Preparing Children with IDD for the New School Year

This blog post was written by Dr. Frank Del Rio, Psy.D., LPC, CART

Would you rather listen than read? Check out the “All Things IDD” podcast episode where Dr. Frank Del Rio discusses each of these tips! Click HERE to listen!

 
 

Preparing for a New School Year

A new school year means a new grade, new teachers, new goals, and maybe even a new school! In order to help you and your child with special needs be as successful as you can be, I have some helpful back-to-school tips that I hope will make the transition into a new school year a little easier for you and your child.


Relieve back-to-school jitters
Just talking about the upcoming year and changes can help reduce some of that back-to-school anxiety! Talk to your child about exciting new classes, activities, and events that they can participate in during the new school year. If attending a new school, try to schedule a visit before the first day. With older students, it is sometimes helpful to explain the services and accommodations in their IEP so that they know what to expect when school begins.

Doing a walk-through of the school before the school year starts will reduce a child's anxiety. Locate her classroom and look over the desk arrangement. Find the bathrooms, auditorium, nurse’s office, and gym. If your child travels from class to class, walk her through her schedule.

Organize all of that paperwork
In the world of special education, there are lots of meetings, paperwork, and documentation to keep track of. Try to keep a family calendar of school events, meetings, conferences, etc. Setting up a binder or folder to keep your child's special education documentation, meeting notices, and IEPs in sequential order can also help you stay organized.

Start a communication log
Keeping track of all phone calls, e-mails, notes home, meetings, and conferences is important. Create a "communication log" for yourself in a notebook that is easily accessible. Be sure to note the dates, times, and nature of the communications you have.

Review your child's current IEP
The Individualized Education Program (IEP) is the cornerstone of your child's educational program, so it's important that you have a clear understanding of it. Note when the IEP expires and if your child is up for reevaluation this year. Most importantly, be sure that this IEP still "fits" your child's needs! If you're unsure, contact the school about holding an IEP review meeting.

Usually, Individualized Education Programs (IEPs) are written in the spring. Your child’s new teacher this fall may have no idea which learning goals are priorities for the coming year. Before school starts, read through the IEP to refresh your own memory. Talk over the learning goals with your child, especially those old enough to advocate for themselves. Then make sure each classroom teacher working with your child has a copy and understands the IEP’s intent. An IEP’s strength lies in the parents’ and teachers’ understanding of it and the active participation in implementing it.

Don't assume that anyone from last year has shared anything with this year's group. Instead, be proactive and do it yourself!

Start a School Routine
It's important that a routine will happen once school starts. You can even begin practicing your new schedule, focusing on morning and evening routines, and begin implementing them well in advance of the first day of school.

Attend school events
Take advantage of Open House, Back-to-School Night, and parent-teacher conferences to help you and your child get a feel for the school and meet the teachers, other staff, students, and families. Share the positives about working with your child, and let the teacher know about changes, events, or IEP concerns that should be considered for your child in special education.

Build Relationships
If challenges arise during the school year, it is helpful to know you have others you can turn to. Now is the time to nurture alliances with teachers, support staff, parents, students, and others who impact you and your child. Call or send a thank you note to those who provided “bright spots” during the previous year. Mention how you appreciated their involvement and how you look forward to their future support. Contact others you would like to include among your supporters in the coming year and let them know the important impact they can have in your lives. Be sure to offer your support for their cause in return.

Most importantly, let everyone know that you are available to talk, willing to consider options, and eager to be included in your child's educational experience. Hand out your email address or phone number so you can be easily reached, and ask about the best way to connect with them.

Create a “Positive” Portfolio
All parents should consider creating a “What Works” portfolio. It can be used to create a smooth transition for each new school year. The portfolio should contain positive descriptions of your child. Include a profile describing your child’s strengths, interests, favorite activities, and learning priorities for the year. Include tips about physical assistance or communication with your child if these are needs. Describe behavioral supports that work or ways to structure situations to avoid behavioral challenges. Make a list of tasks, roles, and responsibilities for a teacher’s assistant, if applicable. Also, describe classroom arrangements that help support your child (i.e., seating and positioning needs, noise-level tolerance, climate comfort levels, etc.). Try and include samples of your child’s work and describe any accommodations or modifications that were made to the original assignment to accommodate your child. Share the names of students who are friends with your child and give tips on facilitating connections with other students. Finally, include a photo or brief video showing your child participating with other students and being supported successfully in class.

Request a Meeting
Call your child’s teacher and request a meeting to share insights and information about your child. This is your chance to begin developing a positive relationship with your child’s teacher and to establish yourself as an active team member in your child’s education. This is a great time to review your child’s IEP and portfolio. Most teachers will appreciate your involvement and the knowledge you can share about how your child learns best. Consider this initial meeting as a “marketing” opportunity for your child. End the meeting with plans for ongoing communication with the teacher. Will you make contact daily, weekly, or only “as needed?” Will you communicate using notes, telephone, email, or in person? Establishing this routine reinforces your involvement.

Stay Involved
After laying the groundwork, you can help ensure your child’s success by being involved at school throughout the year. Consider joining the PTA, volunteering in the classroom, helping in the lunchroom or library, or assisting with special events. The more active you are, the more impact you can have on your child’s school, the people who work there, and the education your child is receiving.

Continue Your Own Education
Because you are your child’s most important ally, it is essential that you develop the skills to help your child create a rich and meaningful life. Maybe you would like to learn more about your child’s developmental and educational needs, how to write and implement a good IEP, or how to advocate for your child.

Partners Resource Network (940) 435-1222 offers a variety of resources to assist parents to increase their knowledge and skills. Consider attending a PRN workshop or clinic, or call a PRN Regional Coordinator for free one-on-one advice. They do IEP clinics (learn about the ARD process, review IEPs, determine what you want for your child and how to achieve it, etc.).

Be Sure Agreed-Upon Accommodations Are in Place
You might assume, that everything described in the IEP will be put in place and will be set up for your child when they arrive for their first day of school.

But of course, assumptions can be wrong.

School administrators have hundreds of children to think about, and teachers have many kids to plan for. Only you have the capacity to keep your child's best interests at the top of your list.

Before heading back to school, check in with your child’s team. Double check on critical accommodations, and be sure that any agreed-upon supports are ready to go. If there are issues, it's better to know about them in advance, and there's a good chance that small problems can be addressed before your child steps foot in school.

Establish an Easy, Reliable Communication Checklist
Even after you've given everyone a warm assurance that you're available and easy to work with, there is a good chance you won't hear a peep from anyone at your child's school until report card time (unless there's a serious problem to address). But of course, you want to know how things are going, so you can talk with your child about the day and also so you can address issues before they become a real problem. The easiest way to do this is to provide a quick checklist in a binder that goes back and forth every day. Ask quick yes/no or short-answer questions that the teacher or aide can answer while your child gets ready to go home. For example:

Malik ate his lunch: Yes/No

Johnny earned stickers for good behavior in _________

Sue had trouble with _____________

Collect Information About Extracurricular Options and Events
Your child may have trouble remembering announcements or sharing information about extracurricular activities or special school events. But often these non-academic programs are the best place for your child to explore strengths, meet friends, and start to enjoy the school experience. It may be up to you to get on the right lists, pick up fliers and brochures, check bulletin boards, and make connections on your child's behalf.

If you have concerns about whether or how your child can be included in a particular program, email or call the contact person and ask. There's a good chance that they can accommodate your child's needs.

You may even be able to enroll your child in an appropriate after-school activity that they are open to participating in before the school year begins.

Prep Your Child's New Clothes, Shoes, and Other Items
Many special needs children have a tough time saying goodbye to old items and an equally hard time getting used to new things. Clothes and shoes can create sensory issues, and emotional attachments can be hard to break. As early as possible (at least a few weeks before school starts), begin the process of sorting through older items and buying any necessary clothes and backpacks for the upcoming school year.

Create a "New School Year" Calendar and Schedule for Your Child
Most people are less anxious when they know what to expect; children are no exception. In fact, many special needs children really need schedules to lower anxiety and prepare for transitions. While some schools do provide such schedules to kids, many don't (or do so verbally, which is little help!). Depending on your child's age and ability, you'll need to create a daily schedule to help your child acclimate to the new year and look ahead to events, vacations, etc.

Address Potential Challenges Ahead of Time
If your child is moving from school to school, or from elementary to middle school, they may have a number of new challenges to handle. The more you know about these challenges, the better able you'll be to help them before a problem arises. Here are just a few of the challenges you might want to tackle in summer rather than waiting for the school year to start:

Locks and lockers: Some kids with disabilities have a tough time with typical padlocks. Instead of using the school's typical "turn to the right and left" locks, consider purchasing a lock that uses rolling numbers or buttons. These are usually easier to manipulate. Alternatively, ask the school if your child can use an unlocked cubby rather than a locker (for non-valuable items).

Gym clothes and lockers: Some schools require kids to keep special gym clothes in lockers at school. If this is the case, be sure your child can manage the locks, tie the sneakers, and otherwise manage their gym things. If necessary, consider providing your child with their own lock, velcro sneakers, and pull-on gym shorts.

Computer-based assignments: These days, teachers tend to provide homework assignments, texts, and even grades via computer. They may use school-oriented software or something like Google Drive to communicate with students. Your student may have a hard time knowing exactly how to access a password, get online, and save their work. If your child is old enough for this type of challenge, you'll need to familiarize yourself with the system in order to help them.

Organize School Systems Together
Determine your child's biggest organizational challenges and come up with solutions before classes begin. Visit an office supply store and check out the materials designed for organizing papers, supplies, and time. Choose systems that will be easy enough for your child to manage at school and at home. For example, if you know he loses his homework, buy pocket folders and label them for work to be completed on the left, and finished work on the right. If he can't find books in his locker, buy a locker shelf and encourage him to organize books according to his daily class schedule.

Create a Home Staging Area
Choose an area near the door and equip it with open cubbies/shelving, baskets, and/or hooks. Make this the home for books, homework, backpack, notes, sports bag, keys, lunches, and other school-related articles. Hang a large whiteboard to help her remember tasks and items. An alarm clock or timer will help her get out the door in time.

Find a Tutor or Homework Helper
If you feel that your child might benefit from homework help, find some now. Try out several candidates for personality fit and skill level, and let your child make the final decision.

Review Your Child's Medication
Was your child off medication during the summer? If so, you may want to restart it a week or two before school begins. Ask your doctor and, while you are there, discuss whether medication changes are needed given puberty or increased demands at school.


I hope everyone has a great year of school.

Please contact The Arc if you need any assistance!



Partner’s Resource Network
940-435-1222
www.prntexas.org

Preparing Children with IDD for Summer

This blog post was written by Dr. Frank Del Rio, Psy.D., LPC, CART

As we are getting close to the end of the school year, it is important to remember that this time of year can be dysregulating for some people with IDD. While there are noticeable changes going on with the weather and temperature that many of our individuals may have to deal with, there are also many social changes that will be occurring. Although the transition from school to summer break may be a joyous occasion for many individuals, that is not always the case for everyone we support. Things like a loss of a schedule, a loss of social interaction with peers, the increase in interactions with family, boredom, and the loss of structure that a classroom can bring can all dysregulate those that we care about. Many individuals may also have to deal with the loss of friends as they graduate or change schools, which can be a major blow. Likewise, some individuals may be concerned about where they will go once school is completed. This may be especially true if many of their classmates are talking about moving away to college.

Try to stay ahead of the transition that they are about to make by thinking of what they will be losing when they return home for summer break. Below are some ideas on ways to make this transition easier:

• Create a list of expectations for the summer with the individual. While expectations may be different during the school year, having a clear set of rules and goals for summer is important for maintaining the structure they may need.

• Discuss the summer and create a plan for each week. While some people with IDD might not need a day-to-day schedule, others may, and this is important for reducing anxiety and dysregulation over summer.

• Maintain the morning and evening routines as much as possible. Ensure that wake up time, breakfast time, and bedtime are all similar to the school year.

• If you would like to have a vacation or a trip to see family, make sure that these plans are well

telegraphed with reminders before the trip occurs. Travel may be weeks in the future, but notice should be given immediately!

• If you have an opportunity before summer begins, try and practice through make believe or role playing some of the activities that you will do over summer break that may be new. Pretend to go swimming or practice being at the airport.

• Allow for extra time for all activities, as a new schedule may mean more adjustment time needed.

• Make use of timers and visual schedules for day-to-day activities.

• Social stories may be needed to help better explain new plans for the summer.

• Find a way to increase planned scheduled events for each day and try to make them consistent.

• Summer is a good time to increase the amount of time that one can attend therapy.

• Remember that there may be rough days. Take some time for yourself to de-stress.

• Social stories may also be useful for explaining that some people may not be in their lives over the summer or after summer ends.

• You can create a memory book to help to ensure that names and faces for friends and school staff are easily remembered.

• Create a photo box with each important person from the school year.

• Use social media and virtual meetings to your advantage for long distance friends.

• Plan summer meet ups to encourage contact after school.

• Counseling as needed for the loss of friends if the impact of their loss is extreme.

I hope everyone has a wonderful summer and, as always, your friends at The Arc are available if needed!

To Medicate or Not Medicate, That is the Question

This blog post was written by Dr. Frank Del Rio, Psy.D., LPC, CART

The decision to use medication (or not) to assist individuals with Intellectual and Developmental Disabilities (IDD), especially Autism Spectrum Disorder (ASD) is an extremely difficult one for parents and caregivers. Here, I will attempt to answer some common questions I am asked and factors to consider when determining how to manage an individual’s symptoms as well as some comments from families I have worked with in the past.

I do understand that Autism falls under the IDD umbrella, but for purposes of clarity will list it as “IDD/Autism” in this article.

 

Deciding to Medicate

When a person is diagnosed with IDD/Autism, we are faced with an unbelievably tough choice: Use medication to treat symptoms? Or try alternative routes?

You wonder: What if the medication harms my child’s health? What if it changes her personality? Am I just failing as a caregiver? Naysayers argue that caregivers rush to medicate individuals, but I know this is a decision you agonize over. Learn what considerations convinced other families to use or not to use medication. And take heart: You are not alone. Some approximate quotes from families:

"It's a difficult decision, and it's different for every family. We struggled for years with our decision to medicate our child."

"It is a parent's decision about how to care for her child. People who live with IDD/Autism, or have a loved one with IDD/Autism, know how serious and real this disorder is. The ones who do not have IDD/Autism in their lives cannot fully understand this.”

"I haven't medicated my son yet, but I will probably do so in the next year. If anyone says I rushed to do it, I will tell them that they have not lived with him for the past six years!" 

 

Does He Really NEED Medication for IDD/Autism?

This is the first question caregivers often ask after a diagnosis. The answer is, if the individual’s  symptoms are interfering with social, emotional, or academic life, it might be time to think about medication. Alternative treatments like behavioral therapy can help to control behavior (and should be utilized and considered first), but often when kids struggle, they need more help with focus, self-control, and organization. Medication can help.

Quote: "We had exhausted all 'natural' options first and he was only getting worse. With meds he can actually learn and even excel!" 

 

Are Medications Safe?

Medications are a proven, safe, and effective treatment for IDD/ASD. Years of research and clinical trials show that trying out medication makes sense after a careful diagnosis. The risks of using these medications are small and generally reversible. If side effects do occur, a physician can reduce the dosage, change it, or discontinue use. The trick is careful monitoring and parent-doctor communication.

Quote: "We have changed meds and increased dosage twice. It's a process, continually changing."

 

What About Side Effects?

The most common side effects include appetite, headaches, dizziness, being tired, or trouble falling asleep. Side effects differ depending on the medication. Lowering the dose, changing meal schedule around medication, or switching medication can help.  Your physician can help you address and manage any unpleasant effects.

Quotes: "Do your research, know the side effects, and if it completely changes your child for the worse, then switch meds.”

"There are downsides and side effects and they don't work for everyone. But if they do work for you, or your child, the change can be profound." 

 

How Do We Know Medications Will Work?

Medications have a documented history of being effective. However, medication is not the answer for everyone and there are people who do not tolerate medication well. Talk to your doctor about a trial period. If symptoms don't improve, caregivers can always reassess treatment options with the doctor.

Quotes: "We decided to give it a month on medication. Within a week he was a calmer, more emotionally steady little boy. We didn't look back after that!" 

"We didn't want to medicate, but after a well-designed trial our child's ability to learn and his ability to sequence and function at school and in public improved so much." 

"I did not want to put him on drugs at first, but then I realized that if I didn't like the effect, I could always take him off."  

 

Ditch Medication Shame

Drug therapy for IDD/Autism is not a cause for shame. It doesn’t mean you’re a bad or incompetent parent. It shows that you care about your child, and you want him to have the best chance at success.

Quotes: "One day I sat back and thought to myself, 'Am I not medicating because it's what's best for her or because I will feel like it's a personal failure?'" 

"We realized that our youngest was getting known as the 'troublemaker' and how that impacted her relationships within the family and at school. It felt selfish not to try medication to see if that would help."  

 

Do the Research

Talk with doctors and other parents who have experience with the medications you are considering. Research the medications online (at a reputable site), and read the latest news. Ask questions until you feel comfortable that you understand all of the benefits and risks. Make sure to separate myth from fact, and hold off on a decision until you have all the facts.

Go With Your Gut

Medications can work wonders when they are used at the right frequency and dosage. They can be dangerous if they are used improperly. Don't start a regimen until you are totally comfortable with your decision. And never begin a treatment plan of any kind without a doctor's supervision.

Quotes: "Trust your instincts, you know your child better than anyone." 

"I instantly knew in my gut that without medication my son would lose his self-esteem in school when he couldn't succeed because his brain wasn't working 'right' and other kids didn't like his behavior."

 

Don’t Let Naysayers Dissuade You

Some people will say, “I would never give a medication to my child,” or “Ritalin is kiddie cocaine.” Chalk it up to their lack of knowledge and move on.

Quote: "When I was making this decision, someone asked me, 'Would you withhold medication from your child if she were diabetic?' It really made me think." 

 

Be Patient with Yourself

Every family has different preconceived notions about what medication means. Go slow with your decision-making. Take time to assess how you feel, and select a physician who will work with you to find the best treatment plan – not just the fastest fix.

 

Finally, always remember that your physician is an excellent resource if you have specific questions regarding the use of medication. Additionally, we at The Arc will be glad to assist you if you have any questions regarding medication use, behavior interventions, or any other questions regarding individuals with IDD/Autism.

 


Sensory Strategies for Adults and Children

This blog post was written by Dr. Frank Del Rio, Psy.D., LPC, CART

Sensory hypersensitivity is common in children and adults with IDD (especially autism),  ADHD (Attention Deficit Hyperactivity Disorder), and OCD (Obsessive Compulsive Disorder). Hypersensitivity occurs when any sensory stimuli interfere with environmental stability. Simply put, stimuli (sounds, sights, smells, texture, body awareness, movement, and balance) can cause sensory overload which can result in anxiety, fear, feeling overwhelmed, restlessness, irritability, or anger and may also trigger a fight, flight, or freeze response. The following are suggested strategies that may help both children and adults cope in situations where they experience sensory overload. Just as every person is unique, so are the strategies that work best for you. The strategies under “Anxiety/Feeling Overwhelmed” may also help across a range of sensory triggers. It is important to practice these strategies, plan them out and evaluate them in a calm, safe space. You can check and adapt each strategy to suit your needs.

Anxiety/Feeling Overwhelmed 

Strategy 

  • Check-in - Let someone you trust know that you are feeling overwhelmed

  • Breathing - Breathe in through your nose for (3) counts and out through your mouth for three counts. Young children can hold up five fingers and try to blow them out (like candles on a birthday cake)

  • Counting/Tracing - Count silently to thirty. Trace up and down each finger on one hand six times

  • Positive Self Talk  - Try positive self-talk statements such as – “I am safe, I can cope, this will be over/different soon”

  • Change  - If you can, safely move away from the stimuli to a calm, quiet or safe place, with less sensory input. (i.e from a room to a hallway)

  • Movement - Intense bursts of movement or exercise can increase both adrenalin and serotonin. If the environment allows, try jumping jacks, waving arms around or jogging on the spot. If you are self-conscious about this, looking at your watch can help normalise how this may look to others and help you blend in

  • Hydrate - Hunger and dehydration affect feelings of wellbeing. Taking a drink of water while eating/snacking can be a highly effective strategy to cope with anxiety

  • Safe Space - If you are at school, work, or other social place (i.e. day habilitation program), go to a safe space such as a breakout room, meeting room, first aid room, or library. Try and plan this in advance and notify a trusted teacher, staff member or lecturer. If you are going to a store or other community establishment,, try to predetermine a safe space you might be able to go to if you start feeling anxious (i.e. a corner of the store, a vacant hallway, near a bathroom, etc)

Visual Overstimulation

Strategy

  • Check-in - Let someone you trust know that you are feeling overwhelmed

  • Slow blinking - Blink slowly or close your eyes (for 3 seconds) every 5-20 seconds. This will provide short, sensory breaks if you are in a meeting, performance, or event and is rarely noticeable to others

  • Up close singular focus  - Casually touch your hand to your forehead. This should partially obscure your vision. Focus on the color of your sleeve for 30 seconds, or longer if the situation allows. This provides a change of focus and simplification of focus

  • Visualization - If you can, practice focusing on a section of the environment. Mentally put a picture frame around the scene and attempt to blank out the rest. This does take practice and guided meditation can help

  • Redirection - Redirect your attention to a task, comfort item, or fidget by focusing on it. Do not hesitate to be creative and improvise. Rings, watch faces, buttons, pens, key rings, keys can all be effective. Redirection for 30-60 seconds is enough to provide a sensory break

Auditory Overstimulation

Strategy

  • Check-in - Let someone you trust know that you are feeling overwhelmed

  • Noise-canceling Headphones - Earbuds can help and are often a simple solution that works but may be uncomfortable. Sometimes earmuffs can be helpful. You can also try some over-the-ear headphones. These work great and are relatively inexpensive

  • Ear Plugs - Try various products and see which ones help. Some earplugs made of silicone putty and foam earplugs, originally designed for swimming, may work really well

  • Redirection - Redirect your attention to a task, comfort item, or fidget by focusing on it. This redirection of focus has proven to help block peripheral sound or reduce the impact of environmental noise

Olfactory (Smell) Overstimulation

Strategy

  • Check-in - Let someone you trust know that you are feeling overwhelmed.

  • Hold Your Breath - Practice holding your breath comfortably for 30 seconds. This can be enough to allow you to walk past a restaurant, department store perfume section, or pool which are known sensory trigger sources.

  • Block Your Nose - A mask or scarf can function as a filter and reduce the impact of strong olfactory stimuli. You can use current hygiene etiquette and cover your nose with your inner elbow (which looks as though you are attempting to stop a sneeze).

  • Mouth Breathing - Minimise sensory triggers by slowly breathing in and out using your mouth only. Combining this with using a mask or scarf as a filter can help

  • Limit Exposure - Avoiding triggers is almost impossible. Have the expectation that you will encounter triggers, but that you can limit your exposure to them. Know that it is possible to cope and that the exposure should be over quickly. This will help to minimize a panic response

  • Tolerable Palate Cleanser -  Try different sensory palette cleansers. Items such as coffee beans, lemon rind, vinegar, peppermint, and even your own skin can help to quickly override other strong scents. Consider taking an amount with you if you are going on public transport, to a busy market, shopping center or hospital.