEP and other disability accommodations

WHAT CAN THE DISABLED AND/OR CHRONICALLY ILL CHILD DO?
  • Be honest and real about what you are going through at school and in the classroom, don't hold back or hide your frustrations and worries but find a trustworthy adult such as a parent, teacher, counselor, or youth pastor to talk it through
  • Speak up for yourself -- aside from your parents, you are your best advocate
  • Recognize that your teachers and your parents are both human--they will have good and bad days as well as misunderstandings about your situation
  • Strive to be as independent as possible in the classroom; however, recognize your limitations and ask for help when you need it
  • Connect with other students in similar situations--maybe you can help someone who is struggling by honestly sharing your experience
  • Take time to educate yourself about your specific disability or illness as knowledge is power!
  • Figure out what makes you click, what are you interested in-- as you get older, you can take classes and/or join organizations that revolve around that interest (my daughter claims that band saved her when she was going through some very troubling times, and she took every music class possible and engaged with her band/music teachers to discuss music composition, instrument repair, and other activities revolving around her interests)
  • It may be difficult to rise above the challenges, especially when it comes to bullying at school; but it will get better, especially after high school (it may not seem like it now but trust me it will!)

_______________________________


JOYFUL TREASURES:  Love your Child Unconditionally!


" There needs to be a lot more emphasis on what a child can do instead of what he cannot do."  --Temple Grandin

My daughter wasn't interested in typical teenage girl pursuits like dating, parties, and prom; however, I wouldn't trade her brilliant quirky talented personality for anything!  Sometimes we need to let go of our expectations and just love our children.   When we allow them to shine at what they are good at, anything is possible!
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