3 Frequent CPSE and CSE questions answered: New York City Parents

It is not secret that growing up is hard to do. Try seeing your kids grow up: It is extremely hard. Now add special needs to the mix, and you get a very, very difficult situation in your hands! Why does this happen?

Change evokes anxiety in everyone. Some people are more equipped to handle this type of anxiety and have developed adequate coping mechanisms. For many of us, any change in our routine can be very stressful, and a child growing up (in some cases too fast!), can be a source of insurmountable stress.

Let’s just say that the educational system as it is does not make it any better. In New York City, children move from kindergarten to first grade, from fifth grade to middle school, and from middle school to high school in a blink of an eye! Parents can’t keep up with all these graduations, moving-on ceremonies, and yes, applications.

For families of children with special needs, transitions are especially stressful as they need to attend evaluations and meetings during these times. In New York City, parents can easily get confused with these procedures.

As a special educator, special family member, and advocate for people with special needs, I often have to answer questions from parents who are worried about what happens when their children get older. Let’s review three of their most common questions and explore possible answers:

1) What happens when my child turns 3 and no longer receives early intervention services? With parents’ consent, children receive an evaluation that will get them ready to start a program at that time. If your child qualifies, she/he will be eligible to get an extension of the services he already receives until she/he starts the program!

2) What happens when my child turns 5 and can no longer attend his/her preschool program? With parents’ consent, children receive a new evaluation, and a new program (for kindergarten) will be determined. Technically, most schools should be able to serve most students with special needs. However, if this is not the case, a different program will be selected. This can be a difficult process and parents do well in pursuing the help of a professional at this time.

3) Can I still submit and application for Pre-K or Kindergarten, even if my child had an evaluation? The answer is yes! Whether your child will attend one of these programs will depend on what his/her needs are, but you can (and should) make sure that you submit those applications. We never what the future has in store. This will ensure you cover all bases!

Family having dinner.
Dr. Klimek and her special village.

If you have any questions or comments, please drop me a note!

Should I pursue a diagnosis for my young child?

When it comes to getting a firm diagnosis for their children, I often get two types of reactions:  1)  Absolutely yes!  This way, we can get all services as soon as possible, 2) No way!  I don’t want to put a label on my child unless it is absolutely necessary.  What happens when children are younger than 3 years old and this question becomes central?  Let’s explore some possibilities.

  1. What is the right thing to do?  The right answer depends not only on the child but also on the timing.  Typically, for very young children, when the parent is undecisive I advise to wait a little while (somewhere between 3 to 6 months), and make sure that we get solid intervention on the part of the intervening team (special instructors, occupational therapists, speech therapists, physical therapists, etc.) and the parent/s.  Of course, sometimes even waiting as little as 3 months to let intervention produce results seems like a very long time.  This is when it becomes evident that even with the strongest intervention, without the proper intervention, will not suffice.  I have had situations where I clinically know, after meeting the child and working with the child for a short time, that he/she will have difficulty responding to treatment.  In these cases, I suggest we move forward and pursue a diagnosis.
  2. My child was just diagnosed, now what?  Now is the time to look at all the options available to you through that diagnostic lens.  If your child was diagnosed with ASD (Autism Spectrum Disorder), then you may have access to certain school programs and to the specialized expertise of ABA (Applied Behavior Analysis) teachers, who will tailor programs specifically for your child.  If your child was diagnosed with Cerebral Palsy, for example, you may be able to access equipment that may become central to any gross or fine motor work later on in your child’s life.  Whatever the diagnosis is, the specialized treatment will follow.  I like to compare treating children with treating the flu vs. treating a cold.  Even though some of the symptoms look the same, we treat the flu differently from what we would treat a cold.  The flu is much more severe, and it requires a specific intervention!
  3. I’ve decided I want to wait, or not pursue a diagnosis at all, now what?  Remember that the intervening team will still continue with provision of services, as the needs of each particular child is what drives this service provision, not the diagnosis itself.  In many cases, it is not necessary to pursue a diagnosis.  The child’s needs are self-evident and sufficient.  They are enough to carry out an intervention.  In the flip side of the above example, we wouldn’t treat a cold with the same medication that we use for the flu.  It is simply unnecessary and would not work!

Of course, as with anything else that requires careful consideration, it is important to do a lot of learning, consulting, and above all, soul-searching, before embarking on this route.  One thing to keep in mind is that nothing is written in stone, and a decision that you make today, you can take back tomorrow.  (We will have a course on parental rights.  More on this coming soon!). 

This is an important topic and we will continue exploring all the ramifications of each decision.  If you have any questions or comments, please drop me a note!

Sometimes, no diagnosis is needed to design a quality intervention.

Carrying My Mother’s Bags

Personal Stories Series

My brother, Fernando, was born when I was 7 years old. As I remember, my mother suspected that there was something wrong all through her pregnancy, although she couldn’t quite put her finger on it. To her, something just didn’t feel right.

Her fears were partially confirmed when she had to have an emergency C-section at 7 months gestation. And it didn’t stop there. She continued to observe how this child, her third, would not walk when he was expected, or talk when he was supposed to. My parents did all they could to make sure that they visited the every specialist or doctor that they were recommended by well-meaning people.

At that time, and where we lived, there was no early intervention, or good special programs. My parents had to fend for themselves. My father worked as much as he could, as many hours as it was humanly possible, to supply what the family needed.

I remember very clearly when my parents tried to get speech/language services for my brother. It was just a gamble whether the insurance would pay or not. Most times, my parents ended up paying out of pocket, and barely able to cover one or two sessions a week.

There is a clear picture in my head of my mother, holding my brother, who was a big 2 year old boy at the time, while we were travelling by bus to make it to the therapy center. No one would give up their seat. I guess, in their minds, they could not figure out why a seemingly healthy child would not stand up and hold the bars. What they didn’t know was that my brother had just recently started walking and was quite unsteady on his feet.

I accompanied my mother on many of these trips. It was just impossible for her to carry my brother, who was a quite robust 2 year old, and all the bags she needed for essentials. She tried to schedule appointments when I was available so that I could help. I remember clearly carrying my mother’s bags. And I remember clearly my mother carrying my brother.

To this day, I can clearly see how my mom continues to “carry” my brother, in every aspect of his life. And I, for one, do my best to try to help her with her bags. Love you Mom!

Thank you.

My mom with my brother Fernando in 1979

Dr. Vanessa Lapointe’s latest book: Parenting Right from the Start

It was nothing but refreshing to read Dr. Lapointe’s professional take on attachment and development.  Let’s just say that many of the ideas that she talks about in her new book Parenting Right from the Start are the very same ideas that I have been teaching my families for quite some time.  This is all especially true when dealing with special needs families, and at the same time, harder to crystallize.  It is worth pointing though, and I can firmly say that this will be one of the first books I will be recommending to my families from now on. 

The wholistic, and at the same time, individualized approach that she teaches the families she works with very much approximate the message that I try to instill in the families that I work with, namely:

  1. You got this!
  2. Don’t let fear of judgement by others take over!
  3. Don’t let judgement of yourself take over!
  4. Relax and enjoy the ride!

My knowledge is not only based on years of experience but also on years of working on the connection between Eastern and Western thought.  I can only summarize it with what a parent told me this morning, as we were talking about his daughter’s traumatic past, “worrying and dwelling are like a rocking chair, they give you something to do but you won’t get anywhere with it.”  Those wise words carried me through the day, and they can get you through the worst crises as well as the not-so-terrible ones:  temper tantrums, defiant behavior, resistant behavior, and normal developmental challenges that all parents are exposed to. Did your child have a tantrum?  Did you yell when you shouldn’t have?  Forgive yourself and move one.  Learn from this experience and take a step back next time. 

Parenting Right from the Start focuses on exactly what the title claims:  Parenting way before you decide to have children, but in a non-judgmental, caring way.  It explores common milestones from the parents’ point of view and from the child.  It teaches parents to look at the world through the child’s eyes.  The result is a more confident parent who is in control and understands that it is normal for parents to feel overwhelmed sometimes.  It teaches parents to deal with those feelings of defeat and provides an avenue not only to help the child grow, but to help parents grow.

To get a copy of this book, click here.  The paperback is out on October 8th, 2019. 

Highly Recommended!

If you have any questions of comments, drop me a note!

Cheers!

Dr. Klimek

This post may contain affiliate links.

Recommended Products and Activities

Hello families out there! Welcome to the new section of this blog for Recommended Products and Activities that are useful and relevant for our families!

One of the most frequent questions that I get asked, and very often, is what kinds of products I recommend to optimize children’s learning.  Of course, I have an arsenal of answers, depending on the child’s needs and the family’s need. 

I will be dedicating this section of the blog to those products that I find most helpful, and will be talking about tips and strategies related to those products.  And why not, I will also talk about products that I have found useful for PARENTS!  Yes, you busy parents out there!  We will talk about the latest or the most relevant movie, book, and even vacation.  We will talk about activities that you can do by yourselves, to celebrate the incredible families that you are, and activities that you can do as a special family, paying special attention to places that are accessible to our children.

Please check out this section.  Updates will be posted shortly!

Notebook, pencils, watercolor, and scissor
Tips on what to buy and what to do!

The World Through the Special Parent’s Lens: Solid Advice for Well-Meaning Friends and Family

The other day my husband and I were preparing for the upcoming holiday season.  Yes, I know what you are thinking.  The summer isn’t over yet, and we are already talking Holidays?!  Let me explain.  Our combined family is large, and I’m not only talking about our wonderful immediate, blended family.  I’m talking about all of what that implies:  my family of origin, his family of origin, my daughter, his sons, their families, our foster daughter, and their respective families.  In addition to that, we both have the “package” of a previous family.  As you can probably see now, there is a great deal of planning required.

One of the factors that goes into planning for this type of get-together is the fact that my youngest brother, Fernando, who is now 40 years old, is an adult with developmental disabilities.  Why is this a consideration?  My brother is an adult in many ways but cognitively, he behaves and sees the world more like a 2-year-old child would.  He claims spots as his own (for example, the couch in front of the TV), does not want to share (don’t even think about taking his remote control), and can watch TV for hours! (dare not change what he’s watching!).  In addition, he still needs help for certain activities of daily living that most of us take for granted, like going to the bathroom or eating a full meal without spilling anything or staining his shirt. 

This is a huge source of stress for my mother, who in a way, sees herself as the perpetual mother of a toddler who just happens to be really big in size.  This is, of course, a major consideration of when, where and how we plan our events.  Hence, the need to plan for Thanksgiving well in advance, especially when huge family crowds are expected. 

As I thought about Thanksgiving and how to make it comfortable for everyone but especially for my mom, I was reminded of the winding road that brought me to this place of kindness, understanding, and non-judgement.  The road that brought me here was a surprising contrast.  It took me quite some time and some tears of my own to understand, really understand deeply and without judgement, what it means to be the parent of a child with disabilities.  No matter how old that “child” is, he/she will always be a child for those parents.

A group of people are gathered around a table.

This year my mom and brother will be in town for Thanksgiving, as they normally are, and like many years before, we will be flooded with well-intentioned family members and friends, that will want to celebrate Thanksgiving at their home, and I will have to explain, one more time, why this is not a good idea.  I will feel bad saying no, and they will not understand why, even with their kind offer of giving up a couch, a TV, and even a remote control to my brother, I’m still saying no.  The truth is I totally understand their perspective, but I deeply understand my mother’s too.

Here is some advice and wisdom that may help the lay, well-intentioned person, family or friend, understand their special-family loved one:

  1. Special parents feel judged.  If you take away just one piece of advice from this piece, please let it be this one.  Special parents always feel that the world thinks it’s their fault.  Parents typically experience feelings of guilt when things go wrong in their children’s lives, when they see their children suffering.  Somehow, parents think if they could only…(fill in the blank).  And to top it all off, I have heard many well-meaning family members and friends inadvertedly judge those they love by pointing out that things could be better if the parent just did something differently.  So when you feel like your friend or family member is not listening, has put up a wall, or is rejecting your advice, remember that this parent may be receiving the feedback as a judgement.  Be patient and understanding.  Ask the special parent how it feels.  Let them tell you what is like to be in their shoes.
  2. Special parents feel most comfortable in their own environment.  We all in one way or another can’t wait to “get home” at the end of a difficult day.  No matter where home is, it is a symbol of rest, peace, and individuality.  For a special family, the role of this special haven cannot be underestimated.  Their environment may be accessible and may have accommodations that make life easier for the special family.  When they say they prefer to meet at their place, understand that they may not be rejecting your invitation, they are only asking for an accommodation to be able to enjoy themselves a bit more freely.
  3. Special parents feel misunderstood and isolated.  Feeling misunderstood is a consequence of feeling judged.  This is a particularly serious feeling as it may lead to depressive thoughts and the consequence of not only feeling isolated but becoming isolated.  If you have a special parent in your life, pay attention to these feelings. 

In short, my advice for all of you out there, friends of our very special village, is that if you have a family member or friend who is a special parent, please be there to understand, support, and lend a hand.  Should you still say what you think, give advice, and lend your opinion?  Of course!  Your relative/friend really needs you, all of you.  But just be aware of what may be happening behind the scenes, so that you can be more present and more whole to support your friend.

Eight people standing under trees.

If you have any questions, drop me a note!

Dr. Klimek

3 Basic Skills Every Toddler Should Learn

One of the most common questions that parents ask when I start working with their children is “When is my child going to talk?”  Of course, the answer varies.  This concern is one of the most often cited reasons for referrals to the Early Intervention Program and it is understandably a huge concern for families.  It is also quite curious to me that overall, when I first meet children and their families, there is little emphasis placed by teams or other professionals regarding basic skills.  Basic skills are like the building blocks of cognitive development, and toddlers need these in order to be able to grasp everything else, including (but not limited to) the concept of language. Therefore, as a parent or family member, it is important to understand what this entails.

Language is not only a skill, but also a cognitive concept, whereas one person relies on a set of symbols (the language itself) to relay meaning to another person.  You may have observed that when children first learn to speak, they will not speak while another person is talking.  They are grasping the give-and-take of a conversation and understanding the turn-taking that is needed to have a dialogue.

However, this does not happen overnight.  There are certain skills that must be emphasized before children can learn those more complex skills, that include language.  Knowing what skills to work on and emphasize, and how to get toddlers and children to learn them, is a very important first step.

There are 3 skills that I consider essential and I teach every toddler in order to cement an understanding of more complex skills sets.  They are:

  1. Focusing: Focusing is very similar to “paying attention” and refers to a child’s ability to keep attention on the task that he or she has in front of him.  He or she is concentrated and does not want to explore other toys or tasks.  For example, if a child is engaged in putting together a ring stacker, this should be the ONLY activity they are performing. They are not simultaneously building a block tower or completing a puzzle.  Those toys may come next, but for right now, they are only engaged in this one toy.  How do we build on this skill?  Make sure that your child has only a few toys at hand.  Keep toys away if necessary and reduce your child’s need to explore.  Less is more in this case.
  2. Following Directions:  Following directions does not necessarily mean that toddlers should blindly do what they are told.  This is rather a learning tool, a way to get your child to do a simple task, from beginning to end, on request.  It is important that your child be involved in simple, one step tasks such as “close the door,’ “bring your cup,” “throw this in the garbage.”  This is a precursor to language as it reinforces the symbolism of words, and promotes understanding, among other skills.  We already discussed this in part in this prior post.
  3. Completing Tasks:  A task should be performed from beginning to end.  This skill is a reinforcement of the previous two.  Once a child is engaged in a task, it should be carried out to completion.  Otherwise, it is the same as letting your child explore.  Exploring does have a place in learning, but it should be used in moderation and as a precursor to focusing and completing the task at hand.  Promote task completion by re-directing to the task when focusing is lost and by giving your child something he/she likes after a job well done.

Continue practicing these skills and higher, more complex cognitive skills will make their appearance, including talking!

Child laughing.
Learning in a happy environment!

The Special Education Continuum Explained: How to Determine the Best Placement for your Child-Part I

Determining the best placement for a child in special education can be nerve-wrecking, a process loaded with anxiety and uncertainty.  Many questions flood a parent’s mind:  What if I make the wrong decision for my child?  What if my child cannot adjust to a new, more structured environment?  What if the environment is not structured enough?  These and many other questions are very common and likely to worry a parent’s mind before, during, and after the evaluation and IEP period (For more information about IEPs, click here).  The good news is that these are very common concerns, widely shared among parents, and special education professionals and IEP teams across the school systems are ready to answer most questions posed by parents. 

Now, in order to better understand what would better serve the needs of each particular child, it is important to understand and recognize the importance of the special education continuum.  What is this continuum? you may ask.  The continuum simply refers to the ability to determine what is the best placement for your child, based on his or her individual needs.  In a nutshell, it refers to the amount support that may be needed, the amount of structure, the amount of restriction.  What does restriction mean in this case?  The more restrictive the environment, the less contact that the student with special needs will have with his normally developing peers.  For example, a student who only needs what is commonly called a “resource room,” or in other words, a pull-out program where a teacher may reinforce concepts learned in Math or in English Language Arts, has contact with his normally developing peers for the majority of the school day.  A student who attends a self-contained classroom within a regular school may have contact with his normally developing peers during Gym time, lunch time, etc.  However, a student who attends a specialized school may have a very limited contact with his other peers. 

How is a more restrictive environment more suitable for some students?  Some children require an amount of support that can only be achieved when all attention is devoted to them.  They do better when they have more undivided instruction, and when there is no reason to deviate professional attention from them.  In some of these programs, even periods such as lunch are instructional (“instructional mealtime”).  Other students, who do not need this amount of support may do just as well in other, less restrictive environments. 

What does the continuum look like, in terms of services and class size? In general, from less restrictive to more restrictive, it will look like this:

  1. Resource Room, or Special Education Support Services.  A teacher is in charge of specialized instruction for a student or group of students in a particular subject matter.
  2. Integrated Co-Teaching.  A class that consists of students with and without IEPs, co-taught by a regular education teacher and a special education teacher.
  3. Special Class in a regular community school.  A class that is self-contained, typically with 12 students, within the confines of a regular, community school building.
  4. Special Class in a Specialized school.  A class that is self-contained, that may or may not be within a regular, community school building, but is managed by a specialized administration and team.
  5. Non-Public School.  A more structured, private setting, setting.
  6. Home or Hospital Instruction.  For some students who are homebound or hospital-bound, this may be the least restrictive form of instruction.

A knowledge of the special education continuum helps tremendously when identifying how to place your child.  The professionals that form the IEP team ideally would have assess all of these options and should be prepared to discuss a few of these options with you, to help make this determination. 

If you are preparing for an IEP meeting, or have referred your child for an evaluation, chances are that you are thinking of all of these options, or perhaps just a few.  Be prepared to answer questions based on your child’s needs, as they are evident to you, and the knowledge of the continuum, as you see it on this list.

More to come on this topic!

Best Placement leads to Best Outcomes!

“Nothing About Us Without Us”

(Ask US what we want!)

I heard this chant during my city’s Disability Pride Parade and it has been a mantra that has resonated in my ears.  How often do we involve those we influence in life-changing decisions?  I think about this often in the context of my current work.  In fact, I see that this tends to happen quite frequently when the stakeholders are what we would typically associate with disenfranchised groups.

In my current work, I see that the initiative that was put forth by parents in the district was completely diluted and its urgency was minimized by high ranking members of the department that was entrusted with carrying it out.  Likewise, I see that many decisions are made for families, children, adults with disabilities that do not involve those who would be most acutely affected by it.  This has been proven to me, time and time again, by people in decision-making positions, and by special needs families.

What can we do to change this?  This is a huge proposition, no doubt.  However, I always believe that there is strength in numbers.  For starters, it would be a great idea to get involved, participate.  It is easier said than done, I know, especially when many of us hold more than one job to make ends meet.  Find any way to participate possible:  Twitter, email, evening meetings, or any type of social media group that would help you gain perspective.  Second, you can organize, and by this, I mean get together, and reach out to those who need to hear you.  Finally, in the way that it is possible, go out and vote.  Choose candidates that are more likely to hear your concerns.  Remember that your local candidates are the ones who are most likely to influence your local decisions.  Don’t be afraid to ask.

Keep in mind that change takes time, but also remember that we must continue to be heard if we want the powers-that-be to understand how important it is for us to be included in decisions that will ultimately be life-changing for us.  Participation, to the best of our ability, is key.

If you need guidance navigating the turbulent waters of participation, drop me a note.

More to come on this subject.  Stay tuned!

Ask Me First!

Parental Rights Violations

Three years ago, when I joined the Enrollment Division at a local education department in a major metropolitan area in the Northeastern United States, I did it partly motivated by the fact that as a relatively high ranking administrator, I would get to make decisions that would influence the lives of students and parents.  I was particularly interested in improving the lives of students with disabilities and their families.  I wanted to influence the decision-making process so that it would be a fair system, equitable, and barrier-removing for all families.

Little did I know that no matter how hard I tried to remove barriers to access, the “system” would see me and my efforts as nothing more than another obstacle.  For starters, in is well known and well documented that our system has been plagued by laws and policies that have historically favored those on top.  For example, in our city, there is a policy that has been in practice in the past few years.  The policy is aptly named “the reform” and even though it claims to uphold the values of inclusion as its advocates claim that “all students must be served in the same schools as their general education peers,” it truly and many times, violates the principle of the Free and Appropriate Public Education for students with disabilities.

In the past few years I have realized that this policy mostly benefits upper-middle class, white students, as they are typically the ones who favored from this loophole between what Federal Law (IDEA) provides as a right to students with disability, and a policy enacted by a local education department.  The local policy seeks to enforce flexible programming for students that were determined to be best serviced in a particular program, typically a self-contained, small, and structured class for students with special needs.  Flexible programming allows schools to place students in large classes, as long as they work to try to meet the minimal requirements on the IEP.  Psychologists working under these conditions, have been advised to recommend programs that would not require schools to service student in small programs for the entire school day, therefore providing the necessary loophole to make flexible programming possible.

In my view, this is a clear violation of parental rights and student’s right to a Free Appropriate Public Education in the Least Restrictive Environment, a set of rules set forth as provisions to one of the most important educational laws of this land.  Here is the caveat to this loophole:  The typical upper-middle class, well-to-do person, is able to consult a lawyer, sue the local education department for inability to provide services under the provisions of IDEA, and get paid thousands of dollars in taxpayer money to send their child to a private school.  As a matter of fact, in my career as an education administrator, this has been the scenario in almost the entirety of cases that crossed my desk.  The typical student whose parents work multiple jobs to make ends meet, and barely have time to sit at the dinner table and help their child with homework will struggle with whatever decisions schools make for them.  Their children will struggle too.

If you feel that your child has been left behind by a system that does not support him/her, and your family, please drop me a note.  I’m here to help.

More to come on this story…  Stay tuned!

We are all Special in our own way! We are not all the same!