School - Our Journey So Far

Becca just started kindergarten. I thought I was ready. After all, she was in Pre-K for two years and we were all quite used to the school routine for some time. But somehow, this feels different. I dropped off Becca at her new school, in her new classroom, with her new teachers, and faced such a long walk home. What if she doesn't like it? What if her new teachers don't know how to relate to her? What if she freaks out when she goes there and doesn't see her regular teacher, who had been with her for so long that she had become like part of the family? Questions flooded my mind as I faced what felt like an eternity - those six hours between 8am and 2pm on the first day of school.

This scenario is all-too familiar for all parents when their children are first starting school. But the anxiety is amplified for parents whose children have additional support needs. Becca is nonverbal, which poses additional challenges as she cannot tell us if something happened at school. We rely on observation, reports from the school itself, her attitudes when she enters and exits school, pictures that come in from the school app, and other nonverbal cues to understand what she might be experiencing while she is at school.

The Beginning of the Journey: Early Intervention and Diagnosis

My husband and I first noticed signs of Autism when Becca was only ten months old. We immediately contacted our pediatrician who told us that ten months is very early to screen for Autism; however, if by eighteen months we still had concerns, she would make a referral for Early Intervention Services.

Becca started developing words around 12 months old. She would say "ball", "blue", "mama", "papa", "black", and a few others. But we noticed that she would say the word but not fully associate meaning to the word (except for "mama" and "papa"). So she would say ball, but if I asked her to toss the ball, or where is the ball, she would not quite understand what I was asking. By sixteen months old, she had completely stopped speaking any words - a phenomenon I later learned is known as Autistic language regression, and it affects about 30% of children on the spectrum.

When Becca was 18 months old, we were referred for Early Intervention (EI) Services. EI conducted various assessments and evaluations, and we received the official diagnosis just three months shy of Becca's 2nd birthday.

I will say this: no amount of suspicion, speculation, research, or preparation can truly soften the blow of receiving the diagnosis. So many questions: what will her future look like? Will she ever live independently? Will she ever reach her developmental milestones? Will I ever get to have a conversation with her, or take her to a movie, or do all of the things that I dreamed of doing with my little girl when I found out I was pregnant? How did this happen?

Indeed, that initial diagnosis is tough. But we can't stay there. Because even while we are "in our feelings", our children continue to need us. This journey is not for the weak. We have to roll up our sleeves, tie up our hair and get to work. And that is just what we did.

My advice to anyone at the very beginning of this journey: do not take the approach that you should just "wait and see". If you have concerns, request the evaluations. As parents, we have the right to request these evaluations, and to be copied on the results. If you "wait and see", you are missing out on valuable time that your child could be receiving services. If your pediatrician is dismissive, push back. That is your right as a parent. We have the right to give our input on which organizations we want to conduct the evaluations, we have the right to work with the EI providers on the specific schedule that would work for our children. Please read all materials that they send to you and ask your questions. You may not be their favorite person for it, but they will know that you are there advocating for your child.

After evaluation, EI wanted to provide 40 hours a week of intensive therapy to Becca. I pushed back and told them that was too much. We reduced from 40 hours to 12 - 10 of ABA (Advanced Behavior Analysis - a therapy that teaches Autistic individuals how to behave appropriately to maximize opportunities for learning and socialization), 1 of speech and 1 of occupational therapy. And we saw a lot of progress, the trick is consistency (not necessarily the number of hours).

Aging Out of EI: To School or Not To School

Children age out of Early Intervention services at age 3.

When they are about 2.5 years old, Early Intervention initiates the conversation around preschool. Children are not required to attend preschool, but for those who are eligible for services, they receive their services for free at school. If your child does not attend preschool but you still want them to receive services, you will have to find service providers that are either private pay or accept your health insurance.

The decision on whether to move forward with preschool is individual and will depend on what works best for your family. In our case, we enrolled Becca in a pre-K program that works specifically with children on the Autism spectrum. She was recommended initially for a 12:1:1 (12 students in the room with 3 staff), but that was too overwhelming for her, so she was moved into an 8:1:1 instead, and there she thrived for two years until she was ready to move on to kindergarten.

When Becca started preschool, the school and the education department conducted a new round of evaluations. Just because a child qualifies for certain services in EI does not mean that the child will qualify for the same services in preschool. So it is important that we allow our children to complete all evaluations so that their educational plan can reflect their most updated level of functioning. In preschool, Becca's classroom was fully ABA-compliant, she retained speech and occupational therapy, but also qualified for physical therapy. While it may be difficult to have conversations with the school around our children needing additional support services, it is important not to shy away from them. The goal is for our children to get all of the support that they need - my philosophy was to always be as honest as possible with the evaluators and to allow Becca to receive any services for which she is eligible.

Preschool also added a new experience that we did not experience in EI - parent/teacher conferences and report cards/progress reports. In the beginning of our journey, I always HATED receiving Becca's progress report. I felt like it never fully captured all of the wonderful progress that I know Becca was making at school and at home. Over time, I learned to take these reports for what they are: a snapshot of what Becca does in school on the specific dates of her evaluations. No professional and no progress report can tell me who Becca is. I am the expert on my child. This isn't to diminish the importance of these reports, but rather to put them into context. In cases where I felt that the reports were inaccurate, I started adding notes, emails, addendums that I wanted attached to the progress reports to provide additional context or to correct what I felt was incorrect on the report. Why is this important? Because these reports feed into Becca's individualized education plan (IEP), which outlines the goals that Becca is to achieve each year. I do not want to waste precious time working on goals that we have already met, simply because she didn't demonstrate mastery of the skill when a stranger asked her to complete a task. It is my right as Becca's mom to have input on the development of her goals; and it is your right as a parent to make sure that you are comfortable with the services that are being provided to your child. You are the expert on your child, you are your child's first teacher. Always remember that!

Kindergarten Application and A Fully Sensory Program

The Kindergarten application process has changed so much from the time I started school. Now there are online portals where you can submit applications to the specific program you're looking for - and if your child is receiving special education services, the process is a little more complicated.

When Becca was approaching graduation from preschool, her educational file was referred to our local school district who took over the process of conducting updated evaluations. They visited her preschool, interviewed her teachers, and we had to take her to a school in our local district for a psychiatric evaluation. Based on the results of these evaluations, they make recommendations for specific classroom sizes and educational programs that would meet the need of the child.

Becca's recommended program was a fully sensory program available to students with high support needs. She has a small classroom size (maximum 6 in a class) and has a full-time speech therapist and paraprofessional to infuse individual and group speech therapy in all instruction. I am thrilled that she is part of this program - I visited on the first day and got to see first-hand how the teachers interact with the kiddos. One student had a full meltdown after her mom dropped her off, and the way these teachers were able to meet that child where she was, help her calm down, and integrate her back into the class with the other children, was both impressive and reassuring. And when I pick up Becca from school, she is always happy, in a great mood, and gives us no issues going to school the following day.

My advice as your kiddos start their journey in kindergarten: ask a lot of questions! Let your presence be known. It's only the second week of school, but the teachers and Administrators already know me - and as such they reach out to me, provide updates, and make sure that we have all that we need. Build that relationship with the school from the very beginning, it will make it that much easier to advocate for your child in IEP meetings or other educational settings if you already have a relationship with them and your family is known to the school.

It's still very early in our Kindergarten journey, but we are all excited about the great things that we know GOD has in store for Becca this year! She has grown leaps and bounds since her initial diagnosis, and we know that she will only continue to grow until she becomes the person that GOD has called her to be. And I am honored to be even a small part of her grand story.