If your child was diagnosed with a disability, especially if this happened within the context of school, chances are that school personnel has approached you and has spoken to you about an “IEP.” In the shock of finding out that your child has a developmental disability, you may not even have had the strength to ask what it is. There are so many things in your mind!
IEP stands for Individualized Educational Plan. It is “individualized” because it belongs to your child and to your child alone. Each specific plan includes details that aim to capture the needs of each child, the level of functioning of each particular child, and delineates what is needed from now on. It is “educational” because this plan pertains to education and not to other areas of life. However, education does lead to other areas, such as vocational or post-secondary goals, and those areas are also covered on the IEP. It is a “plan” because it contains goals, objectives, methods, strategies, and a way to measure whether those goals have been attained. It is supposed to be assessed and revised accordingly over time.
IEPs are also legal documents that show what the student needs and what the student is entitled to. They clearly identify how a student best learns and the recommended settings and accommodations needed. This is very important as the family needs to be aware not only that the IEP exists, but also that this is a document that they have direct input on, access to, and also guarantees the exercise of parental rights, should a child not receive the services delineated on the IEP.
We will continue to talk about the many ramifications of a newly written IEP. In the meantime, please drop me a note if you have any questions.
Your child has just been diagnosed with a disability and you are upset, confused, and angry. You still can’t believe it and you are already getting the “fight or flee” feeling in your stomach. What do you do?
First, take a deep breath. I know, this sounds beyond difficult, impossible, but it is necessary right now. Take a step back, and take a deep breath. You will have time to revise the words later. You will have time to look at reports, and you will have time to consult on them. For right now, you will need to breathe.
Second, take a look at your child. Your child needs you and will be there after the first shock of the news go away. Enjoy being with your child. Enjoy this moment. At the risk of sounding cliché I will tell you that moments are precious and will not come back. Your child will give you moments that will try your patience but will also give you moments of extreme joy. Be with your child, right now.
Last, do something for yourself. You will need to take care of yourself so that you can take care of your child. You will need the energy to be there and to fight. You will need the energy to withdraw whenever necessary. You will need the fortitude to be your child’s voice and your child’s advocate.
Above all, keep in mind that no ride through life is never without bumps. Some rides may be bumpier than others, but it is your very own bumpy ride anyway!
What is Inclusion? The online dictionary Merriam Webster lists the fourth definition of this word as “the act or practice of including students with disabilities in regular school classes.” This is a valid definition and a good start. However, the definition of Inclusion has expanded dramatically in the last few years thanks in part to the activism of families of people with disabilities, and people with disabilities themselves. Under the slogan “nothing about us without us,” people with disabilities and their families have started to create change and expand the meaning of Inclusion to different areas of society.
In New York City, families have organized a march for Disability Pride for the last four years, and one of the main reasons for this march is to bring awareness to the issue of Inclusion. Inclusion ensures that curbs allow for all of us to cross the streets, for traffic lights to announce when it’s time to cross, for signs that include Braille, for menus that include large print, pictures, Braille. This list is by no means exhaustive and continues to grow and we become a more and more inclusive society.
Our responsibility as families is to make sure that we are always on the look-out, that we are agents of change, that we promote Inclusion and inclusive practices and become open-minded to what this means. This may be as simple as letting our child, who has been attending a self-contained class in school, play in the school yard with general education peers and as ground breaking as being a group organizer demanding accessible curbs.
As families, we are uniquely positioned to be agents of change. We are our voices and our children’s voices. Let’s use every possible opportunity to be heard!
As a typical Western society, we are obsessed with perfection. No matter what the situation may be, we always want to win, to achieve. Our social media is constantly being populated with stories of achievement, of reaching goals, of becoming more and more perfect.
Is this realistic? Is this helpful? I’m here to tell you that you, your child, your family does not have to be perfect, does not have to achieve anything in particular to be happy. Often, as parents of children with special needs, we are flooded with anxiety when we see other children, whether typically developing or developmentally challenged, that accomplish goals in ways we can only dream of for our kids.
I remember when I was growing up, way before the age of social media, when classmates would approach me and tell me how their little brother/sister was starting to walk, to speak. I could not share the same accomplishments of my own little brother who was severely developmentally disabled. Anxiety quickly followed and I resorted to embellishing stories so that my classmates would not find out.
It was a different time then, but the concept is the same. No matter what achievements or accolades you may see out there, your child is fine just as he or she is. You child does not have to be the same as everyone else. Your child does not have to be a star. Realizing that perfection is unattainable for every one of us, not only for our children, releases us from psychological bondage and lets us breathe.
We do not have to be perfect because…
No one is perfect!
“If you want real peace in the world, start with the children,” Mahatma Ghandi, one of my most revered teachers explained, while seeking the cause of peace between Hindus and Muslims. He pressed on even harder, as he instructed a grieving Hindu father to find an orphan child, a Muslim orphan child, and raise him as his own, but raise him as a Muslim. Children are entrusted to us in a variety of ways: Some of us are parents, some of us are guardians, some of us are teachers, school principals. Some of us work in a capacity that places us right in the middle of human suffering, and help children day in and day out. Some of us come in contact with children sporadically, but know the importance of each one of those encounters.
It is our responsibility, of all of us, to ensure that children feel safe and feel loved. Whether we deal with children every day or only at times, we need to make sure that children see us as a source of security and unconditional love. These are basic requirements, tenets of the foundation that will support them as adults. This is how we build a world of peace, not only for them but for the rest of us.
In this space, this blog, it is my responsibility to bring everyone together in a loving way. We can share our feelings, our experiences, but we all must agree that our children, in whatever capacity we deal with them, are the route to peace. No matter how difficult the situation, no matter what background, no matter what we bring to the table, our children are precious.
Let’s build a world where peace is the answer.
We were sitting in circle fashion, talking about things that kids talk about. I can’t remember exactly what, but I was fully entertained by the conversation. I was at my uncle’s house, and my younger cousins, and their cousins, were converged in this small circle with me. All of a sudden, one of my cousins’ cousin said “have you seen that other kids over there? He looks like a loquito [a little crazy].” I was shocked by the comment but managed to say “that little kid that you just called ‘loquito’ is actually my youngest brother.” Immediately after that, I got up and I left. I ran. I told my mom. I cried. We both cried.
This happened far away and a long time ago, but the pain of this encounter, and many like this, I still carry today. My experience talking and counseling tells me that families experience this kind of judgment, mocking, isolation. I can still feel the same pain I felt back then and I feel the pain that other families go through, day in and day out.
I ran away that day and ran many other times before and after that, but I no longer do. In the “fight or flee” moments that ensued years after that incident, I decided to fight. It was not longer okay to flee. It is no surprise that I built my life around this fight.
Today, I counsel families of children with disabilities on how to achieve a harmonious life, not the “less than” life that many people think we have, not better than anyone else’s, not the same, but a different life, one that we have been given the honor to live. I get strength from the many experiences that surround my life, from my family, from my youngest brother, who is now an adult, and from taking a moment to breathe every day.
I am here today, writing this piece, so that I can be part of your life, so that we can share our experiences together. Let me listen to the voice in your head. Let me replace the one that is telling you to flee, or to fight in ways that are not good for you or your family.
Let’s navigate the rough seas together.
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