Mover montañas: La defensa de los planes individuales de educación y salud de mi hijo

May 10

Por una madre rara, tranquila pero tenaz, Samantha Desenches

Desmond, a medically complex child, in a stroller — Samantha’s child, Desmond

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 and 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 volvió a ser hospitalizado cuando se acercaba la fecha de la reunión con la escuela. No obstante, estaba emocionada por la reunión. Mi hijo se merece estar entre sus compañeros. Estaba esperanzada mientras me conectaba a la reunión virtual desde la habitación del hospital de Desmond; pero entonces, la coordinadora de la escuela dijo con una mirada asustada: "Creo que es mejor que Desmond vaya a una escuela fuera del distrito". No supe ni cómo responder. Me quedé helado. Era la primera vez que veía a alguien aterrorizado por mi hijo, una persona que me da tanta alegría. Sinceramente, no recuerdo mucho del resto de esa reunión porque en ese momento estaba en piloto automático. Me aguanté las lágrimas porque odio llorar delante de los demás y estaba en una habitación de hospital con enfermeras entrando y saliendo.

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. Afterward, I felt well enough to take on the rest of the day. What other choice does a mother have?

"Mi pequeño luchador salió adelante. Su fuerza me da la fuerza para ser su mamá y salir adelante cada día".

Desmond acabó mejorando poco a poco y no necesitó el tubo de respiración. Mi pequeño luchador estaba saliendo adelante. Su fuerza me da la fuerza para ser su madre y superar cada día. Después de hablar con su coordinador de Intervención Temprana, me mantuve firme y decidí que no quería que Desmond fuera de nuestro distrito escolar. Mi marido y yo queríamos que formara parte de la comunidad en la que vive y que fuera a la escuela primaria pública.

I made an in-district placement a goal and started to plan. I knew I would need to gather resources to help me reach 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 and 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 who 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.

Las evaluaciones escolares comenzaron en diciembre. Un montón de papeles y personas pasaron por nuestra casa para conocer a Desmond. Me parecía que ninguno de ellos entendía a mi hijo, y tenía que asegurarme de que lo hicieran, así que creé un libro "Todo sobre mí". El libro incluía fotos de Desmond haciendo varias cosas que le gustaban, su equipo, cómo se comunica, lo que no le gusta, e información sobre sus muchos diagnósticos. Envié el libro a todas las personas que trabajan con Desmond y al equipo de educación especial del colegio. Recibí respuestas entusiastas de todos, diciendo que era una gran manera de conocerlo. Ahora nos aseguramos de que el libro "Todo sobre mí" de Desmond esté siempre disponible para los médicos y las enfermeras que trabajan con Desmond en el hospital.

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 were 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 school’s 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.

Rare mother Samantha and her medically complex son snuggling and sleeping together on a sofa chair bed under cozy blankets — Rare mom Samantha and her child snuggling

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 nurses 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:

Respira hondo. Esto es un maratón, no un sprint.
Empieza pronto.
Educate yourself - seek information via webinars, books, other parents, and/or Early Intervention staff.
Establezca los objetivos educativos y personales de su hijo: los PEI están dictados por objetivos; apunte alto.
No vayas solo a la reunión del IEP.
Establecer una red de contactos con otros padres. Se convierten en una voz positiva que dice: "¡Puedes hacerlo!".
Ayude a la escuela a entender a su hijo; tal vez, haga un libro "Todo sobre mí".
Confía en ti mismo, en tu voz. Como el mayor defensor de tu hijo, tus opiniones son válidas.
When you meet resistance, use partnering language, such as, “What can I do to help you?”