Moving Mountains : Plaidoyer pour les plans d'éducation et de santé individuels de mon fils

May 10

Par une maman rare, calme mais tenace, 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 a été de nouveau hospitalisé à l'approche de la date de la réunion avec l'école. Néanmoins, j'étais excitée par cette rencontre. Mon enfant mérite d'être parmi ses pairs. J'étais pleine d'espoir lorsque je me suis connectée à la réunion virtuelle depuis la chambre d'hôpital de Desmond, mais la coordinatrice de l'école m'a dit d'un air effrayé : "Je pense qu'il est préférable que Desmond aille dans une école hors district." Je ne savais même pas comment répondre. Je me suis sentie figée. C'était la première fois que je voyais quelqu'un terrifié par mon fils, une personne qui m'apporte tant de joie. Honnêtement, je ne me souviens pas de grand-chose du reste de cette réunion, car à ce moment-là, j'étais en pilotage automatique. J'ai retenu mes larmes parce que je déteste pleurer devant les autres et que je me trouvais dans une chambre d'hôpital avec des infirmières qui entraient et sortaient.

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?

"Mon petit combattant est allé jusqu'au bout. Sa force me donne la force d'être sa mère et de traverser chaque jour."

Desmond a fini par s'améliorer lentement et n'a pas eu besoin du tube respiratoire. Mon petit combattant a résisté. Sa force me donne la force d'être sa mère et de faire face à chaque jour. Après avoir parlé avec son coordinateur d'intervention précoce, j'ai tenu bon et décidé que je ne voulais pas que Desmond soit placé en dehors de notre district scolaire. Mon mari et moi voulions qu'il fasse partie de la communauté dans laquelle il vit et qu'il aille à l'école primaire publique.

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.

Les évaluations scolaires ont commencé en décembre. Beaucoup de paperasse et de personnes sont venues chez nous pour rencontrer Desmond. J'avais l'impression qu'aucun d'entre eux ne comprenait mon fils, et je devais m'assurer qu'ils le comprenaient, alors j'ai créé un livre "Tout sur moi". J'ai donc créé un livre "Tout sur moi", dans lequel j'ai inclus des photos de Desmond faisant diverses choses qu'il aime, son équipement, sa façon de communiquer, ce qu'il n'aime pas et des informations sur ses nombreux diagnostics. J'ai envoyé le livre à tous ceux qui travaillent avec Desmond et à l'équipe d'éducation spécialisée de l'école. Tout le monde m'a répondu avec enthousiasme que c'était une excellente façon d'apprendre à le connaître. Nous nous assurons maintenant que le livre "Tout sur moi" de Desmond est toujours disponible pour les médecins et les infirmières qui travaillent avec Desmond à l'hôpital.

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:

Respirez profondément. C'est un marathon, pas un sprint.
Commencez tôt.
Educate yourself - seek information via webinars, books, other parents, and/or Early Intervention staff.
Fixez les objectifs éducatifs et personnels de votre enfant - les PEI sont dictés par des objectifs ; visez haut.
Ne vous présentez pas seul à une réunion du PEI.
Créez des réseaux avec d'autres parents. Ils deviennent une voix positive, qui dit "Vous pouvez le faire !".
Aidez l'école à comprendre votre enfant ; vous pouvez par exemple créer un livre "Tout sur moi".
Ayez confiance en vous, en votre voix. En tant que meilleur défenseur de votre enfant, vos opinions sont valables.
When you meet resistance, use partnering language, such as, “What can I do to help you?”