A Day In Our Shoes

Don't IEP Alone | IEP Advice for Parents | Special Education Advocacy

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There are only a few thousand people in the country who know as much about IEPs as I do. Make sure you're following and subscribing so that you don't have to IEP alone. #DontIEPalone

Lisa

About Lisa

Hi, I'm Lisa, owner and main writer for this site. I live in Chester County, PA with my husband and two boys. I am a Special Education Advocate and Disabilities Consultant, run this blog and the Facebook group and manage to squeeze in time for lobbying. Thanks for reading!

What to do when your desired (out-of-district) IEP placement rejects your child.

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IEP Placement: Private and Out-of-District

Ahhh…you’re finally there. After months (maybe years!) of IEP meetings, you and your school district have agreed that your child needs a private placement. Success! Finally, no more stagnating, no more regression. Your child will finally be in a more appropriate placement.

And then, you get the sucker punch. It knocks the wind out of you. I know this, because it happened to us.

You’re going about your daily business, and one day, a letter arrives from one of the schools that you wanted for private placement:

Dear Mrs. Lightner,

We are are in receipt of your son’s educational records and blah blah blah, blah blah blah……..REJECTED.

Wait, what?

Private Placement Rejection

Not only was my son REJECTED from several private placements, none of them was my first choice. He was rejected by his safety schools! I had sites that I was positive would take him, that I was keeping just in case our first choice rejected him. His safety schools….REJECTED!

It’s actually pretty common. Having a private school or APS or non-public school (they are called different things in different states) reject your child. So what can you do?

What to do when IEP private placement rejects your child

First thing is, take a deep breath. Remember, it took months to get to this spot, so this little crisis is not going to be fixed today. As I said, this has happened to us, so I totally get it. I understand the anxiety and worry that goes along with this, but stay calm and stay focused.

To add, my son was rejected for placements in July. Quite literally, we had no placement for him just about 6 weeks before school started and he was aging out of preschool. So I understand the urgency. I understand wanting to fix it NOW. Anyway, back to what you can do. It will take time, focus and energy to get this done.

Hindsight is always 20/20.

First, were you proactive in this? Did you pre-approve the referral packets that were being sent out? Are you positive of what information was sent out? Do you need to do damage control? My former agency once had a client, and the child’s district included several incident reports with the packet-incident reports that showed the child in full crisis mode, at his worst. If the private placement you want received a few snapshots of your child at their worst, you may need to explain that to them.

This is what you need to determine, so you can decide how to proceed.

Move forward.

Re-read or read for the first time, what was sent out. Is it an accurate picture of your child? If not, you might need to request more evaluations. You might need the IEP Present Levels section revised. The kid in front of you needs to match the kid on paper, because paper might be all that the private school saw.

Did you visit the school? Did you see your child fitting in there? Sit down and define it. What did you see on your tour, and how did you think it addresses what your child needs? Re-read their website. Is there something you missed? Are there certain diagnoses that they require for admission that your child doesn’t have?

After re-evaluating, is this still the IEP placement you want?

OK, if it is, look at the notice you received. Look at who sent it to you, and call them. Be polite, professional and ask. “I really thought that your school was a good fit for my child because….” and ask if there is any kind of appeals process. Offer to bring the child in for a visit if that has not already happened. Offer to have their personnel visit and observe your child at their current placement. Ask, make offers. Do what you need to do. I have seen students do a 3-day trial at a private school. Plead your case for why your child is a good fit, but also ask them questions on what you can do.

It might be just because they are full. If that’s the reason, ask how long the wait list is. Ask what school/programming they feel is comparable to theirs.

Write letters.

Next, draft an email to your special education director at your district. Remind them first that the team agreed that private placement was appropriate. And then something like, “And you probably received the same notice that I received, that XYZ placement rejected him. I have since learned that this is because….” and tell them what the private school told you. Tell them what they need to know (such as if you told the private placement they could visit your child in school).

Or, that letter might be something like, “Unfortunately, they are full and do not see any openings for 3 school years.” Then, ask them for their recommendations. While I would expect parents to research and visit private placements, the team should be assisting you to the best of their knowledge. I find that teachers often don’t know too much about the private schools, but trust me, your Special Education Director knows all the area private placements and where other students from your district are placed.

You may just have to accept that your first choice of placements is not going to happen. If so, seek a comparable placement, and also take a closer look of what programming they offer (which is likely why you wanted your child there) that could possibly be implemented elsewhere. For example, ABA does not only take place in ABA schools.

Be open minded and ignore rumors.

You have to remain open minded. Are you ignoring a particular placement because of what you have “heard” about it from other parents? Give it a chance, visit. You just might be pleasantly surprised.

Network with parents in your area. Google your little heart out and visit the placements.

In the end, I got K’s current placement to give him a second chance. We visited the school and brought him in, and they visited him at preschool. And it all worked out. By the time school started in September, I might add.

Stay focused and it will work out.

**Adding: If you feel that your child is being discriminated against, please contact a civil rights attorney.

More on FAPE and Dispute Resolution:

{Special Education Due Process} 11 Critical Points to consider before filing.

{Special Education Due Process} 11 Critical Points to consider before filing.

Should you represent yourself in Due Process? 6 Tips from a Hearing Officer.

Should you represent yourself in Due Process? 6 Tips from a Hearing Officer.

{IEP/Special Education Mediation} What Parents Need to Know.

{IEP/Special Education Mediation} What Parents Need to Know.

It's all about FAPE.

It's all about FAPE.

What every parent needs to know about signing away FAPE.

What every parent needs to know about signing away FAPE.

IEE Independent Education Evaluations: When, why and how to request one.

IEE Independent Education Evaluations: When, why and how to request one.

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SUDEP. It’s time to say the word.

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I create products to make the IEP process easier. Take a look!

SUDEP

I was at a seminar at our local children’s hospital, to teach parents about epilepsy. I asked the neurologist, “It seems there is a lot of information about seizures and all that…but I never hear anything about SUDEP and that is what worries me most. Is there any new research on SUDEP? Is there anything we can do to try to prevent it? How come no one ever talks about SUDEP?”

His response (and in a very condescending tone, I might add, and I’m not the only one who heard the tone): “Well, let me ask you this, you learn that your baby has seizures…is the first thing you want to hear that they might die in their sleep?”

Me: “Well, no, it doesn’t have to be the first thing….but it should be discussed.”

And yes, for the record, it has been my experience at 3 different hospitals with more neurologists than I can count….no one EVER brings up SUDEP.

Parents need to know about SUDEP.

He began to talk more. But as he was talking, another mom near me leaned over and asked, “What is SUDEP?”

So I told her. And, it turns out, her son is also at high risk for SUDEP, just like mine.

A few weeks ago, I watched an online webinar about epilepsy. We were invited to submit questions to the neurosurgeon doing the webinar, live and in real time. Near the end, she said, “Well, if there are no more questions….”

I submitted a question. It was about SUDEP. Her assistant handed it to her. She got a funny look on her face for a moment. Then, did not answer it. Moved on to something else.

This has to change.

The message from the medical community is loud and clear…we don’t like talking about SUDEP.

I am NOT a neurologist, nor do I play one on the internet. However, since my son has Lennox-Gastaut and severe sleep apnea, he already is at a much higher risk for SUDEP. Additionally, since he also has Dup15Q, he is at an ever higher risk. Because for some unknown reason, SUDEP seems to affect the dup15q population at higher rates than the general epilepsy population. Because of this, I have read absolutely everything I can on SUDEP, including painfully combing through academic research and deciphering every word and phrase.

sudep

Sleepless Nights for Parents

Which is exactly what made me want to do this post for SUDEP Action Day–the hashtag. I received the materials, and one of the hashtags is #DareToSaySUDEP. If we can’t talk to neurologists about this, who can we talk to?

What is SUDEP?

SUDEP is the sudden, unexpected death of someone with epilepsy, who was otherwise healthy. In SUDEP cases, no other cause of death is found when an autopsy is done. Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from SUDEP. This is the leading cause of death in people with uncontrolled seizures.

Now you’re thinking, “oh right..that’s why no one wants to talk about it.”

No, they don’t. It’s an unpleasant topic.

what is sudep

What happens in a SUDEP death?

The person with epilepsy is often found dead in bed and doesn’t appear to have had a convulsive seizure. About a third of them do show evidence of a seizure close to the time of death. They are often found lying face down. No one is sure about the cause of death in SUDEP. Some researchers think that a seizure causes an irregular heart rhythm. More recent studies have suggested that the person may suffocate from impaired breathing, fluid in the lungs, and being face down on the bedding.

This is why I don’t sleep at night. Do you blame me? But some of the newer research is pointing to consistencies with SIDS and SUDEP. That is, no excessive bedding, trying to get the child to sleep on their back and so on. Mind you, none of this is a guarantee. None.

Can SUDEP be prevented?

Until further answers are available, the best way to prevent SUDEP is to lower your risk by controlling seizures. (this is a polite way of saying no, you cannot prevent it)

For most people living with epilepsy today, the disease can be controlled with available therapies and good seizure-management practices including the support of an epilepsy specialist. And for people with the most severe types of difficult to control epilepsy, there are steps an individual can take to lower one’s risk, including participating in research to find new, more effective therapies.

What you can do about SUDEP.

It means if your child has seizures, you need to be aware of SUDEP.

You should read about it, learn about it, talk to your neurologist.

Consider a video monitor for your child’s bedroom.

Talk to your doctor about what you can do.

Please note: SUDEP Action Day is typically held in October. This post was originally published near a SUDEP Action Day but was recently edited and republished.

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IEP Compensatory Education (Comp Ed): What is it? How do I get it?

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Compensatory Education

If your school district does not give your child the special education services they are supposed to, you may be able to get what is known as compensatory education. AKA Comp Ed, for short.

piggy bank holding a child's compensatory education fund

What is Comp Ed?

Compensatory education or comp-ed, as it is often called, is an educational fund for a child to further their individualized education program (IEP) goals. 

It’s a compensation fund to help the child “catch up” so to speak (though no guarantees are made) when the school district has been found not to be providing FAPE for a sustained amount of time.

For example, for 2+ years, a parent has repeatedly been asking for reading evaluations and specialized reading instruction for her child. The school district repeatedly denies her requests. Mom decides to have the child privately evaluated and it is determined that the child’s reading skills have not progressed in several years. Thus, the child may be awarded a comp ed fund to make up for the time when the school district should have been educating the child, but wasn’t.

Where is Compensatory Education mentioned in IDEA?

It’s not. Sorry! This is something that has come about from case law.

The IDEA “…authorizes the court to ‘grant such relief as the court determines appropriate.’” Bd. of Educ. of Oak Park & River Forest High Sch. Dist. 200 v. Todd A., 79 F.3d 654, 656 (7th Cir. 1996)(quoting 20 U.S.C. Section 1415(3)(2)(now at 20 U.S.C. Section 1415(i)(2)(c)(iii)). The Seventh Circuit has recognized that this provision allows district courts “to order … compensatory education if necessary to cure a violation.” 

How do I get Comp Ed for my child?

More often than not, this is as a result of a Due Process hearing or a settlement agreement that was reached prior to Due Process. In some rare cases, I have seen a modest comp ed fund awarded as part of a 504 complaint. (However, please do not misconstrue this to mean that you should ask for this as part of a 504 complaint, and a way to avoid legal fees.)

If you believe that you have a case for Comp Ed for your child, I recommend that you seek out assistance from a Special Education Family Attorney.

Compensatory Education cases almost always involve IEEs and proving that the child could have made more progress during the given time frame, if only they had been given the appropriate supports and services. It all comes down to a denial of FAPE.

Bottom line is this. You, as the parent, have to initiate an action of some kind. And start the comp ed discussion. It is very unlikely that a school district is ever going to say, “Hey, we f*cked up. Here, have some comp ed for your trouble.”

How is the amount of Compensatory Education calculated?

There are many things that go into calculating the amount that the child is owed via Comp Ed. If it is a Due Process case, then the Hearing Officer will calculate the amount based upon the testimony during the hearing. If this is a legal settlement, then generally the attorney for the parents and the school district hash it out.

Among the considerations:

  • Amount of time/duration that the student was denied FAPE.
  • “reasonably calculated to provide the educational benefits that likely would have accrued from special education services the school district should have supplied in the first place…”
  • “[what services, if any, were required] to place [the child] in the same position [he] would have occupied but for the district’s violations of IDEA.”
  • “[the student’s] specific educational deficits resulting from his loss of FAPE and the specific compensatory measures needed to best correct those deficits”
  • “what services [the student] needs to elevate him to the position he would have occupied absent the school district’s failures”

You can read more case law decisions and hearing office quotes in this report. Know that the author of that report is an attorney for school districts, so it is not without bias.

Having an attorney is important to this. A good special education attorney can help you gather up the data to show how and when your child was denied FAPE.

What can I spend the comp ed on?

The short answer of course, is education. However, it is essential that the family get this defined in the settlement agreement. Especially if you intend to use it for things like transportation to access the services or technology (a laptop or device) to use for school work.

Some of the things that my clients have used their funds for:

  • Technology
  • Internet access at home
  • Transportation to community college and tutoring
  • Vocational Evaluations
  • Therapy
  • Tutoring

Items that are not usually included:

  • College Tuition
  • Vehicles

Problems to Avoid with Comp Ed

Over the years, I have had several clients receive comp ed. However, once their situation got to that point, I had passed them off to an attorney. I have never handled this myself as an advocate.

And, a few stories are from the street, so to speak. I heard them from other advocates. Learn from past mistakes and make sure that your attorney addresses these issues.

  • Time frame/age not long enough: Since most kids with IEPs can stay in school until 21, most comp ed funds expire at that time. However, I have had clients who did not even receive their comp ed funds until age 18 or 19, so age 21 was just not enough time. We got those bumped back to 25.
  • Reimbursement System: Get it clearly defined how the money will be paid out. And, make sure that works for the parent. I had one parent who had to pay for the services first, then get reimbursed 60-90 days later. Problem was, she was a single mom living in poverty, and could not afford to pay for these services, nor did she have a credit card.
  • Distribution System: I highly recommend you contact your local Arc or other agency and see if there is a joint trust of some kind that you can use to access the funds. One family had a particularly tense relationship with the school. Then, their comp ed fund required her to hand deliver invoices into the school office, despite the child then having an out of district placement. In other words, despite getting the situation worked out, she still had to walk into a hostile environment monthly and ask for money.
  • Qualifying Items clearly defined: Brainstorm with your attorney and advocate on every possible expense that you would want covered. You don’t want things excluded after all of this.
  • Attorney Fees: There is one local firm that takes 30% of all comp ed funds from parents. This often is overlooked (by the parent) at the time they are agreeing to use this attorney, as it catches many of them by surprise when it happens. Though they’ve often signed a contract stating this. Be clear of what the legal fees are up front.

Gag Orders

Please know that at least in my area, these situations are always accompanied by a gag order. That is, if you file for Due Process and arrive at a Settlement Agreement, you likely will not be able to talk about it.

This is how school districts keep things under wraps and systemic problems never get fixed. But, I understand, parents have to do what is best for their kids.

More on FAPE and Dispute Resolution:

{Special Education Due Process} 11 Critical Points to consider before filing.

{Special Education Due Process} 11 Critical Points to consider before filing.

Should you represent yourself in Due Process? 6 Tips from a Hearing Officer.

Should you represent yourself in Due Process? 6 Tips from a Hearing Officer.

{IEP/Special Education Mediation} What Parents Need to Know.

{IEP/Special Education Mediation} What Parents Need to Know.

It's all about FAPE.

It's all about FAPE.

What every parent needs to know about signing away FAPE.

What every parent needs to know about signing away FAPE.

IEE Independent Education Evaluations: When, why and how to request one.

IEE Independent Education Evaluations: When, why and how to request one.

organize iep files

15 IEP Goals for Practical Money Skills.

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I create products to make the IEP process easier. Take a look!

Practical Money Skills

Remember when we were little, and we thought nickels were worth more than dimes, just because they were bigger? Ah, those were the days. As part of adulting, we need to teach our kids practical money skills.

Money as a topic usually falls under math. However, for kids with IEPs, it is also an independent living skill. Or set of skills.

3 girls with money and piggy banks learning practical money skills

Debt is a huge problem.

I feel obligated to at least mention some debt statistics. Because I truly believe that Generation X, in which I grew up, were not taught adequate money skills as youth. Then, our coming of age was in the era of pretty much unlimited access to credit cards. Is it any wonder we have the debt problems we do?

  • Two in ten adults say they roll over $2,500 or more a month in credit card debt [Source: NFCC]
  • Average loans per student equal approximately $76,468 (total student loans/total students enrolled in public or private universities in 2018)*
  • The typical American household now carries an average debt of $137,063. The median debt was only $50,971 in 2000.

Change the conversation.

My parents were horrible at teaching money skills. They randomly yelled out abstract concepts at me, like “Save your money!” and “Money doesn’t grow on trees!” But never taught me any specifics.

I also grew up in a household where money was an “adult topic” and I was never included in conversations. Then all of a sudden, I suppose, we’re just supposed to wake up one day and know what to do.

I’m working very hard to change the conversation and climate in my household and we include the boys in conversations. At holidays, when they receive gift cards, it’s a great opportunity to practice some of these skills. Brian also has an allowance to manage.

Now that he’s 10, we’re adding some specifics to his allowance and moving to an envelope system. I also opened up a bank account for him so that he could practice ‘going to the bank’ but I’m starting to wonder if that’s outdated. His generation won’t go to the bank.

Adding Money Skills to your IEP

Like anything else, IEP goals are based on needs. So, if you want a money skills IEP goal, make sure that the skill deficit is noted in IEP Present Levels. And, like everything else, you make note of this in your Parent Concerns letter and push the issue if the team doesn’t add it.

I realize that the IEP Money Goals listed below are not in a measurable format. To do that, just insert the skill into the IEP Goal Formula below.

IEP goal formula for special education

IEP Goals for Practical Money Skills

Honestly, regardless of whether or not your child has a 504 or IEP, I think that these are valuable life goals for any kid. I can only imagine how much further along I’d be if I’d had this!

  1. Identify various currency and its value.
  2. Add and subtract currency when given some.
  3. Make change in various scenarios.
  4. Identify what is a financial necessity in life and what is not.
  5. Compile a budget at all levels, from a $25 gift card they have to spend, to a monthly income allowance.
  6. Know and describe the difference between a credit card, debit card, check card, check and gift card.
  7. Be able to comparison shop for different product categories.
  8. How to pay a bill.
  9. How to write a check and record it in the checkbook.
  10. Online banking as appropriate.
  11. Explain the concept of interest–both earning and paying.
  12. Have/explain safe places to keep money and why.
  13. Explain the relationship between cash, checks and bank accounts.
  14. Show restraint and be able to successfully save money; achieve savings goal.
  15. Identify which support works best for student (calculator, phone, etc).

How to Teach Money Skills to Kids

Most kids will receive instruction at school, usually as a part of a math course. However, this is an area where the parent likely has more opportunities for practice and in different settings.

  1. Books
  2. Videos-look on YouTube or Sesame Street
  3. Pretend Play-store, restaurant
  4. Social Stories
  5. Direct Instruction
  6. Board Games
  7. Fantasy Football teams w/parents
  8. Lemonade stands or other fundraisers
  9. Some banks offer videos and programs for kids.
  10. Practice, Practice, Practice!

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What is + How to Improve Your Child’s Interoception.

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I create products to make the IEP process easier. Take a look!

Interoception

Several years ago, I took my boys up to my Dad’s house. Kevin just walked into the room where we were, stood in the middle and started vomiting. Since he doesn’t vomit often, he was upset by this and started shaking his head. It was like a vomit sprinkler. If that is not a classic case of interoception, I don’t know what is.

Ick. Won’t soon forget it. Despite his age, he lacked the skills to be able to identify his feelings and address them.

a boy describing interoception and what is going on inside his body

If you’re from my generation, we were brought up being taught that there are 5 senses: Sight, Sound, Taste, Touch and Smell. Right?

Well, now many medical and educational professionals teach 8 Senses.

The 3 Additional Senses

  • Proprioception-is the perception or awareness of the position and movement of the body.
  • Vestibular- The vestibular sense responds to a change in your head position or having your feet lifted off of the ground. It also contributes to balance and equilibrium.
  • Interoception-The Sense of knowing what is going on inside the body.

What is Interoception?

Interoception is the sense of knowing what is going on inside your body. This covers all parts of the body. Everything from headaches and dizziness to nausea, sexual feelings and the sense of urgency that comes with having to use the toilet.

A person who struggles with sensory issues on the outside may also have sensory issues on the inside. We all have internal sensors called interoceptors that tell us what is going on inside our body, including hunger and thirst. But for some, either the interoceptors don’t function normally, the message doesn’t get sent or doesn’t get perceived as normal. This may come from autism or another developmental disability, surgery, illness or current medications.

infographic about interoception and different parts of the body

When you lack Interoception Skills

I’ve heard several stories of autistic boys breaking a bone and not even crying. In fact, some (now feeling very guilty) moms said they didn’t know, and in some cases didn’t take the child to a doctor for several days. It happens!

You can see how not being able to feel and define a feeling could lead to much worse. Kids can get dehydrated, get frostbite or sunburn or have something going on internally that needs to be treated such as appendicitis.

Having interoception processing skills is also essential for toilet training. Some kids may truly be unaware that they have to go, or not know what that feeling is.

My son lacks interoception and in addition to my constant worrying about illness, I have to wonder about hunger, dehydration (which can increase seizures), how his seizure meds make him feel and if he’s comfortable in his clothing or in his bedding.

If kids lack this skill, but inside they know they are uncomfortable or in pain, they may exhibit some undesirable behaviors.

Define the problem.

When my youngest son was 8, we were having some issues one summer. I’ve been very fortunate that for the most part, my kids do not throw up often. Like, less than twice each, in their entire lifetime. (which I likely just jinxed by typing that out)

Anyway, a few summers ago, all of a sudden, every other day he was like “Mom, I think I’m going to throw up.”

Well, as it went on for a few days, we realized that it wasn’t nausea at all. It was anxiety, and he was having anxiety attacks. However, being only 8 and not familiar with anxiety or nausea, he didn’t know how to label his condition.

He’s not alone. Many adults go to the ER every year thinking they might be having a heart attack, only to learn it’s an anxiety attack. If you’re not familiar with the condition, you can’t name it.

So that’s your first step–deciding if your child has the language skills and the vocabulary to define these feelings.

A lack of interoception skills is not an official medical condition. As in, it is not in the DSM. And, even Sensory Processing Disorder is not in the DSM so you probably cannot get anyone to “diagnose” your child.

However, it is a needed skill set, so it should be documented. Generally OTs work on this as they are often the professionals charged with helping kids with sensory issues. Being able to improve interoception skills can certainly be an IEP goal. (though it would need to be measurable!)

Your child’s pediatrician or OT is the place to start with this.

Interoception- OT Occupational Therapy

According to Wikipedia, there are several facets of enteroception. They are: These include the features of attention, detection, magnitude, discrimination, accuracy, sensibility, and self-report. You can see why our kids may struggle with any or all of these!

Incorrect interpretation of these senses can be too much or too little. They may feel too much. Interoception is also related to emotions, as having emotions results in body functions (such as racing heart, etc.). It also includes sexual feelings. The interoception system is complex and is just recently starting to be addressed by the education and therapeutic world.

Some kids may over-regulate because they don’t know how to manage these feelings. In other words, making a big deal out of nothing. They feel anxious or nervous about something, but cannot respond appropriately.

Other kids may not be able to focus on outward tasks because they are too focused on what is going on internally.

Observation and Knowing your Child

Most moms are incredibly tuned in to their kids. And some of it doesn’t require a special spidey sense to see. Lately, Kevin has started walking into the kitchen and standing near his Rifton chair. Since that is where he sits to eat, it’s not hard to realize that in his own way, he is telling us that he is hungry.

Remember, when it comes to our kids and behaviors, all behavior is telling you something. We just have to figure out what it is. We have also been able to notice that when Kevin gets really super stimmy, he has to go to the bathroom.

My guess is that even as some of you are reading this article, you have lots of memories coming back to you indicating interoception issues. Since parents spend more time with their kids than anyone else, it’s up to us to identify antecedents and patterns. The idea is to look for patterns so that we can help our kids identify these feelings and appropriate responses. And that’s before an emergency.

Dangers of a High Pain Threshold

When Kevin was a baby, still crawling around, I remember this one time he crawled right into this corner thing that sticks out. Within a few minutes, he had this huge purple golf ball on his forehead. Being a new mom, I called the pediatrician. I didn’t know what to look for or if I should run him to the ER.

I remember her saying, “Well, I don’t hear him crying and screaming in the background” and I was like, “Yeah, but you should see this thing, it’s huge!” He didn’t have any of his diagnoses yet, so I’m sure she thought I was just an over-worrying, new, first time mom.

To this day, I’m astounded that he didn’t cry. Since that day, we’ve had several similar incidents. A high pain threshold is related to interoception. It often is the first example that parents are able to label, as pertains to their child’s sensory issues.

How to Improve Interoception

How to Improve Interoception Skills

  1. Verbally Label Everything

    As your child goes throughout his/her day, label everything. “Oh you’re drinking, that means you are thirsty” or “Wow it is really cold out today, we need a coat and a hat.”

  2. Sensory Diet

    A good sensory diet designed and implemented to meet your child’s sensory need will improve all 8 senses.

  3. Use visuals.

    Books, pictures and visual schedules can all help with identifying some feelings such as hunger, thirst and toileting.

  4. Talk about these feelings.

    You may have to change adjectives until you can build up to the correct one. Instead of “Do you feel nauseated?” try using “Does your stomach feel good or bad?”

  5. Use recall.

    “Remember that time you….” and go over how the child felt. Label it and also re-describe the solutions you used.

  6. Ask them to point.

    Can they point to the body part?

  7. Yoga or Mindfulness Activities

    Many adults have found yoga and other mindfulness activities to be helpful in increasing body awareness.

  8. Repetition.

    Moms, you know your kids and what teaching interventions work for them. Like anything else, this just takes practice.

As the two therapists said on the video, this concept has only recently begun to be addressed for our kids. But, as a parent who worried about “high pain threshold” for years, I am grateful to at least have a label for it. And some awareness. You cannot solve a problem if you cannot define the problem.

More Sensory Information for you:

{Sensory Diet} What is it? Should it be on your IEP?

{Sensory Diet} What is it? Should it be on your IEP?

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List of {Sensory-Friendly} Tips for Taking Kids to NYC.

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Things to do in NYC with kids.

I am in love with New York City. And fortunate to live only 100 miles from it. I understand why some find it intimidating. However, turn intimidating into exciting, and make a plan to take the kids. NYC is a wonderful city with so much to do. There’s no place like it in the world.

I didn’t start taking my kids there until my youngest was 5. I think every child should get to visit NYC at least once. And, since we are now seasoned travelers in the city that never sleeps, I’m sharing my tips for going to NYC with your kids. And some extra tips for traveling when your child has disabilities.

boy standing looking at empire state building nyc

Getting there with Amtrak.

When my youngest turned 5, my mother-in-law and I took the two boys on Amtrak to New York City. It was to celebrate my Brian’s birthday. Before and after the trip, I ran into many people who were genuinely surprised that I would attempt this trip with Kevin.

Sure, it took a lot of planning and research. But New York City is surprisingly disability friendly.

More information on the Statue of Liberty Ferry further down this page.

I have taken the train many times to NYC by myself. I chose Amtrak from Wilmington to Penn Station and back. Because, in my opinion it is easy and I am familiar with that trip. A big reason for me is the big push chair that my son uses. It’s about 33″ wide (just over ADA guidelines) and it weighs 30+ pounds. But, it’s his comfort zone and he does not have the endurance to walk all day in NYC. Having his pushchair made his day more comfortable. So that meant I chose not to do some things like ride the subway.  Penn Station is a very walk-able distance to Times Square and that was the main focus of our trip.

Tip: Get a red cap! Our Amtrak experience was wonderful. Ask for a red cap for help and they helped us down to the train with the big bulky stroller. Well worth the tip you give them. I also found the Amtrak phone people to be extremely helpful as I did call and ask some questions prior to booking our tickets. Join Amtrak Rewards so that you get points and so that you get emails notifying you of sales. Our tickets were half off!

My little guy-very excited for his first train ride to NYC!
My little guy-very excited for his first train ride to NYC!

Our train ride itself was very pleasant and the unreserved coach seats have plenty of room, big windows and free wi-fi. It’s almost a 2-hour trip from Wilmington to NYC, with a few short stops. But the time goes by very quickly. My guys didn’t complain at all and had a bit of fun playing with each other.

So fun to watch them interacting and enjoying the train ride.
So fun to watch them interacting and enjoying the train ride.

Driving into NYC

Since this post was first written over 5 years ago, we now drive into NYC when we go. Look online for a parking garage near your destination, and make a plan to go. With gas, tolls and parking, the cost of driving is equivalent to one train ticket. So, it can be a huge money saver if you’re brave enough to try it.

Honestly, I often refer to myself as “hopelessly suburban” and if I can do it, you can too. The mystique of driving in NYC is scarier than actually doing it. Allow time for traffic. Plus, I love having the car in case Kevin has a crisis and we need to leave.

Times Square

Mother Nature really cooperated for our trip. It was 60 and sunny and after a long winter. The streets were packed with people. I found ramps or cut-outs at every street corner. The sidewalks are plenty wide. We struggled with a few doorways. Several times we had to get the boys out of the pushchair, collapse it, then go through. Elevators were easy to find every place we went.

Where to eat with kids in Times Square

There are thousands of restaurants in NYC and you can find whatever you want in the Times Square area. I have been there before and knew that many of the chain restaurants are there. They often add a fun twist to their Times Square locations. I was pretty certain that a Hard Rock or Planet Hollywood would be too loud for Kevin. We chose the Applebee’s on 50th because it was on our walking path (towards Rockefeller Center) and that is where we were at lunch time.

Applebee’s is very predictable and that’s fine for me, with two little ones. The handicapped entrance off of 50th is very wide, with an elevator and a generous lobby area (by NYC standards) upstairs. Applebee’s had no trouble accommodating the push-chair and I knew it was food my kids would eat. The bathrooms were clean and accessible. Had this been an all-adult trip, we probably would have chosen something more unique and adventuresome, but this was fine. My only complaint is that the service was a bit slow. But our food came out very hot, so it wasn’t sitting back there, they must have been busy.

On our most recent trip in 2017, we ate at the Shake Shack on Broadway. Again, very predictable. But affordable and I know my kids will eat it. We also have eaten at the Sbarro’s in Times Square.

Rockefeller Center

I’ve been to Rockefeller Center many times during the holidays to see the tree. My son wanted to go to the Lego Store which is at Rockefeller Center and we had some extra time. From Applebee’s it was about a 10-15 minute walk to Rockefeller Center and the Lego Store. The Lego Store was fun through the eyes of a 5-year-old, but I found it surprisingly small. I was expecting more. They also had a lift thing to accommodate the stroller (much like the one at the Bellevue in Philly, which I really dislike) but I guess it passes ADA.

Looking at a LEGO replica of Rockefeller Center
Looking at a LEGO replica of Rockefeller Center

The store staff were very helpful. We went to the Nintendo Store at Rockefeller Center which my son found hugely disappointing. All they sell is shirts and plush stuff.

Top of the Rock

After that we went to “Top of the Rock” which is an attraction that you can go to the top of Rockefeller Center. As we were heading to the spot to buy tickets, we saw a restaurant that is basically eye level with the ice skating rink. There were also tables and chairs there so that you can go to the nearby food court, get something and eat while watching the ice skaters. I wish I had known about it as we probably would have eaten there.

I purchased our tickets ($70 for 3 tickets, 5 year old was free) and we headed up, up, up 70 floors to the top of Rockefeller Center. Everyone in that area was extremely helpful and our wait times were minimal. We repeated this excursion on our 2017 trip and enjoyed it just as much as the first time.

radio city music hall

Some of the corners were a bit tight, and I’d be worried if the elevator stopped. We were pretty packed in there. But everything went really well. The Rockefeller Center employees were very helpful and cordial to us.

And the view from the top is spectacular…….

One of those images I will treasure forever!
One of those images I will treasure forever!

In high school (20+ years ago) we went to the top of the World Trade Center and I haven’t done anything like this since then. Loved it, and it was fun and scary and dizzying all at the same time! Go do it! Spend the extra $3 for the map they offer you.

top of the rock NYC autism
What a difference a few years make. This time he enjoyed making me nervous!

After that we headed back towards Penn Station and we were going to stop at Macy’s on the way. We tried three separate sets of doors on 34th street and couldn’t find one that fit our stroller. A bummer, but Macy’s was more for me, not my kids. We headed across the street to Crocs and found some fun stuff.

Updated tips from 2017:

Since this post was first written, we have been back more times than we can count. I have taken Kevin with us each time, except at Christmas time.

What are some places to go in NYC with kids?

  1. Chelsea District

    Chelsea Market was fun! For that trip we stayed at a super cool hotel called the High Line. inside chelsea market nyc

  2. Flat Iron Building/District

    There isn’t too much to do in this area. However, if you are in Chelsea or going to Teddy Roosevelt’s house, you can at least plan your walking path to see the infamous building.flat iron building nyc

  3. Ellis Island

    Even taking Kevin with his wheelchair on the ferry was hassle free!kids standing in front of ellis island nyc

  4. Harbor Ferry

    If you want to visit Ellis Island and/or the Statue of Liberty, my advice is to go to NJ and take the ferry. And, plan on that activity using up your entire day. two kids inside the building at ellis island

  5. Statue of Liberty

    Tips: Order your tickets well in advance if you want to climb to the top. We have not been to the new visitors center yet.kids standing at the base of the statue of liberty

  6. Teddy Roosevelt’s House

    A National Park! Right in NYC!two boys in front of roosevelt national park nyc

  7. Upper East Side

    The upper east side of Manhattan is host to the Museum Mile or Museum District or whatever you want to call it. Great for older kids. Look online for discounts, as many admission prices are a bit spendy. You can also do walking tours of sights in the area.the met nyc

  8. Upper West Side

    We go to the Upper West Side monthly for medical visits at Mount Sinai. In our extra time we walk to Central Park and the zoo.

Christmas in NYC with Kids

We saw the Radio City Christmas Spectacular and did a few other things in 2017. I decided to not take Kevin this time and it was a good one. I don’t know if you have ever been to NYC at Christmas time, but the streets are packed. We could barely move at some parts, like 5th Avenue.

Kevin would not have been happy. If you want to do something like the Christmas show or ice skating at Rockefeller Center, you should make reservations months in advance. We got our Radio City tickets in June and were unable to go ice skating.

Additionally, due to safety/terrorism concerns, there are now huge concrete barriers at each intersection. So the sidewalks are packed and then everyone has to funnel in between the barriers to cross streets. It created huge walking traffic jams. I also couldn’t help but notice that at some of the intersections, Kevin’s push chair definitely would not have fit through the barriers. I’m not sure what we would have done. I would research this further before going.

New York City-Sensory Friendly Travel

  • NYC can be noisy. Know your child. At times I wished I had brought our sound-canceling headphones.
  • Use a redcap at the Amtrak stations. Amtrak is a great way to travel.
  • You can probably find some quiet corners to regroup, but have other tools in your toolkit.
  • Plan a reasonable but fun day. Don’t try to overdo it.
  • Food and accessibility were not a problem for us at all. We did not try the subway.
  • Plan ahead, call ahead…and it can be done!
Kevin looking at Manhattan skyline from the Statue of Liberty.

{this post was originally published in 2014, updated recently}

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