5 Easy Tips to Help Your Child with Special Needs Gain Independence

We often hear questions from parents about how they can help prepare their child for the transition to adult life.  One of the best ways to accomplish this is by offering the most amount of independence as possible with tasks at home and out in the community.  Some of these tasks include:

  • Morning Routine: Give your child the greatest amount of independence, as you safely can. Having them wash, brush their teeth, pick out outfits and dress themselves is a great way to start the day. Having your child prepare a simple breakfast, such as cereal and juice, is another way to build independence.
  • Schedule: Have them pay attention to the clock for bus arrival, etc.
  • Chores: Get them to put away personal items and make their bed, for example.
  • Mealtime Manners: Some ideas are to learn how to use a napkin, cut food, take small bites and say please and thank you.
  • Money and Banking: Consider giving your child an allowance to help with money skills. Another thought is having your child maintain his or her own wallet with an I.D. and some cash. Debit cards can be useful, as your child grows older.

The family is an integral part to helping children to transition to adult life!

ECLC of New Jersey family-eating-at-the-table-619142_1920.jpgChatham School Staff:

Patty Keiling, Speech Language Pathologist; Rita Klimkowski, Classroom Assistant; Patricia Navarra, Classroom Teacher

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Dear Principal Lindorff – I am sure you often hear praise for your staff. The arduous work that goes into helping a disabled child needs patience, love, and a kind person. Since April 2017 when Ethan enrolled in the ECLC Ho-Ho-Kus School, the teachers we have interacted with have been all those characteristics & so much more.

We truly feel blessed and grateful every day that Ethan is at ECLC.

My in-laws decided in August to take everyone to Disney. My knee-jerk reaction was “No, Ethan has autism, we cannot do Disney, the plane, the parks, and all that is involved.” On a good day, I have anxiety about keeping Ethan safe, so the thought of us being in the park during Christmas week with 70,000 other people wasn’t happening. Then, I spoke with School Psychologist James Wagner, and he changed my perspective.

Early fall, he told me a trip was possible, and he encouraged me to talk with other parents who had traveled with a disabled child. He told me to “prepare,” so I had tools and resources in place to help Ethan. At a support group, I learned how to put together a story board, and Psychologist Wagner showed me how to do it for the airport and plane. I also received feedback and guidance from other parents that had success, and some families that did not have success, which proved to be invaluable in planning for the trip.

Behaviorist Matthew Kuzdral also met with me and walked me through the visual story board and provided tips on things I could do to minimize airport problems, such as putting Ethan in a wheelchair, which symbolizes a disability, because a stroller does not. Thankfully, we followed the advice and reserved a wheelchair at both Newark and Orlando airports, which was a necessity in keeping Ethan safe, giving Ethan a sense of security,  mitigating tantrums, and most important, not having to worry about Ethan eloping, which can happen in a second.

Mr. Kevin Carney, Ethan’s head classroom teacher, also gave me advice, which we implemented and utilized, such as the starboard. Ethan happily earned stars toward a reward he wanted, which helped keep him on task and minimize park tantrums. Ice cream seemed to be a reward he was willing to work for! The ESY program Mr.Carney had in summer where the children pretended to take a trip in an airplane helped because Ethan had been exposed to travel for a whole week. I was able to take out some of the papers and projects he did in summer and use those to help Ethan with his fear of an airplane.

We spent months preparing from the guidance we received, and on Sunday, December 24, when the plane took off my husband and I felt a sigh of relief that “Ethan did it.” But it wasn’t just Ethan, it was your staff that provided the advice and tools we needed, so Ethan was able to successfully go through an airport routine, and get on an airplane.  Mrs. Brandy Springer, ECLC’s occupational therapist, also had coached me on some of the tools I could utilize to minimize sound and Ethan being enrolled in her Listening Program the past three months has helped with his auditory challenges, coordination, sensory stimms and even his communication.

At the advice of your team, we had the noise canceling headphones, which Ethan needed not just on the plane but in Disney parks and on some rides. We booked a disability stroller all week, had visual aids and storyboards, booked the wheelchairs, called the airline and Disney at the advice of your staff and prepared everything we needed to keep Ethan safe that week in the parks, pool, and at the hotel. From a bolt being installed on our room door, so Ethan couldn’t elope out, to getting the Disability Access Services (DAS) pass at Disney, it all made for a wonderful first vacation, that almost wasn’t.

Your staff is consistently supportive, but the best gift they gave us was confidence. Confidence that we could take a vacation as a family, despite our son having autism. Mr. Carney is always encouraging me to give Ethan more bandwidth and not let the autism hinder or paralyze us. He has made us see that Ethan is capable of so much, with the right tools. We had a week of “normal” because we were prepared, even for tantrums. Did Ethan have challenges related to his autism disability? Of course. One significant problem was noise, and a different routine. The storyboards of what was next were so helpful. I was prepared to handle those challenges because your staff had guided and coached us!

One thing we crave and rarely have is “normal.” We have adapted over time to our new normal, but some days when autism is flashing in neon lights and taking over Ethan’s brain, we crave normal. I am so proud of how hard Ethan worked through many challenges, and we saw the results of the school’s work all week in Disney. I love using Mr. Carney’s question when Ethan’s go-to behavior is negative, “Ethan what is a better choice?”  It works, getting Ethan to stop and think and coaching him on better behavior options.

I hope the attached photos will remind your educators that their work, their guidance to families, their care, makes all the difference. Thanks to them, we had a memorable  vacation as a family with Ethan’s grandparents, aunt, cousins, and a week of normal in one of the happiest places on earth … Disney World!

With such gratitude,

Dana Berkowitz

 

Tips to Prepare for Your Next I.E.P. Meeting

You just got notice that your child’s Annual Review I.E.P. (Individualized Education Program) meeting is coming up.  No need to worry! Feeling prepared for an I.E.P. meeting can make the experience easier. These tips will help you better prepare to meet with your child’s school and district case manager for the best possible outcome!

Mother with son

  1. A day or two ahead of the meeting, review the I.E.P. from last year’s meeting.  Familiarize yourself with areas of strength for your child, areas that the school was helping your child work on and related services.
  2. Keep a detailed record of the meeting. Jot down questions or items you want to discuss, and bring your list to the meeting. Take plenty of notes at the meeting. Write down answers or other questions you may have that come up. Keep in mind that some issues may come up in school, which do not appear at home.
  3. What is one skill you have seen your child progress in accomplishing? What is one area you would like to see addressed this coming year? Remember, you are an expert on your child! Share what you see as your child’s interests, strengths and struggles.
  4. Does your child receive Related Services (Speech, Occupational Therapy or Physical Therapy)? Giving positive feedback to your child’s therapist is important. Let them know that you see progress on the goals and objectives from last year.  Helping the therapist target a specific skill for the upcoming school year is a great way to share goals you have for your child with the therapist.  Therapists have many lessons they can work on with your child, but knowing what is important to you can help them have focus on specific areas.
  5. If your child is 14 or older, they will be invited to attend the I.E.P. meeting. Let them know they will attend at least part of the meeting.  They will be asked to sign an attendance sheet.  They will probably be asked questions about what they like about school.  Your child should not feel intimidated about attending his/her I.E.P., everyone at the meeting has your child’s best interests at heart!
  6. Keep a collaborative mindset. Stay positive, and do not be afraid to ask questions, seek clarification and share information about what you think your child needs.  It takes a village!

 

Further Reading:

What to Bring to an I.E.P. Meeting

How to Prepare for I.E.P. Meetings

Cynthia Collins, Learning Disabilities Consultant

Susan Sylvester, Learning Disabilities Consultant

“Do the best you can until you know better.  Then when you know better, do better.” ~Maya Angelo

Ready or Not, the Holidays are Coming !

You may read this with excitement, pleasure, or a need to look at your datebook and gift list! So much to do! So much fun and activity – sometimes too much fun and activity for everyone to comfortably manage. Changes in routine,  food, and family can be overstimulating for any of us, including a child with special needs or sensory issues. And, then there is that wish to have everything come out “just right” – just once! Lets take a breather …

Success is 90% Preparation: What are some ways we can prepare children with special needs for the upcoming holiday season?

Create a Holiday Season Calendar : Talking  about what the holiday plans are, where you will go, who you will see and what the experience will “look like” is important. Having a pictorial reference, such as a weekly calendar with pictures of the activities you will be doing will be a good reference and a way to review schedules and plans. Have some photos of holiday activities that you will be doing, or review photos from last year. You may already have an actual or digital scrapbook from prior holidays and these are a great reference for getting ready for this year.

Talk to Family: Communicate with your family members ahead of time, if they do not know your usual routines or needs. Explain any special needs or supports your child will need (Examples: We always sing a song before dinner. My daughter doesn’t like to be hugged or is afraid of loud movies). If visitors may bring gifts, let them know if there are food allergies or sensitivities, such as a sensitivity to perfume. If you are visiting family or friends, have your child bring a bag of items they find soothing or familiar (stuffed animal, games, toys or books), and help them find a quiet spot, if things get too noisy or busy. Have some familiar music to listen to and some favorite, comfortable clothes to change into.

Maintain Some Routine: it’s important to keep to at least part of your usual routine, as this is soothing and predictable. With all the new activities, schedule some of the usual activities you and your child enjoy together, such as 30 minutes of alone time with you or  watching their special show.

Let Your Child Participate: Have your child help decorate, so they can be part of the changes in their environment. Limit twinkling lights, loud music and decorations that make noise. It’s also helpful to assign a job, such as handing out napkins or taking coats to feel part of party festivities.

Relax!: And, for ALL of us – Let’s remember to take a breath, literally – get some fresh air. Take a walk. Work out by practicing yoga, stretching or meditation. Remember to make time for your own partner and friends. Attend a faith program (if that is an important to you). Read some of your new book or even just take a nap. Let’s be prepared, be flexible, keep our sense of humor, and reach out for a hand to help with holiday events or a hand to hold, if things get stressful.

Have a healthy and fun holiday season this year!

by Dr. Allison Weideman, school psychologist

Winter

Children with Special Needs at Risk for Flu Complications

It’s almost Thanksgiving, which means we’re deep into flu season!  The flu can be a big deal.  Mild influenza illness causes fever, headache, body aches, sore throat and cough, and the flu may keep you out of school or work for 1-2 weeks.

Children with neurological and neurodevelopmental conditions, such as epilepsy, intellectual disabilities, developmental delays, and cerebral palsy, may be more likely to develop pneumonia and Acute Respiratory Distress Syndrome when they are sick with the flu.  They may even need to be hospitalized.

That’s really scary.  Even scarier when the CDC reports that children with neurodevelopment conditions historically have low flu vaccination rates.

The best way to protect your family from influenza is to be immunized — all of you!  Mom, dad, kids, and even Aunt Gladys who babysits on Fridays.  Talk to your child’s pediatrician about the safety of the flu vaccine, and schedule an appointment to be vaccinated.

Easing Anxiety About Flu Shots

So, now what?  You’ve scheduled the appointment for the vaccine but your child HATES shots, or going to the doctor, or anyone in a white coat.  The American Academy of Pediatrics and Family Voices share some tips on reducing anxiety related to medical visits and procedures:

  • Be honest- explain that a medical appointment has been scheduled, but don’t give your child too much of a heads-up if they will worry.
  • If your child has had anxiety over medical treatments in the past, call the office before leaving home to see if the appointment schedule is running on time.
  • Bring a favorite toy, book, or iPad to keep your child distracted in the waiting area or examining room. Plan a small reward to be given when the appointment is over.
  • Anxiety related to medical procedures is often caused by feelings of vulnerability. Give your child some choices to help them feel like they have some control during the exam. If they need to undress and wear a gown, ask if they’d like to keep their socks on.  Let them choose the arm for blood pressure or a shot, or ask if they’d like to have their eyes or their ears checked first.
  • If your child is very worried about receiving a vaccine, ask the doctor or nurse if the shot can be given at the beginning of the exam.
  • Reassure your child that medical caregivers and vaccinations help to keep them safe and healthy!

Additional Resources:

Family Voices

Healthy Children

American Academy of Pediatrics

Written by Anne Fields, RN, CSN, Chatham school nurse

Back-to-School Tips for Special Needs Parents

The beginning of the school year is fraught with challenges for any parent but in particular for those who have a child with special needs. Here are a few tips to help your child start the school year off right:

  • Discuss important information – Help prepare your child in the coming days by discussing key information for the upcoming school year. This should  include his or her bus driver’s name or bus number, the teacher’s name and classroom number, etc. These and other pertinent facts can be reinforced through the use of visual supports such as simple pictures and words.
  • Practice routines – Begin practicing morning and afternoon routines prior to the start of the school year to help ease the transition. A slower, more gradual return to school routines allows more time for your child to adjust and feel comfortable in the changes that come with a new school year.
  • Highlight child’s interests  – Discuss and review your child’s preferred school-related activities to help emphasize the fun aspects of school! Examples can include: coloring pictures in art class, singing their favorite songs in music lessons, and hearing their favorite stories during reading time. Of course, seeing their friends again is probably the biggest motivator!
  • Communicate with teachers – The beginning of the school year is an opportune time to update your child’s teacher on topics such as: how his or her summer went, preferred activities or trips, as well any changes in your child’s preferences (foods, play, or topics). This information is especially helpful if your child is new to the school or starting in a new classroom. (Attending Back to School Night is another great opportunity to meet with your child’s teacher and see the classroom!)IMG_9304

Walkathon Miraculous Success

As a nonprofit, you’re a little bit like the Wizard of Oz. In front of the curtain, you see the wonderful services being delivered to constituents. In back, there’s a swirl of activity and sweat to sustain the mission — something called fundraising.

We felt like the wizard waved a magic wand for us last weekend.We decided to launch a brand new fundraising activity and carefully laid all the groundwork for success. But, at some point, you look up and just hope it all comes together! When it does it feels like a miracle. That’s what happened at our first Walkathon “Stepping Up for Special Needs,” last Sunday. We extended the invitation, hoping for at least 100 people, and maybe netting a few thousand dollars. We realized we had to think small the first year, and grow it over time. Boy, were we wrong!

More than 500 people came out, and we cleared more than $30,000 in donations and sponsorships! It seemed miraculous but it was truly a testament to the strength of our ECLC “family” and the excellent work of our schools and adult services. Check out the video highlights!