Moving Mountains: Advocating for My Son’s Individual Education and Health Plans

By a calm yet tenacious rare mom, Samantha Desenches

I am the mother to an almost-three-year-old named Desmond. Since the day he was born, I have been by his side, providing unconditional love and significant medical support around the clock. This month he will head to preschool and be held and cared for by his community, as is his right. For any parent who has been through an individual health plan or an individual education plan (IEP), you know it is no simple task. I would love to share what this has been like for me and my son.

I started planning my son’s transition to preschool a little before his 2nd Birthday, a year ago in May. I’m a planner and, with a medically complex child that has a significant developmental delay, I felt like there was not enough time in the world to prepare for this day. First, I reached out to the school’s student services director to find out more information on the special education preschool for our school district. Second, I attended a workshop the Federation for Children with Special needs was having virtually called “Turning 3 Essentials,” which outlined the steps I would need to take to get my son the free and appropriate education he is entitled to. Little did I know, this would be tantamount to moving mountains.

After attending the training, I let my son’s Early Intervention coordinator know that I wanted his referral for preschool to be put in once he was 2 years 3 months old, since that was the earliest time possible. The referral was placed, and I was contacted by the coordinator at the school. We set up a virtual meeting with Early Intervention, the school’s student services director, and our family.

Desmond was hospitalized again as the date for the meeting with the school approached. Nonetheless, I was excited for the meeting. My child deserves to be among his peers. I was hopeful as I logged onto the virtual meeting from Desmond’s hospital room; but then, the coordinator from the school said with a scared look on her face, “I think it’s best that Desmond go to school out of district.” I didn’t even know how to respond. I felt frozen. It was the first time I saw someone terrified of my son, a person that brings me so much joy. I honestly don’t remember much of the rest of that meeting because at that point I was on autopilot. I held in my tears because I hate crying in front of others and I was in a hospital room with nurses in and out.

Moments after the meeting ended, doctors came into my son’s room because his respiratory status was declining and we were being moved to the ICU. I was asked to sign consent forms because if his status didn’t improve, doctors were going to have to put in a breathing tube. Some days it all just piles up on you until you can’t hold back the tears. I went into the bathroom and cried to let it all out. Afterwards, I felt well enough to take on the rest of the day. What other choice does a mother have?

“My little fighter was pushing through. His strength gives me the strength to be his mom and make it through each day.”

Desmond ended up slowly improving and not needing the breathing tube. My little fighter was pushing through. His strength gives me the strength to be his mom and make it through each day. After talking with his Early Intervention coordinator, I stood my ground and decided I did not want Desmond placed outside of our school district. My husband and I both wanted him to be a part of the community he lives in and to go to the public elementary school.

I made an in-district placement a goal and started to plan. I knew I would need to gather resources to help me reach out to his goal. I asked for a referral to MASSTART(a Massachusetts state agency that helps in coordinating with schools for medically complex children). I scheduled a follow up meeting with the school in December, and attended the “Turning 3 Essentials” training for a second time.

At the training, I found out that Desmond’s evaluations with the school could begin at 2 years 6 months. However, the school coordinator told me that they would not start until 2 years 9 months. I wrote an email back letting her know that they could, in fact, start now; and, I cited the training from which I received my information. I have been learning how to be proactive in an informed way while attending the Family Leadership Series (a series of workshops with other parents/caregivers that have a loved one with a disability where you learn to be a better advocate). I received an email back with an apology and the form to fill out a consent to evaluate my son; and, with that, the time I had to make sure the school could meet my child’s needs doubled. My advocacy development work was paying off.

The school evaluations started in December. A lot of paperwork and people came through our home to meet Desmond. It seemed to me that none of them understood my son, and I had to ensure they could, so I created an “All About Me” book. The book incorporated pictures of Desmond doing various things he enjoyed, his equipment, how he communicates, his dislikes, and information about his many diagnoses. I sent the book to everyone working with Desmond and the special education team at the school. I got enthusiastic responses from everyone that it was a great way to get to know him. We now make sure Desmond’s “All About Me” book is always available to doctors and nurses working with Desmond at the hospital as well.

In January we set up a time to go into the school and meet with all the preschool teachers on a Friday when there were not any children in the program. We sat in a circle telling them more about Desmond and letting them ask questions they had. Someone went up to Desmond and said to Desmond, “You are going to teach us so much and we will become better for it.” We left that meeting finally feeling like he was being accepted and included. That was the moment I realized that we had come so far in this process. All the time and preparation was working towards the ultimate goal of having our son welcomed into the local school system with the support that would make it successful for everyone involved.

Then in February, after checking in about what their plan would be for nursing care, I got news that the schools coordinator was no longer going to be working there and had accepted a position somewhere else. When I got the news I automatically became anxious about losing all the progress we had made. This process is dependent on trust and the relationships we are able to develop with the people who will coordinate Desmond’s care needs. I brought my concerns to the Early intervention coordinator and she helped me figure out who my new contact was with the school.

The new school coordinator set up a meeting in March to come to our home and meet Desmond with his Early Intervention coordinator. The meeting was wonderful. She asked questions and was very proactive about coming up with a plan. At the end of the meeting we had a plan for Desmond’s nursing care and scheduled Desmond’s IEP for the beginning of April. I sent out the invitation to many of Desmond’s service providers so they could attend the meeting.

I was extremely nervous on IEP day. So much preparation and time had gone into this day. The IEP was virtual. There were so many little rectangles filling the screen, the faces of all the people gathered to plan for Desmond. The IEP was structured a little differently than anyone at the school had experienced before. The sheer number of people involved was unprecedented; even the principal was included in decision-making. To meet my son’s needs, we expanded the boundaries of inclusion. While initially it was a battle, in the end we all worked together and came up with a plan we all felt would be best for Desmond. I could not have asked for a better outcome. I finally felt like I could breathe.

As I write this today we are at the end of April and Desmond is scheduled to start the Monday after his 3rd birthday, just two weeks away. I just came home from our second day of training the teachers and nurse at the school. Desmond spent time in his new classroom and was awake the whole time taking in all the sounds and even opening his eyes a little. He had many smiles, clearly enjoying these new experiences. He is included, a part of his community and even though we still have a lot to figure out, we are showing others all the possibilities.

With an open heart and open mind you can and will move mountains for your children!

SAMANTHA’S CHECKLIST:

Deep breath. This is a marathon, not a sprint.
Start early.
Educate yourself - seek out information via webinars, books, other parents, and/or Early Intervention staff.
Establish your child’s educational and personal goals - IEPs are dictated by goals; aim high.
Don’t go into an IEP meeting alone.
Network with other parents. They become a positive voice, saying, “You can do it!”
Help the school understand your child; perhaps, make an “All About Me” book.
Trust yourself, your voice. As your child’s greatest advocate, your opinions are valid.
When you meet resistance, use partnering language, such as, “what can I do to help you?”