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I am having a hard time putting words to the thoughts I am having today. There are so many parts of the story I am about to tell that need addressing, and so much at stake in the message.
I was on the phone the other day with a friend of mine I have had all of my life. He and his wife have a beautiful baby boy, let’s call him Brian. Brian was born with disabilities, specifically, he has WAGR syndrome. It is something that very few people ever need to find out more about, as so few people are born with the specific genetic traits. WAGR contributes such a small part to this story that I am not going to spend my time focusing on that aspect.
Brian is a happy, quickly developing little man, who is making progress every day. He is full of smiles, laughter, and love for those around him, and a true pleasure to be with. All of the things we look for in children of this age, he is doing well at. Eating on his own, learning to get more of his lunch in his mouth than on the walls or floor, getting around from place to place of his own free will, interacting with people, expressing himself, exploring and becoming more independent and just generally being a two year old kid.
There are a couple things that he has been working on developing, that with physical and occupational therapy as well as some support for his visual impairment, he is making great gains, and using his skills across his environments consistently well. He seems to like putting things in his mouth quite a bit, but at this age, everybody’s doing it!! My guess is that it is one more way for him to experience his world, with his vision limited a bit more than most his age.
He is a part of a beautiful family and is surrounded by uncles, aunts, grandmas, grandpas and family friends. He lives in a lovely neighborhood, where he has made friends with other little people his age, and spends his days as any two year old does, at school while mom and dad go to work, and busy at play dates and being a beautifully integral part of his family and community the rest of the time.
Sounds great, right? Well…that is where I need to get on my baby soapbox today.
You see, Brian’s family just had to move him to a new school. Recently they were called into the administrator’s office of their old school, and told without warning of any kind, that they had 30 days to find another placement for Brian. The explanation they gave was that he needed extra teacher attention, and it wasn’t the right school for him to be in. There were no conversations whatsoever leading up to this meeting where any issues were identified as needing to be addressed, and everything that had been communicated up to that point had been that Brian was a pleasure to have in class, and was developing well with very few differences from his peers.
The meeting in the administrator’s office wasn’t one where there was dialogue about what could be done, or trying something new or different. There was no conversation about what the teachers were experiencing from day to day (positive or negative), or what they had been trying to do to support Brian. There was no conversation about building the capacity of the teachers or the school to meet children’s needs…Brian’s or anyone else’s. There were no questions asked of the parents about their son, what they thought, how they felt, or what they would hope for him as next steps. The parents were just told they needed to find something else, and given 30 days to do it. That was it.
This school is one that is considered highly reputable. This family had done their research, and chose this school because it was one of the best institutions of its kind for children in the area. It is a learning environment that has very qualified staff, low teacher to student ratios, is play-based, research-driven, developmentally appropriate, and has all of the accreditations and certificates to show for it. On their website, they state that they “wish that all children could have the Name of the Institution’s experience”. They also proudly state that there is 100% family satisfaction with their program.
My friends called me immediately after leaving the administrator’s office that day, taking me up on an offer I had made when I had met Brian for the first time at their house. I told them as I left that day, if anything ever just feels “wrong” about a situation or an issue they face – to give me a call, and we would talk it through. I never imagined that call such as this would come so soon from them.
At the time that this happened, we talked through all of the options that existed. But, as working parents, they needed to find a solution in the very near future, limiting them in the end, to the only real option being finding a new school for Brian.
He has been at his new school for two months now, and is getting used to the new people, the new environment, and all of the changes. Additionally, his teachers and classmates are getting used to him, getting to know who he is as a learner and a person. The good news is he continues to thrive, continues to progress right alongside his peers, and that the teachers love being with him from day to day. No issues have been raised, and my friends have even been told by the teachers that they can’t believe that anyone would ever find having him in class less than a breeze.
When my friend called the other day to let me know how well things were going, our conversation eventually turned to “what now”. Now that the dust has settled, and Brian is in a good place with welcoming teachers, my friends have turned to being mad about what happened. Who can blame them?
What are the options for making sure the school they were asked to leave doesn’t do this to another family? How does a family let the school know that experience wasn’t at all OK, and shouldn’t have happened? What are the avenues to follow that would create change so this experience isn’t repeated in other schools like this one? Why is something like this still happening in our schools whatsoever and even more of a question is why is it happening at this age level?
This age range is the timing for early intervention, known to be effective in producing positive outcomes for children. Placing a child in a highly qualified place, with highly qualified people to love, care and teach them benefits all children, but even more so, we know from years of research that in particular kids with disabilities thrive and have measurable, lifelong positive outcomes when placed in those types of settings, with those types of teachers. Teachers of people of this age know that – and yet this occurred to this family.
Thankfully, I have the ability through my work and the necessary relationships built that I can ask these questions of people around the state who are in positions of influence, including those at the state department of education level. I can start the dialogue about what we can do, and ask about plans of action. I intend to share this story with them, ask these questions and get them involved with me.
Also, I want to get a conversation started here, hope it creates some momentum, and in the least can bring more awareness to the topic in hopes that parents and educators can have these conversations and figure out how to include children well. Perhaps educators will read this post and consider their actions and the impact they have. Are we supporting young families and young children well? Most schools have the words that describe a wonderful place for the education of children…but do the actions and decisions align with what is written?
This post will be shared with the school that asked my friends to leave. Let’s start a conversation here, in hopes that we can create change that matters.
Lastly, I want to mention something positive that I think has happened due to this scenario for this young family. The silver lining in all of this is that there are two more people fighting for the rights of their son, and advocating generally for people with disabilities and their families. I told them the other day that they are doing an incredible job, and they are great fighters. I welcomed them to the world of advocacy.
What can you do?? PLEASE stand with me, by leaving a comment here. I will bring this to the attention of people at the state level and hope to clearly show that kicking babies out of school in this day and age is a completely unacceptable solution!!
Now…who is with me??
Jennifer Sommerness 
This institute for “learning” is missing a rich and wonderful opportunity for broad based learning: for families, teachers, and most especially for the students. Through interaction with Brian, and witnessing his particular gifts, they could begin to build a foundation of compassion and inclusion, two traits sorely lacking in many adults. What a missed opportunity.
Mary – thank you! You beautifully express what I have been thinking about these days.
This 2 yr old is entitled to a “least restrictive environment” under his IFSP just like ANY other child, with or without a disability! And if his LRE is a typical preschool – even a private preschool/daycare – then they are breaking the law of IDEA by disallowing him to attend. If the child/family has an IFSP (Individualized Family Service Plan, the rights for children w/ disabilities from birth to age 3, and the precursor to an IEP for children over age 3), then the IFSP team (typically county-based, at least here in Northern CA) should include the preschool/daycare staff & the team of parents & professionals should determine appropriate placement & services for the child. In fact, if the county can’t provide a LRE preschool setting for the child, then they may even have to pay for the family to place him in a private, full-inclusive setting w/ typical peers his same age.
No child (baby or school-aged) should be kicked out of a typical school setting based on his disability – that is discrimination plain & simple – unethical AND illegal! – THanks for posting this story Jennifer!
Stacey, thank you! I know you realize how much goes into fighting for the rights of people with disabilities, as well as all of the legal ins and outs. I shared these very points with the family at the time they were making the decision of what to do. The reality, as you know, is that very often families are put into a fight or flight position. In this case, even though they were aware of their rights, in the end, they wondered if they would want their son someplace where people “don’t want him” anyway. That is the second prong of what I think we need to address going forward. Not only is it extremely essential for parents to be made aware of their rights (and attention given to who and how that awareness is established), but also a desperate need for conversations to happen until we can have schools where inclusive practices are expected for everyone, by everyone. The advocates need to be not only the families going through this – we need to do this together.
It is so unfortunate that this continues to happen, but the truth is that it is happening all over the country! I truly believe that we are missing the boat on a verty critical level, that is teaching parents, educators, community professionals and medical professionals together! This is about collaborating together as a cohesive team, not one party dictating over the others “what is going to happen in a child’s education”. It’s about open communication and working through the problem not just dismissing the child from a free and appropriate education alongside their peers! As an educational professional and a parent of four beautiful children of all abilities I will stand with you and am actually working on a few projects to help with this exact concern. As a parent I hold monthly (30 min. long) data mtgs. with my son’s teacher and other supporting staff when applicable to discuss what is working and what is not. This allows us an opportunity to touch base face to face and support each other. In my opinion, parents are the first and forever teachers and as leaders we need to support our children’s educational team just as much as the educational team needs to not only support our children but the families attached to them.
Rachel, I love that you are holding monthly meetings and proactively addressing many things…together!! Yes, yes and yes!! Keep up all of the great work – and thank you for your thoughts!
Wow. Jenny, Here is a blast from the past! Hello from sunny Illinois (No, I really mean “sunny”!) I am surprised to be on your facebook list, but not at all surprised to find that you are still such a strong advocate for children and for families. Services in Early Intervention may differ across states, but if there is a plan (IFSP) and an agreed placement then basically, that school (and district) broke so many laws it boggles the mind. I totally understand a family looking to their child’s needs first, but if this school is not called to account in any way, an opportunity will be lost that might benefit many others…. I have heard of a school changing placement without a meeting, but not even finding the proper next placement or any placement is amazing! It is a little discouraging to find that rights are being trampled just as they were 20 years ago!! But encouraging to find that there is still a lot of energy for supporting what schools should be doing for children and families. Keep up the good work!
Take Care
Ruth Henning
Hello Ruth! So happy to “see” you here! I miss your sage advice and us working together. Yes, I am still very involved in the fight for kids, families, and working towards schools that support learning for all kids AND teachers! You, my friend, have been a wonderful part of that foundation. Hope you are well!
While I wholeheartedly endorse the message in the post and subsequent responses, for the sake of understanding all positions I have to play devil’s advocate and point out the absence in your post of one crucial bit of information – whether the preschool which requested that Brian be accommodated elsewhere was a private school or partnered with the public school system. Private schools, including private preschools/daycares, are not subject to the same requirements for “least restrictive environment” and provision of FAPE that public and many charter schools are. Because they do not receive federal/state funds for providing services necessary for those with special needs, they are at liberty to “pick and choose” whom they wish to accept and/or accommodate, as unfortunate as that may be. Although you indicate in your post that Brian’s parents were aware of their rights, if they unilaterally placed Brian in a private setting before going through the placement hoops necessary, then, unfortunately, the school was legally within their rights to make the decision to no longer accommodate, regardless of whether it seems fair or not.
Brian’s parents are right now in the perfect spot to educate themselves regarding their role in the education process to prevent some common pitfalls from occurring down the road. Parents need to understand that, in order to drive the process appropriately, they have the responsibility of educating themselves on their and their child’s rights when accessing public education and being informed and judicious consumers of special education services. They cannot simply assume the public school staff will automatically provide appropriate services and interventions, or follow the law simply because it is the law. They are governed by fiscal constraints and a balancing act of conflicting interests where the parents are not. The earlier parents understand their ACTIVE role in the educational process and act accordingly, the better the outcome is for the child’s educational journey overall.
My personal opinion, after years of dealing with ADA compliance in the employment environment, advocating for both my own children and now others in the educational environment, and fighting to establish collaborative models similar to what Rachel mentioned, is that anyone in the business of education, public or private, should be in the inclusion business and ALL children should have individualized plans based on their personal learning styles and needs so they are able to fully utilize their strengths as they move toward becoming successful adults. And again, it all begins from birth with early intervention.
Marney, Thanks for your comment. I agree that this is a collaborative effort for sure. There are many facets to this – not only this example, but many others. I am happy this post is bringing conversation and awareness to many.
As far as this situation and what you mention about public versus private, I would add that it depends on the state and how early childhood interventions and services are provided as well. The state that this is happening – it was irrelevant whether it was private or public – it is more like Stacey mentioned – where the IFSP should have been the determining factor for conversation and decisions.
That being said, I think we would all agree that there needs to be more awareness and conversations so that parents are aware at a very early age that if something like this happens, there are avenues and people that can help them figure out the next steps.
As a parent I am shocked that they would so callously treat the child and the parents. No conversation, no assistance or understanding: just sweep them all out the door! These are administrators who are not doing their job and need to wake up.
Thank you, Jim. I love that this post is generating thought, emotion, and in the end – no doubt, ACTION! Thanks for being a part of the conversation!