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The Autism Journey: Accepting vs. Resisting A Diagnosis

BY: NICOLE ZAHIRY, M.A., BCBA
BEHAVIOR ANALYST SPECIALIST, AUTISM SPECTRUM THERAPIES

 According to Autism Speaks, in 2021, 1 in 44 children in the United States were diagnosed with autism spectrum disorder (ASD), with boys being four times more likely to receive a diagnosis than girls. A diagnosis, of any kind, means something different from family to family and is often colored by their culture, belief system, generational influences, and socio-economic factors.

For some, a diagnosis provides validation—there is a name for the group of symptoms parents, friends or family members may have observe (or comment on)—things like: a language delay, “quirks” in social skills, atypical behaviors, or excessive tantrums. The diagnosis can be affirming; for moms, in particular, there may be a sense that their “gut” was right. It may be a sigh of relief that their intuition has been validated in the form of a recognizable diagnosis — something more than just an instinct felt deeply in some intangible way. For others, a diagnosis can be a devastating surprise — one that catches unsuspecting parents off-guard and leaves them feeling overwhelmed and underprepared.

Whether a parent has suspected something all along or is taken aback by a diagnosis, all families grapple with making sense of what it all means. The hard part, for many families, is being patient, hopeful, and resolute when the questions far outnumber the answers.

After a Diagnosis

Arguably, one of the hardest parts of the journey for parents of children with ASD, is the beginning. The unknowns are pervasive. The information “out there” is wild. Google is daunting (and often alarmist), and questions lead to more questions even before the diagnosis has been fully digested. Parents may begin asking themselves and others: What is ASD? What does it mean? Will my child learn to communicate? Will his/her behavior ever improve? What now? What do I do? What treatments are available? Why is this happening?

One truth about ASD is that autism is different for each autistic individual. As autistic professor and advocate Dr. Stephen Shore says, “If you’ve seen one person with autism, you’ve seen one person with autism.” And, it’s true. Autism looks, sounds, feels, and behaves differently for each autistic child.

A neighbor, friend, or family member’s autistic child, his/her skills and strengths, areas of need, where and how much he/she is impacted by the diagnosis, will all vary. Every child is unique. Every autistic child is too. Comparing one autistic child against the skills of another can be, at best, misguided and, at worst, detrimental. The best (albeit, the only) way to answer some of those nagging questions is to submit to the journey of autism and start down its road one step at a time, minute to minute, hour by hour, day by day.

The Journey of Autism: Resistance and Grief

There’s no doubt that undertaking something new can feel overwhelming. After all, autism is a journey most parents are ill-prepared to begin and may resist undertaking altogether. Beginning a journey with few answers, little information, and no preparation makes even the boldest and bravest among us uncertain. But, as the old adage goes, “A journey well begun, is half done.” For parents, beginning the autism journey on the right foot often means acknowledging resistance, grief, and other feelings about the diagnosis before heading down the road.

Resistance, in the beginning, often shows-up in unhelpful ways and can breed doubt or distrust and delay access to important early interventions. It often comes from a place of grief, guilt, or anger:  Could the doctor be wrong? Did I cause this? Maybe my child will “outgrow” it? Maybe my child is just “slow”? It can be difficult to side-step resistance and forge ahead when many questions remain unanswered. But, the autism journey is not linear—emotions, feelings, and reactions will not be either.

Later on, resistance can become an important component of advocacy. Resistance may prompt parents to speak-up/stand-up, and communicate to care providers if/when assessment, placement, or goals do not align with their (or their child’s) objectives for treatment. Resistance gives parents a new voice; it can lead to useful insights, self-reflection, and those wonderful “lightbulb” moments that have the power to remove roadblocks and push treatment forward.

Processing grief is sometimes an uncomfortable but important additional step for parents new to the journey. All the unknowns can be heavy; grieving the weight of those worries is important. It is OK to be sad. It is OK to feel loss. It is OK to shoulder that grief with a partner, a trusted friend, a therapist, or a family member. It is also OK if parents don’t feel these things, either.

But for those that do, it is critical to recognize that grief or sadness will eventually make way for other emotions and lend themselves to a steadfast resiliency that treatment, therapy, and advocacy often require.

It’s important to acknowledge that grief can (and often does) exist alongside hope, love, and other complicated feelings—sometimes competing for attention. Accepting a diagnosis is not the absence of grief, but rather, an acceptance of it. It is an acknowledgement that things will look different because of autism but also an understanding that different is not less. Different is important and valuable. Differences are necessary. Differences are an inherent component to being alive, to living, to being human.

The Road to Acceptance and Action

Accepting autism means taking those reluctant first steps.

Those steps can be taken with uncertainty, with fear, with resistance or grief, with hope, with love, with the whole gamut of emotions along for the ride. Acceptance involves understanding autism as more than a label but a gateway to support and community; an opportunity to educate siblings, family, and community members about autism, inclusion, and neurodiversity.

It can be a call to action — personally, within the walls of a home, and beyond. Several important organizations at the forefront of autism and autism research were started by parents. Parents looking for support, digging for answers, researching effective treatment for their children. Parents who didn’t expect autism. Parents who may have grieved the diagnosis. Parents who fought hard for their child, for change, for growth, for acceptance and advancement.

A diagnosis also allows parents to access effective therapies via private insurance and academic supports from their local school district. Therapy that opens doors, strengthens skills, and decreases the impact maladaptive behaviors like aggression or tantrums may have on an autistic child’s quality of life.

Acceptance fuels action. Action brings answers.

Autistic children will have different needs than neurotypical children. There will be different obstacles to overcome and different battles to be fought. But, in many ways, the journey will be the same. Life will ebb and flow and push and pull parents in a thousand different ways—some of which will not be easy to understand. Questions will always come before there are answers. And, there will always be questions that don’t have answers. There will be ups and downs. There will be periods of high highs and low lows.

But, there will be joy. There will be laughter. There will be love.

Nicole Zahiry, M.A., BCBA, is a behavior analyst specialist in Orange County, California. She has been active in the field of ABA for nearly 20 years. She is also a mother to three children, one of whom was dual diagnosed with ASD and Attention Deficit Hyperactivity Disorder (ADHD) at 5 years old. Nicole is a fierce advocate for neurodivergent inclusion and considers herself an ally of the disabled community.

Addressing Aggressive Behaviors in Children

Aggressive behavior is something that parents of children with autism or emotional disabilities are often confronted with on a regular basis. It can be a challenging, frustrating and emotionally draining experience. Through the support of a professional behavior analyst and consistent practices, parents, teachers, and caregivers can address aggressive behaviors in children and adolescents so that they can live productive and independent lives.

Many times when caregivers are faced with aggressive behavior, their impulse is to want to stop the behavior, and they may view the child as misbehaving. However, it’s important to understand that aggressive behavior is sending us a message. Every behavior serves a function— such as making a request, avoiding something, escaping a task or seeking attention. The same is true of aggression. For individuals with limited communication skills, aggressive behaviors can become inadvertently shaped by caretakers and others in their environment.

For example, a child throws a tantrum to gain access to candy. The parent gives the child candy to stop the tantrum. If this interaction repeats itself, the behaviors become reinforced and the child learns that tantruming is rewarded with access to the desired food. Next time, the parent may decide they are not going to give the child candy and so the child tantrums even louder and harder. If the parent gives the child candy, the parent has inadvertently reinforced the behavior. As parents, we all do this in very subtle ways regardless of whether our child has special needs or not, often without realizing that we are shaping our children’s behavior and strengthening the behaviors that are unwanted.

When children are small, it can be less of an issue for parents to manage aggression, or they may think that their child will grow out of it. It is easier to restrain young kids to combat and control outbursts, but if these are the only methods we use, we are not setting our teenagers up for success. It is important to understand why our kids are acting out and what they are trying to communicate. Once we know the “what” and the “why”, we can teach more appropriate means of communication to replace the need for aggression (such as making a verbal request and teaching the child to tolerate “no” when the answer is “no”). If the aggressive behaviors are not replaced by more appropriate functional behaviors, then we run the risk of shaping adolescent aggression which can include physical violence that is more serious and tougher to overcome.

If your child is demonstrating aggression, the best place to start is an assessment of his behavior to understand why the behaviors are occurring. A good assessment will tell you what the function of the behavior is, meaning— why he is acting out and what he is trying to communicate. Then a plan can be put in place to teach new methods for communicating effectively as well as reducing and eliminating the aggression using behavioral strategies.

Here are a few strategies you can use before aggressive episodes start:

  1. Give up some control over the environment or routines by offering choices; it does not matter if he brushes his teeth before changing clothes, but if having control over that routine helps keep your child’s aggression down, give up that control and let him choose. Providing choice also teaches independent thinking and problem solving which are critical skills for adult life.
  2. Prime your child by giving them a verbal “heads up” of what is coming: describe to your child when and what the expectations are for that setting.
  3. Use visual support like a picture board or a photo to help provide clear expectations for each activity or different parts of the day.
  4. Prompt and model the behavior you want to see instead of the aggressive behavior.
  5. Praise that behavior when you do see it so that it will continue to be a part of their repertoire. Remember if you like something you need to let your child know. In other words, catch them being good and if you like a behavior, reinforce it!

In the moment of the aggressive behavior, safety is most important! Do your best to keep yourself and your child safe. If you can redirect your child onto something else or an activity, that might be necessary.

Some parents of adolescents who display aggressive behaviors worry that it is too late for their child to have a fulfilling and independent life. On the contrary, it is never too late to start planning on a future for your child and working towards attainable goals. Think about what you want your child to be doing in a year from now and start working towards that today. If you want your child to ask for the desired item or preferred activity instead of tantruming to get it, start taking small steps now. If you are hoping they will have more friends in a year, start exposing your child to those opportunities and teaching the socially appropriate skills that will afford those opportunities. If you want them to have fewer aggressive behaviors, do not wait a year to start working to improve that behavior. It is never too late or too early to start working towards next year. The results will support your child in having their needs met and experiencing greater success at each stage of development. The ultimate goal is setting your child up for success and helping him achieve as much independence as possible.

-Richie Ploesch, M.A., BCBA, and Ronit Molko, Ph.D., BCBA-D

The Benefits of ABA in Dual Environments

When a child is diagnosed with autism, parents become charged with finding quality treatment – and the evidence-based recommendation is to seek out Applied Behavior Analysis (ABA).  Choosing the specific ABA program that is right for a child can feel daunting, especially if ABA is new territory for a family.  In this article, we look at the benefits of a program incorporating both in-home and center-based programs.

Many proponents of ABA like to state, “ABA can be done anywhere.” It is true – but we shouldn’t overlook another important point: the environment itself is a critical component of therapy.  Controlling the environment to some degree is frequently part of the teaching process.  Selecting a teaching environment is a decision that impacts the rest of the teaching strategy and so also has an effect on progress.

Common teaching environments for young children with autism include center-based ABA therapy, private or public school, a childcare environment, and home programs.   While there is not enough research to prescribe a particular environment or model generally for children with autism, many parents and professionals are finding that a multi-site model of a controlled environment (such as a center-based program) and a natural environment (home, childcare, school) provides the best of both worlds.

Benefit #1 – Social skills can be targeted consistently and with children in the child’s community.

It is necessary for peers to be available regularly for consistent teaching; in this respect, a clinic setting is ideal for having regular access to other children to practice target skills.  Ultimately, the goal is for the child to interact with the other children in their community, their siblings, classmates, and neighbors.  Having a regular home component allows the therapist to work on target skills with the people who will be important in their normal daily life, even if these opportunities aren’t as regular as those in a clinic setting.

Benefit #2 – Controlled Environment vs. Natural Environment: Best of both worlds

A multi-site model allows technicians to address the most challenging skills in a distraction-free environment, but still have access to the home or school setting, with all of its naturally-occurring distractions, to make sure that those learned skills are being put to use.

Benefit #3 – Consistency of the Behavior Plan

When a challenging behavior is treated differently across settings, it is more likely to persist; this set-up can even make the behavior worse in the long-run.  The best treatment involves the same plan being followed across the day.  Having professionals use a consistent plan in both the home and center environments also supports family members to do the same.

Benefit #4 – Assessment of Generalization

All programs must address the issue of generalization, but a multi-site model is tailor-made for this.  Generalization can be specifically addressed right from the beginning, either by teaching in both environments, or by teaching in one place and testing generalization in the other.

Benefit #5 – Ease of Group Work Vs. Ease of Parent Training – You Get Both!

One of the most important aspects of the teaching environment is the people present.  In a center-based program, other children are close at hand for social interactions, peer modeling, and working on group instruction, so these parts of therapy can happen regularly.  When ABA sessions are at home, it can be more convenient for parents to make themselves available for training.  In a multi-site model, the child benefits from both of these types of teaching opportunities.

Whichever provider a family selects, they should be sure to work closely with their team to personalize the child’s program to best meet their needs and the goals for their family.

– Richie Ploesch, M.A., BCBA & Katherine Johnson, BCBA

A New Year to Make Progress 2019

We are happy to re-share this blog from a previous year that received so much wonderful feedback. We wish everyone a year of great moments, memories and progress.

Autism is in the news, social media, and print more than ever. The increasing awareness is great. The influx of research and funding options is even better! The heartwarming stories and success stories are inspiring. Still, misinformation and slanted headlines are annoyingly abound. Such is this complicated, passionate and ultimately very unique autism community. We are glad to be a part of it, and do our best to honor and respect the many contributing voices. As a community, we are making progress and continue to be optimistic that together, we can make great strides. We have no doubt that the most important person to each and every parent, day-in and day-out, is your child with autism.

So what will this year’s 365 days mean for you? We suggest this simple, but powerful idea: progress. When you’re past the notion that there may be a quick fix and come to terms that the pursuit of a cure won’t help you with today’s challenges, progress is the name of the game. Forget quantum leaps; each milestone met will offer its own reward. Know there will be set backs and rough patches, and keep moving forward.

BE PRESENT: There are many amazing therapists, doctors and teachers in the world who have taught so much about development and parenting. However, keep in mind that you are the one who is with your child every day. For real progress to take place, you gotta be in the game. Don’t forget to take time to just BE with your child and appreciate all the beautiful, unique ways they express themselves.

BE CONSISTENT: What is the 12 step motto…”the more you work it, the more it works”? Working consistently with your child’s team to implement strategies, even when it’s hard or inconvenient, propels the process.

BE A FRIEND/SPOUSE/PERSON: You can’t focus on autism 24 hours a day. Remember to make time for yourself, friends and family. When you do, life just has more balance and you’ll likely have more stamina for the work ahead.

BE GRATEFUL: Count your blessings, celebrate the wins and enjoy every single bit of progress. This is what makes it all worth it. No one else will feel joy quite the way you will. It’s awesome.

This year, we will continue to be moved, enlightened and sometimes annoyed by it all. Stick to a plan that works for you and your family, and know that come December 31, 2019, you’ll be able to look at another year passed – and call it good.

For great news and information, visit our blog, All Autism Videos and All Autism Talk.

Successful Toilet Training for Kids with Autism

Potty training, toilet training, toileting… whichever term you use, tackling these skills can be a big deal for kids and their parents. Children with autism spectrum disorder (ASD) are often delayed at the age of successful toilet training, even when compared to children with other developmental disabilities. The average age in which a child is successfully toileting was 3.3 years of age for children with autism in comparison to 2.5 years of age for children with other developmental disabilities (Williams, Oliver, Allard, & Sears, 2003).

Extended use of diapers may diminish personal hygiene, self-confidence and increase physical discomfort, stigmatism, risk of problems later with bladder control and restrict participation in social activities (e.g., camp, after school program, etc.). Extended diaper use for children with autism is also problematic because these children may become so accustomed to using a diaper that they often demonstrate resistance to toilet-training procedures and will prefer to wait for a diaper in order to void (Tarbox, Williams, & Friman, 2004). Teaching independent toilet skill can improve the quality of life for children with autism and their families. Families will definitely benefit from the decreased costs of purchasing diapers, their children will feel empowered to address their physical needs independently all while decreasing the risk of complications associated with extended diaper use.

Before beginning toilet-training procedures, caregivers should check with their child’s doctors to rule out any medical conditions that may prevent their child from being successful with a toilet training program. Upon getting medical clearance, the next step will be to determine whether their child is showing signs that they are ready for toilet training. The following questions will assist with this step:

  1. Does the child act differently or seem to notice when diapers or clothing are wet or soiled?
  2. Does the child show any interest in behavior related to the bathroom, toilet, hand washing, dressing, undressing or related tasks?
  3. Does the child show an interest in seeing other people involved in activities or with objects related to toilet training?
  4. Does the child stay dry for at least 2 hours during the day or does his/her diaper stay dry after naps?

Each child and family is unique; therefore, the toilet training procedure needs to be designed to specifically fit the child and his/her family’s needs. Generally, caregivers and their clinician should identify and agree upon the child’s preferred mode of communication to best indicate when they need to use the restroom. This can be a specific word or phrase (e.g., “Potty”, “I need to use the toilet”, etc.) or it can be as simple as a hand signal or the presentation of an image of a toilet. To increase the potential for success, caregivers should have a preferred item or activity available (e.g. special snacks, video, etc.) and present it as a reward the moment that their child successfully voids in the toilet.  This item should be reserved only for toilet training. The child should also receive lots of praise and high fives when he/she stay dry for a specific duration of time.

Going from using a diaper to using a toilet can be a big change and is extremely difficult for lots of children. If your child has a hard time with transitions, a picture schedule may be a helpful tool to remind him/her of what task are needed to complete the toileting routine. Some things to remember: make sure to have plenty of extra underwear and clothes, a comfortable potty chair, a timer, your child’s favorite drinks, and a positive attitude!

Toilet training may be a lengthy process and require a lot of patience. This is a big commitment but the payoff will be huge!  Make sure to consult with your behavior analyst along the way to ensure the procedure is clear and is tailored to your child and family needs.

Dai Doan, M.S., BCBA

 

 

References

William, G., Oliver, J. M., Allard, A., & Sears, L.  (2003).  Autism and associated medical and familial factors:  A case control study.  Journal of Developmental and Physical Disabilities, 15, 335-349.

Tarbox, R. S. E., Williams, W. L., & Friman, P. C. (2004). Extended diaper wearing: Effects on continence in and out of the diaper. Journal of Applied Behavior Analysis, 37, 97-100.

How to Select Appropriate Gifts for Kids with Special Needs

Buying the perfect gift for kids and other loved ones can be challenging, and this can also be true when buying gifts for kids with autism. To help make your gift-giving easier, here are a few helpful tips to keep in mind when purchasing gifts for individuals with autism:

 

Focus on the person’s interests and preferences

Research shows that incorporating preferences into the learning and play environment of individuals with autism, can reduce behaviors and can increase certain skills (1). So we can capitalize on what someone already likes! For example, if a child likes dogs, find games, activities, or toys that are dog-related. If a child likes swimming, activities involving water play may be a hit (e.g., water tables, sprinkler toys, water beads, grow capsules). Alternatively, if a child is sensitive to loud noises, a toy fire truck with a siren may not be appropriate. Ask friends and family of the person for whom you are buying the gift what that person generally likes and/or dislikes.

 

Focus on age-appropriateness

Although keeping a person’s preferences in mind when shopping for gifts is a great start, always consider the age-appropriateness of the gift in mind. For instance, a teen with autism may love playing with shape sorters, but considering that he is a teen and the toy is meant for toddlers, there are more appropriate toys with which he could play. Try finding gifts that have similarities to the original toy, but have age recommendations that correspond to the age of the individual for whom you are buying the gift. For example, rather than buying a new shape sorter for the teen, a more appropriate gift might be Jenga or a piggy bank. In Jenga, stacking wooden blocks in a pattern and pushing wooden blocks out of a block tower is a similar activity to pushing shapes through a shape sorter. Additionally, dropping coins into a piggy bank slot is a similar activity to pushing shapes through a shape sorter. Both of the aforementioned activities could serve as a more appropriate replacement for the shape sorter.

 

Focus on developmental-appropriateness

Many toys come with age recommendations, and while these recommendations are helpful, they might not always lead you to the perfect gift. A rule of thumb when purchasing a gift is to consider both the age and the development of the person for whom you are buying a gift. For example, the game “Apples to Apples” would not be developmentally appropriate for a non-verbal teen, even if it is an age-appropriate game. When looking for the right gift, focus on what the person can do. For instance, if the non-verbal teen mentioned above is great at drawing, then a sketch pad or an adult coloring book could be a more appropriate gift. If you are unsure what the person can do, ask friends and family of the person for whom you are buying the gift what skills that person has mastered.

Note: Be sensitive to how family and friends of a person with autism may feel when being asked questions about the skills of their loved one. If asking questions, always frame your questions from the perspective of accomplishment (e.g., what skills have they mastered) and not deficit (e.g., in what areas are they delayed) to be supportive and respectful of the individual’s growth and development.

 

Be mindful of behavior excesses/triggers

Some individuals with autism engage in behaviors that put them or their loved ones at risk of harm. For example, if a child engages in pica (e.g., eating of nonfood items), gifts containing small objects may pose as a choking hazard. For example, if a child engages in aggression towards others, gifts with violent content may not be appropriate, as additional exposure to violence may contribute to future instances of aggression. Alternatively, individuals with sensory-seeking behaviors may benefit from gifts that redirect their behaviors in more appropriate ways. For example, if a child rocks back and forth, a swing may be a great way to meet their sensory need. Additionally, certain objects can trigger behaviors in some individuals with autism (e.g., loud noises, highly preferred items, phobias, etc.). Ask friends and family of the person for whom you are buying the gift if there are any behavior excesses/triggers to consider before purchasing a gift.

 

Focus on toys that encourage interaction with others

Social deficits are a defining characteristic of autism, which means that when gift-giving, try to purchase gifts that encourage social interaction. While almost any activity can be turned into a social interaction, certain activities may be more conducive to social interactions than others. For example, instead of buying a computer game, consider the game Bop It, which is an electronic game that can be played in a group.

 

Focus on expanding their repertoire

Individuals with autism sometimes have restricted or limited interests (e.g., a person only wants to talk about trucks or only wants to play with dinosaurs). In order to help expand their repertoire, try finding activities that are new, but similar to current interests. For example, if a child’s favorite activity is playing with PlayDoh, kinetic sand or slime may be an appropriate gift to help expand their repertoire because it is similar to their current interest, but slightly different. Ultimately, gifts that will provide them with new experiences may act as potential new reinforcers (e.g., stimuli that increase behaviors), and may significantly enrich their learning environment.

 

Recommendations

Stores: Lakeshore Learning Center, Autism-Products.com, NationalAutismResources.com, Target, Kohl’s, Amazon, WalMart, iTunes (for apps)

Brands: Melissa and Doug, Fat Brain Toys

Apps: Proloquo2Go, Avaz Pro, Life360 (Find my family, friends, phone), Choiceworks

 

– Brittany Barger, M.Ed., BCBA

 

 

Resources

Increasing Task Engagement Using Preference or Choice-Making
Some Behavioral and Methodological Factors Affecting Their Efficacy as Classroom Interventions

Autism & Trick-or-Treating

Halloween can sometimes be a little scary for parents and kids, and not just because of ghouls or goblins. Between the sights, sounds and change in schedule, Halloween can present some “tricky” experiences for kids with autism and other special needs. Practice and preparation can make a big difference in creating a fun and successful holiday experience. We use Applied Behavior Analysis (ABA) strategies every day to help our kids navigate new experiences, and these strategies are just as useful during special events and holidays such as Halloween. Here are four concepts that you can use to make trick-or-treating fun for your family:

Social Stories

Social stories should start at least a week before Halloween, for younger children this can be accomplished with a book or even a video about a child going trick-or-treating. The book or movie should match as closely as possible with the kind of experience you want to provide for your child. The parent should present the video or book alongside a scripted social story told from the child’s perspective.

Visual Supports & Schedule

Visual supports can include a sequence of pictures that reinforce the trick-or-treating activities. For example, in one photo the child in their Halloween costume, and then knocking at the door or waiting at the stoop, in the next photo. A third photo of the child receiving candy helps reinforce the repeated actions, and pay off of the outing. Having a schedule outlined and expectation clearly indicated, should reduce maladaptive behaviors and increase expected responses. These visual supports could be created during the practice sessions discussed later.

Priming

The last antecedent strategy is priming; before going trick-or-treating, parents should inform the child of the expectation and indicate that after these responses are completed they will receive candy.

Practice

To keep Halloween fun and exciting, and reduce possibly overwhelming experiences for parents and kids alike, going through several trial runs are helpful. Find some time where everyone in the family can dress up in their costumes and practice walking, waiting and receiving candy.

Halloween fun is possible with a little extra preparation!

 

– Elizabeth Jeffery-Arceneaux

How to Plan for the Upcoming School Breaks

In Tucson, Arizona many of our kids are heading into their Fall Break.  Your child’s breaks may come at different seasons and times of year. School breaks offer opportunities and challenges for all parents and children. These breaks can cause disruption in family routines and increase in down time for the child, which may result in low levels of motivation and higher levels of anxiety and stress. For parents of children with special needs, these may seem magnified. Below are some helpful tips to consider when planning for your child’s upcoming school breaks.

 

Keep Similar Routines
This may be easier said then done however, keeping your wake-up and bed-times similar and filling the day hours with activities will provide your child a predictable, structured environment, a sense of stability, and decreased stress. By reducing the amount of unstructured free time, your child will be less restless and bored. Don’t forget to include the homework routine as you have worked so hard to develop and maintain this prior to the break!  It is still important for children to practice academic skills even though school in not in session.

Keep Busy
Find educational, recreational and social activities to engage in daily. This will limit the amount of time your child is at home watching TV, texting, or playing video games. Ideally, an outside activity such as playing ball, going for a walk or participating in a team sport would be on the schedule daily. Even if your child doesn’t play a sport, any exercise activity has obvious health benefits, and increased physical activity helps reduce repetitive behaviors and improve sleep. Some resources to find community activities are your local Parks and Recreation Department, newspaper, and libraries. Some examples of home activities are board games, arts and crafts, academic tasks, meal preparation, outside games and reading.

Have a Daily Visual Schedule
The whole idea of a school break may be confusing for younger children since they are still developing the concept of time. School breaks also challenge the typical Monday-through-Friday predictable morning, school and after school routines. Utilizing a visual schedule will help your child understand the “what, when, where and why” of their day. It is also important to involve them by letting them choose what activities they would like to do. You can also have them cross off completed activities as well as the days so they can see how many days are left until school starts.

Read to your child
Children are exposed to literacy concepts many times throughout their school day. Continuing to expose them to books while they are home will only increase their language development, listening, and comprehension skills. Reading to your child also stimulates their imagination and facilitates a positive interaction where they receive one-on-one attention from the parent. Research recommends that parents set a side a scheduled time each day to read to their child (Raisingreaders.net).

Limit electronics
Allowing a child unlimited access to TV and computer can lead to childhood obesity, lethargy, difficulty in school, and insomnia. The American Academy of Pediatrics recommends children be limited to 1 to 2 two hours of educational programming daily. Here are some ways to limit your child’s access to electronics: First, keep them out of reach and out of your child’s bedroom. Have your child earn their time with electronics upon completion of other activities. Specifically allocate times within the day that are appropriate for your child to have access to electronics.

Work on Social Skills
This is the biggest opportunity provided by school breaks. Integrating social opportunities within your child’s day can take many forms such as homework assignments, board games, community activities, sports, and play dates. Some parents forget that activities like swim lessons, apple picking, and vacation trips can all be valuable new settings to prompt the use of social skills.

 

Hey Tucson families! Here are some additional resources to help make your season great for the whole family:

 

– Lindsay Abbott, MA, BCBA, LBA

Halloween Costumes for Kids with Autism

As fall approaches, we get excited by the prospect of cool weather, warmly colored trees and the festivities that come with Halloween. However, selecting a comfortable Halloween costume for your child on the autism spectrum can sometimes be more of a trick than a treat. When selecting a costume there are three helpful things to keep in mind: types of fabric, the interest of your child, and how your child will react to wearing a costume, as well as seeing others in costume.

What do you do when your child has a favorite superhero, but the costume is anything but sensory friendly? Try decorating a regular t-shirt with fabric glue or a hot glue gun. You can also decorate comfy pants to match. Another option is to create your costume using clothing made from jersey fabric. The jersey material will be thinner than the t-shirt material so be mindful when applying glue.

When deciding what kind of costume to make, it’s a good idea to start with whatever your child enjoys the most. Is it Baby Shark? Outer space? ABC’s? Creating a costume tailored to your child’s specific interest will be both fun and highly-motivating for them.

Finally, preparing your child to wear their costume and see others in their costumes can be a difficult task. Familiarizing them with the Halloween festivities beforehand is a good way to ensure things will go smoothly. If you have any costumes around your home, show them to your child. You can also show your child pictures and videos of people in costumes or read them a social story about Halloween.

It may be Halloween, but choosing a costume doesn’t have to be scary!

 

– Kristen McElroy

10 Tips for Navigating the IEPs

The Outcome of your IEP process relies on you…

One of the most important discussions parents can have with their clinical team is about the goals they have for their child as they grow into adulthood. Most parents grapple with finding the time to think about their child’s long-term future when they are facing the daily needs of mealtimes, sleep schedules, or having a successful play-date. However, as tough as this discussion is, it is critically important to start this conversation early because the foundational skills that will enable your child to function well as an adult are taught and acquired during childhood.

A significant part of a child’s development will be determined by their school environment, academic placement, and the academic curriculum that guides their learning. A child’s initial Individual Education Plan (IEP) is critical. This important document will lay the groundwork for the types and level of services that a child will receive throughout their academic years. It is essential that parents put sufficient time and effort into preparing for their first and subsequent IEP meetings.

An Individual Education Plan (IEP) is a legal document that is developed for every child eligible for special education. This plan contains a statement of a child’s present level of functioning in terms of performance, educational needs, goals, levels of service, and measurable outcomes. The first IEP meeting is typically held before a child transitions into preschool or as soon as a child is identified as having a special need and determined eligible for special education services. An IEP meeting can be held at multiple times during the year: after a formal assessment; if a child demonstrates a lack of progress; or if a parent or teacher requests a meeting to develop, review, or revise a child’s current IEP.

There are some important steps that parents should consider when beginning the IEP process. We have outlined some of the most important ones for you here. The following guidelines can help you prepare for your first IEP:

  1. Understand the IEP Process and Know Your Rights. It is of paramount importance to read up on the IEP process, become familiar with IDEA (Individuals with Disabilities Education Act), and understand your rights as a parent. In addition to studying the law, many parents seek advice from an advocate and network with well-informed parents who have first-hand experience with the IEP process in their school district.
  2. Make All of Your Requests in Writing. All requests should be made in writing to create a documentation trail that provides a history of the child’s academic needs and requests to the school district (e.g., requests for an IEP meeting, an assessment of any kind, or a classroom placement recommendation). It also allows you to state your requests in your own words. In addition, ask the IEP committee to record these written requests as part of the minutes in an IEP meeting. The IEP committee can accept or deny these requests. If the committee denies the requests, then they must follow the procedural safeguards in IDEA and provide written notice of why they are denying your request. If the request is not documented in writing, the school district is not required to provide the service. (Be Familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503))
  3. Obtain Independent Assessments Ahead of Your IEP Meeting. The school team should not be recommending nor denying services without an assessment to evaluate the need for that service and neither should parents. You will want to request, in writing, that your child be assessed before the IEP meeting is held. Ideally, if all the necessary assessments are conducted prior to the IEP meeting, then the recommendations for treatments can be discussed during the IEP meeting. Be sure to request copies of the assessments, progress reports, and proposed goals in advance of the meeting, in order to have ample time to review and be fully informed during the meeting.
  4. Organize All of Your Records. Parents should have all of their records on hand and easily accessible during IEP meetings. Create a system of storing and updating all information that makes sense to you and that makes it easy for you to find the information you need.
  5. Observe the Classroom. Ask to observe any classroom where your child is being recommended for placement, so you can better understand if it would be a good fit. If for some reason the school will not let you observe, have a professional who is familiar with your child observe the setting.The law states that the team must start with the Least Restrictive Environment (LRE) which is the general education classroom as the first option and work towards a more restrictive environment only as necessary as needs come up that cannot be met with supports and modifications in the LRE. Therefore, placement should never be decided upon before the child’s goals and objectives are concluded. (see item #7 for Goals and Objectives)
  6. Formulate a list of Questions before your IEP. In advance of the meeting, prepare a comprehensive list of questions (a very long list is completely appropriate). During the meeting, assign someone on your team to take notes and write down answers to all of your questions. This allows you to focus on the conversation. A tremendous amount of information is exchanged at IEP meetings, and it can be overwhelming to absorb it all.
  7. Make Sure Goals and Objectives are Progress Oriented. Goals and objectives are one of the most important elements of an IEP. If the goals and objective are not written in a manner that is observable and measurable, one cannot determine if a child is making progress. Without this, the school can claim that a child has made progress without producing actual data to evidence the skills gained. In addition, the goals and objectives will specify what a child needs to learn in that academic year. This is the critical time to think more long-term. Will these goals serve where you want your child to be two years from now? Five years from now? Are they laying the foundation for the necessary skills that your child will need as an adult to live the most independent life he or she can? Get input from members of the team that work with your child before the meeting; ask for their opinion of your child’s progress and needs.
  8. Be the Host, Not the Guest. Since IEP meetings are held at the school district, parents typically feel like a guest at their child’s IEP. However, since the IEP meeting is about your child, parents can create a more personal atmosphere. For example: by providing snacks, pastries and light refreshments, you can put yourself in the position of host of the IEP meeting. Another idea is to bring a photograph of your child and place it in the center of the table to remind the team who and what the meeting is about- providing services to support this specific child in attaining his or her highest potential.
  9. Never Go Alone. The support of a family member, uncle, husband, friend, advocate, cannot be overstated. The IEP process can be  stressful, tiring, and sometimes overwhelming. Parents often share that having someone else in the room to support them, take notes and offer reassurance makes a huge difference. In some instances, parents obtain professional support from advocates or special education attorneys who specialize in the IEP process.
  10. Disagree Without Being Disagreeable. Once the team has made their recommendations and concluded the IEP, parents will be asked to sign the IEP document. The IEP document allows for them to sign that they were present at the IEP but that they do not agree at that time with the recommendations. This is a good option to exercise at the end of the meeting. It gives you the opportunity to take the IEP home to review later and have the option to request changes. This can be done in a very respectful way, allowing you time to make the best decisions that are best for your family.As a parent, you are a vital part of your child’s IEP team. You are your child’s best advocate and the person who knows what’s best and most appropriate for him. With the correct information and support you can create a comprehensive and suitable roadmap for your child’s future.

 

– Michelle Stone, M.S., BCBA. Based on an interview with David Wyles- a Parent’s Guide to the IEP.