Updated: Feb 27
Blog Post for Travis - School
P.T. Barnum once said, “No one ever made a difference by being like everyone else.” Our children make a difference in the life of everyone they meet, and they do this by not being like anyone else. However, many times in our children’s lives, they are asked to be measured based on other people’s standards of how children should progress and develop. Many of our goals as parents are to ensure that our children will thrive in life regardless of their perceived challenges.
When I was invited to write about my son and his educational journey, I wanted to ensure that I highlighted one critical concept: Each child deserves individualized and tailored instruction to meet the child's diverse social, emotional, and academic needs. However, as you probably know, no child learns in the same way or at the same pace, and what works for our family may not make sense for yours. Many children who have Skraban-Deardorff Syndrome (SKDEAS) have similarities. Still, they also have many differences, and personalities that make each of them incredible in their own ways. Our family is from Massachusetts, so our laws, procedures, and regulations may not be the same as other those in other states. But, before discussing our journey in the education system, I should tell you a little about my humorous, warm-hearted, and inspiring little boy, Travis.
Our experience as parents of a special needs child began the moment that Travis was born. As he was my first child, I remember it being such an exciting time, and my pregnancy was completely uneventful. Everything seemed to be going perfectly. However, that quickly changed. Within the first minute of giving birth, we knew something was wrong. We were in complete shock as Travis immediately required resuscitation measures. At that moment, I remember mentally preparing for the worst-case scenario. I readied myself for the inconceivable fact that my child might not survive. At the NICU, I remember looking at my baby knowing that the machines, tubes, and wires were keeping my baby alive while thinking my baby might never come home. I saw families around me face that fear and lose their children, it was horrible. I am a nurse and I felt that the role that I was expecting - to be his mother and enjoy the new-mother glow - changed. The role I took on was a loving, yet very clinical role of how to keep my baby alive. To be honest, although I loved my son, that magical glow and the bonding was hard to find when I was trying to protect myself from the agony of what was to happen if he didn’t make it. To this day, doctors are not clear whether his issues at birth were related to his diagnosis. Still, his initial struggles in life helped us to get our SKDEAS diagnosis.
After his birth, he was moved by ambulance to a hospital NICU where they could better support his delicate medical needs. Despite Travis's health struggles, the nurses and doctors tirelessly performed their essential work, which helped my little man recover and finally come home after a month of monitoring. When they discharged us home, we were sent with plans to follow up with many specialty doctors and appointments for various other services, including Early Intervention (EI).
Travis's educational journey started with Early Intervention (EI) services when he was only 4 weeks old. EI is a federally funded program to help young children, with or without a disability, to be evaluated and treated to prevent developmental delays. Regardless of how well a child is meeting their milestones, I believe an evaluation with Early Intervention is invaluable. If there are any possible questions about a child's development, these services can be crucial at the early stages. The information gleaned from these services is incredibly helpful for a parent to support their child.
From the day Travis had his initial evaluation with EI, he qualified for services because he had a NICU stay. On the other hand, my younger child, Owen, received occupational therapy (OT) for a year due to an evaluation for possible gait abnormality without any formal diagnosis. The comfort and knowledge I received from these services were essential for me, and I assume many new mothers would say the same.
In short, the reassurance about my baby's progress and development that I gained from these at-home services provided so much more relief than just a quick in-office doctor's visit. I felt I was doing all I could and all that needed to be done to help my baby make strides and develop into a happy and healthy child.
With the help of Early Intervention, Travis was able to access several services that assisted with his development, including:
Physical Therapy (PT)
Occupational Therapy (OT)
Access to a Speech and Language Pathologist (SLP)
Feeding and nutrition counseling
A baby massage session
Some of these therapies overlapped in specialties. For example, one physical therapist provided our in-home PT, and another worked with him in the pool. On the whole, we had at least one therapy every day. It was incredible! This all came at no cost and was covered by the state and our insurance. The therapists and specialists became my friends, my cheerleaders, and exceptional providers to Travis.
That said, I never felt like I could not care for him alone. The goal of EI services is to teach the parents how to do the exercises, learn the materials, and so on so that parents can maximize the potential gains of their children. According to federal law, Early Intervention programs last until the child's third birthday. After that, there is a transition to Pre-Kindergarten or Pre-School. Our care coordinator, who was also our primary physical therapist through Early intervention, helped by:
getting in contact with the school
sending over the team's evaluations
compiling any transitional paperwork together
setting up a meeting with the school team in my home
Through all these steps, my coordinator ensured the continuity of care for Travis's schooling was as effortless as possible.
During our first meeting at school, to be honest, I was very intimated. I was leaving my son, who struggles to communicate his needs, in the hands of people I barely knew and expected they would be able to meet all his needs. The thought was terrifying to me. As we approached the meeting, I reminded myself regularly that this was a normal feeling for any mother of a neurotypical child as well as differently-abled children. I also reminded myself that if I didn't like the way things were going, I had other options. There was always something we could change.
I knew I would need to be ready to have an Individualized Education Plan (IEP) meeting. But I had no idea what that meant or how to go about it. All I knew was that every parent attending these meetings talks about how miserable they are for all involved. I was not ready for ”misery,” so I spoke with my care coordinator about it in Early Intervention. Thankfully, she volunteered to be our Educational Advocate with the school. By doing this, she confirmed that Travis could participate in every way he wanted while getting him all the needed services. I knew I wanted Travis to be with the neurotypical kids as much as possible. I wanted him to benefit from seeing everything that he was capable of achieving. Still, I also accepted that he may need some help getting there. With that in mind, we chose to have him enter an inclusion classroom and be given therapies after the school day.
With my super supportive advocate and our plan in mind, I was ready to go nine rounds with the school. I went in, assuming they wouldn't be willing to give me anything, but I was not going to give up. I expected that I would need to act that way, despite my non-confrontational personality. I felt I had to be the aggressive mama bear because this is the reality of what other parents and we face, especially with children of rare or undiagnosed disorders.
When we entered the school building, all that enthusiasm I went in with went poof and just vanished. All I could think about was how weak I felt. I should have known more; I should have done more before I walked through this door; I failed him. It was a horrible feeling.
Despite all my fears and anxiety, I was met with a team who did everything they could to make us feel at ease. We met with a PT, OT, SLP, School Nurse, Special Education Director, Special Education Teacher, and the inclusion classroom teacher. All they wanted from me was to get to know me, walk me through the process, and discuss what we thought Travis needed.
Let me tell you! I sat in front of those people and cried out of fear, anxiety, pressure, and somehow relief; it was a very overwhelming experience. All I wanted was for Travis to get the most out of life in every way possible, and I now knew that this was the team that would help me get him there.
I was ready to fight, and they wanted to pick up the banner and fight next to me, not against me as I initially feared. The team handed me a binder comprised of frequently asked questions, a section to store my IEPs, Progress Reports, names of people to contact, and notes. They explained an algorithm to me that showed how students qualify for special education services and how Travis was qualified based on that algorithm.
Until they thoroughly evaluated Travis, everything offered was generalizations of what could be provided. They were careful and calculated in telling me which services he would receive and how often. At first, I knew they were offering the minimum level of services. They said things reminiscent of, "Why don't we start with PT once a week, and we will see how he progresses? Just to see if he needs more than that." I would reply, "Why don't we start with three times per week and decrease if it seems too much." In the end, it was like a negotiation, but things would become more sensitive for me as we progressed through the meeting.
At one point, I was asked what my educational goals are for Travis, and they asked if the school should focus on "life skills" over other skills. I found myself very offended by this question. Regardless of a diagnosis, even a diagnosis as rare as SKDEAS, how can anyone determine what a 3-year-old child will or won't be capable of learning? How dare they assume Travis will not need to learn anything other than life skills? Deep breaths, I reminded myself.
Then, I calmly explained how we were not prepared to pigeonhole Travis or limit his potential. Just because our children have this diagnosis, it does not mean they will not overcome many of the challenges that come with it. If my son is happy and continues to show progress without significant frustration, I will push him to do everything he can with his life. Once I explained this, I think they understood the type of mother I was and the expectations I had for our whole team.
From this meeting, they determined that our first step would be to have an extended evaluation, which would last about ten weeks. Travis would attend school as he usually would, two days a week for two hours. In our area, this is the average time a pre-k student goes to this school. However, after school, the team would take turns to evaluate how much therapy Travis needed. They also used this to identify how much time Travis could physically participate in treatments without being too tired/frustrated. All this was free to us as a part of the Early Intervention services that supported and connected us to our public school system. Ultimately, Travis ended up with a program where he attended school 6 hours/day for 2 days per week, and 1 day for 3 hours per week to include all of his inclusion classes as well as complete all of the therapy that we needed during his Pre-k schooling. It is important to note that an IEP once developed is not set in stone. Things can be amended and changed per the request of the parent, a parent can refuse to sign any part or an entire IEP until certain arrangements are made. This is all part of the negotiation and efforts to make sure that the IEP is inclusive and tailored to the needs of your child. His first year of Pre-K was the start of 2019, He started on his 3rd birthday. Then Covid-19 hit, and he participated in school at that level for 3 whole months before the world was turned on its head.
When Covid hit, we, fortunately, were still protected with his services due to his IEP. We participated in online learning with his inclusion classroom and continued all his services to the best of everyone’s abilities. I understood that this was not normal, and we needed to work together to prevent regression and protect everyone at the same time, not knowing what this virus would do. The teachers' efforts to ease this process again were unimaginable. They made up packets of schoolwork as they did with the neurotypical kids and dropped off specialized equipment that he used in school to ease his therapies and help him focus, all delivered to my home by the teachers. Eventually, as we began this new routine. Everyone involved made the needs of the special needs children a priority. We thank all the people that were willing to take the risks that they did and make the accommodations that they did to get Travis back into school as soon as they possibly could. They wore their masks and shields, they worked remotely from home while they had the paraprofessionals in the classroom helping him with his work, and they tested for Covid non-stop. They kept a close watch on theirs/his symptoms to make sure that he was able to stay in school as safely as possible. It was truly heroic measures that they were doing to fight for his education. They embraced that all the children in this program needed to have their education and they persevered tirelessly with confused, scared, non-compliant, extra-sensitive children to make sure that they got what they needed. As things started to normalize, the summer programs began. Summer school is offered to all children who participate in special education services, and they continue the same level of services. The inclusion class is not held during the summer, but the teachers still use a lot of measures to make sure that they are getting socialized and continue to enjoy their school experience as much as possible. Attending summer school meant another meeting to discuss the services, how often they were provided, and make sure that we were all on the same page about what was to follow.
Preschool (Pre-K) is not a free or guaranteed program in the United States unless the child has special needs. We are fortunate to have Pre-K through our public school in our area. However, not every town is this lucky. Private preschools are available but are not free, and the cost can be astronomical. Private preschools are also not required to provide therapy services after a child is 3 years old or adhere to IEPs like a public preschool. That said, my younger son, Owen, attends the private Pre-K in our town because he no longer requires EI services, and the team there is lovely.
We chose the private Pre-K for Owen because we felt he would benefit from having a place where he didn't have to share attention with his older brother. Additionally, he didn't have to sit through Travis's therapy treatments because this school offered longer hours than our public Pre-K. I am lucky that both kids love their schools and get up every morning excited to go.
I covered the “how” and the “why” of the reasons we chose the schools the way we did, and now I will explain a little more about the evaluation and IEP process. Again, as I explain these things, I think it is important to understand that I am a nurse in a senior care facility and a mother. I have no background in how the education system works, so I may explain things differently than how it works where you live.
An Individualized Educational Plan (IEP) is a legally binding document developed by a team of educators, parents, and other professionals. This document is created for children with learning needs that may require an alternative learning plan due to medical, developmental, or intellectual disabilities or diagnoses.
Additionally, a document called a 504 plan helps children who require adjustments in their educational format due to medical reasons. As such, they may not require special education services. For example, a 504 would support a child who may require a change in the learning plan due to asthma, diabetes, or being differently abled. In short, if a child's diagnosis doesn't impact the educational needs, they would have the 504 plan. On the other hand, an IEP includes medical and educational needs, which is why we have an IEP plan for Travis.
As I explained earlier, we had an initial meeting with the school, first in our home and then at the school. They gave us paperwork to fill out about Travis's history. They also gave us the binder to make sure we could see where vital information was to be kept and what would be needed moving forward. They also gave us a Parents' Rights Packet, which, by law, must be provided and/or offered at every IEP meeting. Parents' rights include the right to:
receive their Procedural Safeguards Notice annually and upon request
participate in IEP meetings
invite additional people to the IEP meeting
call for an IEP meeting at any time
consent or decline to consent
receive prior written notice regarding changes
obtain an independent educational evaluation (IEE)
file a due process complaint
keep their child in their current educational placement throughout due process complaint proceedings
With these rights in mind, we moved forward without the IEP process. As I stated earlier, the school initially seemed to require more information about Travis's needs. Therefore, I asked a developmental psychologist at our local children's hospital to evaluate Travis to confirm his physical and educational needs.
At that time, he tested in the 18-month range at 3 years old. Still, evaluators weren't sure if what Travis was experiencing was a communication issue that was limiting his abilities or if it was an actual educational delay. With all these questions still yet to be discovered, they determined he needed to have an extended evaluation upon his entrance into school as well. The process of the extended evaluation took about ten weeks. So, Travis attended school as usual and was evaluated using standardized testing methods to determine his progress. During this time, he continued to receive PT, OT, and SLP services. After the end of this evaluation period, we started to develop his IEP.
During academics, Travis would focus on things such as attending to stories during story time, identifying his name, and identifying colors and shapes. All these tasks were carefully measured to determine if he was making progress. They would examine the number of times Travis attempted a task. Then they would compare it to the number of times he successfully completed it. This measurement formula was used to determine if he progressed in many areas of need.
For PT, they asked him to perform tasks such as:
walking up and down the stairs with an alternating pattern
getting up from a kneeling position without assistance
lying down in a superman position for a set time.
They again tracked how many times the activity was completed and how often he was able to participate in the activity.
In OT, they measured skills such as Travis's ability to:
make an independent rotation of his wrist from his arm
don/doff his jacket
use a zipper or button on a shirt
In Speech therapy, they started by working on identifying objects with a simple word. These words would be made from letter or sound patterns such as consonant/vowel/consonant (CVC) with words like cat or words with the letter/sound pattern consonant/vowel/consonant/vowel (CV/CV) like mama. As the child progresses, the words and tasks get more complicated, but these skills are what we were working towards when Travis started.
We also incorporated the use of a Picture Exchange Communication System (PECS) binder when he started, which they thought would be the most low-tech option. The goal was to see whether Travis could utilize the computerized Augmentative and Alternative Communication (AAC) device in the future. Eventually, the school provided us with an Apple iPad and the software an AAC specialist determined was the most appropriate programming. They also provided us with consults from time to time to ensure that Travis had the best available equipment tailored to him and his needs. And I must emphasize this, all these devices and services were provided at no cost to us by our public school!
They also began to work on his American Sign Language (ASL) skills. When Travis started school, his approximation of signing was his primary form of communication. When he was enrolled, he had about 12-15 words and 150 signs, mainly used for identifying things around our home or at school. When Travis is trying to communicate, we will focus on whatever mode of communication that he is most comfortable and successful with at that moment. We will encourage him to try and be as verbal as possible, but if that doesn't work or he becomes frustrated, we will move on to his other modes of communication.
Through this journey, we have found that Travis loved to be taught in a play-therapy way. The school might call it Discrete Trials Training (DTT), a method used in Applied Behavior Analysis (ABA) therapy. DTT is a style of teaching that is not the standard, "What is this shape? Circle the right answer" style of teaching. Instead, DTT is used to help children develop and master skills using small, easily taught steps. For Travis, it was done in a fun and playful way. For example, Travis gets obsessed with topics such as Frosty the Snowman, Blues Clues, The Greatest Showman, horses, and different Toy Story characters. So, for Travis, they teach him using this strategy such as when teaching the shape of a circle. For example, they might explain to him how Frosty's body is made up of three circles. Then, they will ask him to find the circles. Then, they will repeat this process until he understands that the shape that makes up Frosty's body is a circle. If he gets an answer wrong, they will use positive but constructive phrasing, such as "Let's try again," rather than "No, that's not it." This DDT strategy is another ABA training method that helps prevent frustration and any negative feelings associated with getting an incorrect answer.
Throughout the day, in his classroom, Travis has not only special education and inclusion teachers, but he also has a one-on-one paraprofessional to help facilitate his communication with others. The paraprofessionals allow Travis to be as independent as possible. However, suppose he has tried to communicate his thoughts but is still not getting his point across; in that case, the paraprofessional would help him explain what he is trying to say. The adult will also use whatever communication modality Travis is working on at that time. While communication is a primary focus for the paraprofessional, they also help Travis to manage his behaviors in the classroom. They are also trained in ABA, so those methods are used in every aspect of Travis's day. Additionally, he works with his teacher in ABA therapy for about an hour daily.
In general, every aspect of his day is broken down into different specifics listed in Travis’s IEP. Each week, they will track the type, how many sessions, and the amount of time at each session that Travis has received from each of his therapists. Due to the IEP and how it is a mandated and legally binding document, the school must implement every aspect of it, or I have the right to take legal action—no matter what. Legally, they are obligated to provide the services agreed upon or make arrangements for him to have the services at an out-of-school location, again at no cost to me.
There were many things that I stressed that I wanted on the IEP. I wanted, in writing, a specific number of meetings to follow up on his progress per quarter and as needed. They stated that most children come home with a communication log, and I was finding that it was very inconsistent at times. I wanted to institute a communication log with the school that was specific to what he was doing in school, for example, instead of using words like “echoic” with no explanation I requested that they mention what words they were working on. I find that we can monitor his progress and encourage his learning if he reinforces the same type of learning at home. If they are working on him saying “ball” and throwing a ball, then so are we. It is important to our family that consistency across all caregivers is there, to help with behaviors, and educational needs, and to decrease frustration.
It was brought to our attention that Travis was having some maladaptive behaviors during his school hours. We saw similar behaviors at home, but we thought maybe it was an adjustment from school to home, maybe he was more physical with his brother because it’s his brother and sometimes they act that way. We even hoped the good old standby: they are only like that with their parents because they are comfortable with you. When we found out that he was doing similar things at school, they responded in a couple of different ways. One way was that the behavior was noticed and unacceptable, but the only solution was to remove him from the situation. While I understand the situation, that was not a long-term solution. They also thought that the behaviors were related to his ongoing medical issues. He had been fighting recurrent viruses every week, again I was concerned that the viral illnesses were happening so frequently that he could not continue to have the unsafe behaviors without some other intervention. To determine a more long-term solution we decided to consult a BCBA or a Board-Certified Behavioral Analyst. This person does assessments based on an ABC basis: A: Antecedent behavior, or the surroundings before the behaviors occurred, B: Behavior, what type of behavior is identified, C: Consequence related to that behavior. For example, A: Travis was cutting with scissors during crafts time B: Travis threw scissors C: Crafts were cut short and moved on to another activity. Over time they used this data to determine from four categories what was the most likely cause to bring on behavior and what they could do to prevent this type of behavior in the future. Behaviors are difficult for Travis, and everyone involved. It is clear that he doesn’t want to do disruptive things. However, for some reason, for example, attention seeking, negative or positive reactions give the desired effect of giving him attention. We find that the behavior is less likely to happen if the situation is completely redirected and ignored. The teachers at Travis’s school document much of his behaviors and even things about his medical condition to make sure that we are as up to date as possible about things that are going on in school. For example, they document if they notice staring spells, aggressive behaviors, crying, non-compliant behaviors, periods of frustration, bowel habits, and coughing episodes all so that we can make sure that the information is either addressed or passed on to the doctors for further intervention. Many of these things are reported on his quarterly progress reports to address progress in these areas or not. When Travis was getting sick frequently and we weren’t getting the follow-ups we needed, it was the school who wrote letters stating that they felt his condition was impacting his ability to meet his services and got us the follow-ups sooner.
We also have close communication with the school nurses. Our school is divided into 3 separate sections based on grade level. Each nurse is responsible to cover certain sections and they all help with making sure that they have what they need to ensure safe care for Travis and the other students during the day. They participate in team meetings and the IEP process to make sure that his medical needs are given the same level of attention as his educational ones. Aspects of the IEP at this point include a Seizure and Asthma Action Plan. The nurses have the information on what to do in case of emergency and they have the as-needed medication which they always make sure is up to date in case it is needed. If Travis goes to the office, I am always emailed as to why he was sent to the office and the intervention they took. If he is sick but still able to attend school, I update them frequently about what we have noticed and the things we have done to make sure he was safe to go to school. Last year, he was sick for 8 months straight with recurrent viruses so their help in tracking how he was doing during the day and information to pass along to his providers was incredibly helpful.
We have now begun Travis’s Kindergarten year! He is so excited to take the bus for the first time! The bus he takes is the van that services the special needs children. We put him on the bus at 8:00 in the morning, the teachers take him off and bring him into the school and the reverse at 2:30 pm. He is attending 5 days per week on a regular schedule. He continues to receive his services and continues to attend an inclusion classroom for activities such as breakfast, lunch, crafts, or PE but also has a sub-separate classroom to focus on his academic needs. Breakfast is a new experience that they have implemented throughout the school. He has a very strict non-dairy diet which they also accommodate. It’s amazing that this new program again has been implemented school-wide at no cost to the parents! He continues to have a 1:1 paraprofessional that helps him with all aspects of his day. He comes home every day exhausted but happy and seemingly fulfilled. The other students and his teachers all love him. His outgoing personality and love of attention often make him the favorite of all those around him. We are truly blessed to have had the experience we do.
The school’s services don’t stop at what they can provide for Travis. Last year, a communication board was installed on the playground to help all children with verbal difficulties to make their needs known on the playground, without being hindered by their devices. They threw a party to celebrate the installation and kids from all over the school were interested and shown how to use it to communicate with their friends that have difficulty communicating. They even brought a mascot, played music, and made something that could have been considered new or weird, fun, and exciting! We also have a committee called SEPAC, which helps parents with special needs children communicate with the school if there are difficulties. SEPAC also plans events and implements things around the school to make all kids feel included and have their needs met. Admittedly, I have not been able to participate in the meetings or gotten involved with this committee yet, but I look forward to working with them in the future.
With all the things we are grateful for and all of the things we have experienced, we understand and realize that not everyone has the opportunities we have had in our school. Are things perfect 100% of the time? Absolutely not. We are all learning what is best and working toward that goal together. I appreciate their experience and they appreciate mine. The flexibility and fluidity of our communication has made things work for us. I think that, when it comes to school, all we can ask for is a safe place where our children can be free to learn at the pace they are capable of and to have the people there who want to help facilitate that.
I hope you all have a GREAT school year in any way you choose to go about it! For those out there struggling to get what you need, I am sending Mama Bear Vibes and strength to fight for your baby! Don’t be afraid to reach out to help from your resources and your community. Your community is where your child needs to live, and they will only benefit from knowing them!
If anyone has questions about our experience with the IEP process or what we have implemented into our IEP I am happy to share more information about that. Feel free to reach out!