Advocating for Your Child with Chronic Pain

When it comes to children with special needs, most teachers are trained on how to deal with intellectual and learning disabilities. Even if they do not have specific training, they will have a team of special education professionals who are ready to assist them in providing appropriate modifications for these children. If your child has a chronic pain condition, you may find that the school services are less accommodating. Here’s how you may be able to advocate for your child.

Know What Your Child Needs

According to Boston Children’s Hospital, research has found that children with chronic pain conditions do best when they attend school regularly. Being in the classroom and around their peers makes it easier for these kids to cope with their pain. While they will have days that they have to miss, your goal should be to keep them in school whenever possible.

In most instances, even for those children who have debilitating pain, accommodations make it possible for children to succeed in spite of their condition. Often, the classroom and its distractions can take the child’s mind off of the pain.

Talk to the School About Accommodations

While your goal should be to have your child in school, for your child’s own well-being, you may need to ask for some accommodations. First, if your child has missed a significant amount of school while dealing with the pain condition, you may need to ask for a gradual return to the full demands of school. Taking it a little at a time, with plans for summer school and tutoring to catch up if needed, will help make the transition a more positive one.

Next, take some time to figure out what might be triggering pain episodes at school. If it’s possible to create a plan to avoid those triggers, talk to the child’s teacher and the administration about what needs to happen. Triggers may be classes, like physical education, that require a lot of movement, or they may be situations like extended sitting that can be avoided with modifications to the classroom environment.

If your child struggles to carry heavy backpacks, talk to the school about adding extra books to the classroom or allowing your child to keep a set of books at home, so she does not have to carry books in a backpack at the end of the day or from her locker to the classroom.

When pain gets out of control, it’s easy for a child to want to go home. Try to find a place in the school that the child can go to get a break from the demands of the classroom so he can gain control of the pain and return to school activities. If the school has a nurse, provide the nurse with the pain medication your child is using so it can be safely administered. Mae sure the child gets to see the school nurse when needed, but also make sure you are working with the teachers to ensure your child is not using the pain as a crutch to get out of demanding school tasks.

Push for a Plan

Children with chronic pain conditions that are officially diagnosed may qualify for an IEP or Section 504 plan. These plans outline the accommodations that the school will make for the child, and also prevent discrimination based on the child’s disabilities. If the pain is significant enough to impair the child’s ability to learn, which can be a common problem, then your child may qualify for an IEP. If not, then the 504 plan may be sufficient to get the necessary qualifications.

Why should you push for a plan? Once a plan is in place, it’s easy for teachers to look at and remember what needs to be done for your child’s success. It also serves as a reference point for you if you feel that your child’s needs are being overlooked. Finally, it serves as a reference point for future teachers to see what has and has not worked for your child.

Chronic pain conditions are often hidden, and it’s easy for your child to suffer under the radar while teachers focus on children with more obvious disabilities. As your child’s advocate, it’s crucial that you don’t let this happen!

Autism and Girls – How Autistic Girls Sometimes Fly Under the Radar

Autism is three times as common in boys as it is in girls, or even higher, according to most statistics, but some professionals are starting to wonder if these stats are accurate. A growing body of research is finding that more girls are actually autistic than those who are diagnosed, but present their symptoms in a different way. Because they are often less disruptive than boys on the spectrum, but suffer silently instead, girls with autism are misdiagnosed with other conditions, including ADHD, anxiety and social disorders. A better understanding of how autism, especially high-functioning autism, presents in girls is vital to providing these girls with the best possible services.

Hidden Differences Early

Girls on the spectrum are often able to hide their differences in the early years of school. When all of their friends are playing with dolls, an obsession with Barbies is seen as normal. The immature socialization of young girls is easy to mimic, and girls with autism are able to learn these social cues and learn to mimic much more easily than boys on the spectrum.

The differences between girls on the spectrum and their neurotypical peers are present early on, often manifesting in raging tantrums when routines are changed, but they are easily chalked up to immaturity and age-appropriate behavior. Because it’s less common for girls on the spectrum to show stereotypically autistic behaviors, they are often undiagnosed early on.

In fact, girls with autism often are quite non-autistic in their behaviors, when you look at a list of “traditional” autism behaviors. Girls on the spectrum will exhibit:

  • More desire to interact with others
  • Increased social imitation skills
  • A better imagination
  • Linguistic abilities that are developmentally appropriate
  • Shy or passive tendencies
  • Special interests in normal fields, like people, toys or animals

In addition, girl on the spectrum appear to be better at hiding their symptoms, avoiding public meltdowns and socially inappropriate comments, so others do not realize they are struggling. Because they can blend in, these girls often go undiagnosed. As a parent, you will notice the differences, and may even experience meltdowns and typical autistic behaviors at home, only to hear from teachers that your child does just fine in school.

Differences Solidify in Adolescence

It’s often in adolescence when girls on the spectrum find their differences to be the most challenges. As they begin to navigate more complex friendships and relationships, they find that they don’t fit into the mold of the neurotypical girl. This can lead to isolation and depression. However, because it’s more acceptable for girls to be withdrawn, many still overlook these symptoms. Also, when parents express concerns, doctors are often prone to diagnose a girl with an emotional disorder, like depression or anxiety, before determining they are on the spectrum.

What to Do If You Suspect Your Daughter May Be on the Spectrum

If you suspect that your daughter may be on the spectrum, getting the right testing and help may be a challenge. It’s important to make note of those things that seem to be “autistic,” and present those notes to teachers or medical professionals, and to keep pushing until you can get the necessary testing done. Remember, children on the spectrum thrive best when they receive an early diagnosis, so push for your child’s needs so that you can be the best possible advocate for your daughter, both now and in the future.

Becoming Your Special Needs Child’s Advocate

When your child has a special need, you instantly step into the role of advocate. Especially when your child is too young to speak up for his own needs, you have to fight to ensure your child gets adequate and just education and medical treatment. Being an advocate can be a challenge, especially if you find yourself feeling as though you are “going to battle” for your child, but it’s a vital role to fill. Here’s what you need to know about the role of an advocate.

What Is an Advocate?

According to the Autism Support Network, and advocate is someone who pleads on behalf of another. This is a very fitting definition for what you are about to undertake. As your child’s advocate, you are going to be pleading with those in authority to ensure your child gets the care he needs and the education he deserves.

What Does an Advocate Do?

Rather than looking at the definition of an advocate, we would be better off discussing what an advocate does. Here are some roles that you will be taking:

  • Gathering information – You are going to become an expert in your child and her diagnosis. You are going to gather information and documents to present to teachers and medical professionals as you advocate for your child.
  • Learning about the local schools – You are also going to become an expert in your local school district and what it does (and does not) offer. You will learn those who are in authority and how decisions about special education are made.
  • Know the legalities of special education – You are going to become an expert in the legal rights afforded to your child, ensuring that they get the most appropriate education for their specific diagnosis, condition and abilities.
  • Learning how to ask questions – If you don’t ask a question in regards to your child, no one lese where. You will learn how to dig to find out why something is being done for your child.
  • Learning to be a negotiator – Even though schools are required by law to provide appropriate education to all students, they aren’t always as equipped as they should be to do so. You are going to learn to negotiate with the school to ensure that your child is cared for, and the school leaves feeling that they “won” as well.

Ultimately, as your child’s primary advocate, it’s up to you to ensure that everything is being done to best assist your child in succeeding. You are going to take on many hats in this role, but in the end it is worthwhile as you see your child blossom and thrive.

How to Be an Advocate

As an advocate, make sure that you are doing what you can to make the process ahead easier on everyone, including your child. This means that it’s important to be respectful when dealing with teachers and doctors, so everyone works together as a team to achieve what is bets for your child. Remember to avoid taking out frustrations on these other professionals, even when you feel that your child is struggling. On the other hand, don’t let degrees and experience prevent you from speaking up. Remember, you know your child best, so trust your instincts when in meetings with medical or school professionals.

Why You Are the Best Person for the Job

Does this seem overwhelming? If you are new to having a child with a diagnosis, it can be. Don’t worry, soon it will seem like no big deal to be talking about IEPs and goal setting.

However, throughout the process ahead, it’s important for you to remember that you are the best person to stand in this role of advocate. Why? Because you are the one person in the world who truly has your child’s best interests at the heart of all that you do. You want to see your child succeed, not just in this year’s classroom, but also in life going forward. As you step into this role of advocate, remember that Caring4OurKids.com is here to help!

Partnering with Teachers for Your Special Needs Child’s Success

When your child with special needs heads off to school, it’s easy to feel overwhelmed as you hand the care of your child to another person. As your child’s parent and advocate, you need to understand that the classroom teacher is an important partner in the days and years ahead. Here are some tips to help you create a positive partnership to help your child succeed.

Keep the Lines of Communication Open

Being able to talk to your child’s teachers, even when you have concerns, is key. Keep the lines of communication open and positive. If your child’s teachers know that you support them, they will be more willing to listen when you have a concern. Know what form of communication the teacher prefers, and use that line of communication whenever necessary to get the information you need. When the teacher responds to your questions or raises concerns of his own, be willing to listen and consider changes as they may benefit your child.

Remember, however, that your child’s teacher has many students, as many as 30 in one classroom at a time, and your child may not be the only one with special needs. That’s why it’s important to respect your child’s teacher’s preferred form of communication. If your child’s teacher prefers that you contact her by email, then do so, giving her the freedom to answer when she’s not dealing with a classroom full of students.

Create Consistency

Children with special needs thrive in consistent environments. Talk with your child’s teacher about what you can do to create consistency between the classroom and your home environment, especially when it comes to school work. Present the teacher with tactics you have found to work to support your child, then ask the teacher what they would like for you to do at home as well.

Speak Positively About Teachers at Home

Sometimes in this journey, you are going to face a teacher that you simply feel is not giving your child the best experience. As your child’s advocate, you are going to need to address this, but don’t make the teacher’s job even harder by talking badly about the teacher at home. Remember to keep your conversation in front of your child positive about the teacher, even while making sure your child knows you are going to go to bat for him.

Know What Information to Provide

Sometimes, it can be overwhelming to know what information to give to your child’s teachers. What do they need to know, and what would it be best to overlook so they can avoid drawing conclusions? Consider presenting the teacher with a short, one-page description of your child, including both weaknesses and strengths, as well as information about the accommodations that have helped in the past.

Know What to Ask

When you meet with your teacher, know what to ask so you can get to the heart of the issues surrounding your child quickly. Remember, your teacher’s time is limited, and you don’t want to waste it or create frustration. Some questions to ask may include:

  • What will my child need to accomplish this year?
  • How will you measure academic progress?
  • What kind of accommodations would your recommend for my child’s diagnosis?
  • Is there any information about my child’s diagnosis that would be helpful for you?
  • What do you want to know about my child?
  • What can I do at home to support what you are doing in the classroom?
  • How should I communicate with you throughout the year?

Remember, when asking questions, keep things friendly and avoid becoming judgmental in your tone or approach. You are in a partnership with this teacher, so keep everyone on the same page.

Throughout the year, you are going to build a deep relationship with your child’s teacher. Even when times are challenging, you are going to need to keep that relationship open, honest and positive. With these tips, you will be able to build a good working relationship with the people responsible for your child’s education.

So Your Child Was Diagnosed with a Learning Disability – Now What?

When your child has a learning disability, the road to diagnosis can seem long and feel lonely. However, once you get that diagnosis, your work is just beginning. It can feel quite overwhelming to know what to do after diagnosis. Here are some starting points to ensure your child gets the best possible services after his diagnosis.
Get Informed
The first step in dealing with a new diagnosis is getting informed. You need to learn all you can about your child’s diagnosis and what it means, especially about how the brain works. Chances are you came from the doctor or therapist armed with pamphlets of information. Read these, and then dig a little deeper using resources available online and in other locations.
Find the Professionals
Next, take the time to learn about treatment and therapy options in your area. These may be based out of the school, or they may be in the community. Make appointments with your child’s doctor to discuss your options, and if your child is in school, make appointments to discuss your child’s diagnosis with the support professionals. For young children, make appointments with your state’s early intervention department. This will arm you with a team of professionals who are ready and able to help you understand and embrace your child’s differences.
Talk to Your Child
If your child is old enough to understand her diagnosis, take the time to talk to her about what you have discovered. Chances are your child will already be aware of the fact that she is not the same as her peers, and many children feel relieved when they have a label for what they have been experiencing. When talking to your child, answer any questions she might have, and try to remain positive, even if you are frightened about the future or the new “normal” that is coming to your family.
This initial conversation is the first step in helping your child grow into a self-advocate. Teaching your child to ask for help and state needs clearly to others is a key component to developing a successful learner and a successful adult. This is a skill that children with learning disabilities need, and it starts with the first conversation about what you have discovered.
As you talk to your child, be aware of the emotional side of this. As overwhelmed and emotional as you feel, remember that your child is experiencing even more intense emotions. After all, it’s your child who will live with a lifetime of consequences from the diagnosis, and that brings strong emotions. Be emotionally supportive as needed.
Start Discussing School Strategies
Once you have a diagnosis, it’s important to meet with your child’s school as soon as possible. Your child’s school will want to develop the IEP or 504 plan, and you will need to discuss recommended accommodations or assertive technology options that would help your child succeed.
The first days and weeks after a diagnosis can feel incredibly overwhelming. Soon, however, you will realize that your child has not changed. Now you simply know what you need to do to best help your child succeed. So take a breath, start your research and let the team here know what has been the most helpful as you started this journey.

Teaching Important Life Skills to Kids with Autism

Kids with autism have an excellent chance at enjoying happy and successful adult years upon learning life skills early and often throughout childhood. Repetitive practice of each life skill at an early age gives kids a chance to embrace independence without the repercussions of failure. As you lead your child through the various tasks, you will have the opportunity to offer correction and praise to reinforce the adoption of each skillset. You will need to go through the list of important skills your child will need to navigate adulthood to adequately prepare him or her for life in the real world.

Personal Care

For individuals with autism, self-awareness is not a skill that comes naturally. Therefore, personal care routines do not usually rank highly on the list of things to do. You may notice that your child does not worry about wearing clean clothes or brushing his or her hair. Skipping a shower or tooth brushing session does not give pause either.

Without learning to integrate these tasks into daily life, autistic individuals may struggle in adulthood. Since total wellness hinges on the ability to care for oneself properly, cavities, skin conditions and other health problems could arise from these missed routines. You can help your child adopt a daily personal care routine by providing a detailed task chart with each item broken down into small steps. Provide a sticker for each completed task to reward a job well done.

Home Living

Daily chores can help your kid with autism understand the demands of living in their own home. You should start slowly by assigning just one chore and breaking the task down into its most basic steps. Work alongside your child to model the correct task sequence. When tidying up the kitchen, for example, it is wise to show your child to wipe the counters before sweeping the floor to avoid having to redo the first task over again.

Once a week, rotate the chores to allow your child to experience the procedures involved in completing each task. Within several months, your child will have learned how to do the dishes, mop the floors, vacuum the carpets, make the bed, do the laundry, put away clothes, weed the garden, feed the pets and make meals. Over the years, increase your child’s to-do list to build endurance for completing a number of repetitive tasks in a row. Encourage your child to come up with his or her own chore completion methods and routines to improve independent thinking and planning.

Social Skills

Kids with autism do not always pick up on social cues that seem obvious to others. The missed social cues and a lack of self-awareness often cause difficulties maintaining friendships and relationships. Even work relations may become strained from this lack of awareness in social settings.

Have your child frequently practice talking to people in various situations. Allow your child to make purchases at the store, ask for directions, say hello in passing and maintain a short conversation to learn the basics in social skills. Talk about cues that indicate the way the conversation partner may be feeling at any given time.  

An important part of healthy social skills is the ability to excuse oneself for a break when emotions cloud judgement or become overwhelming. Teach your child to gently, yet firmly, request a break when key feelings or behaviors arise. These triggers will be unique to your child, so use observation and discussions to identify and utilize these important signs.

Transportation

Adequately moving through the neighborhood and surrounding city is an important skill that will frequently come in handy throughout life. You can instill good navigation and transportation skills in your child by allowing him or her to take the reins from time to time.

Take long walks or bike rides together and allow your child to use a map to navigate around the area. Encourage your child to plan a trip for the whole family using the local bus, train or subway schedule and have everyone follow the route to the intended destination and back home. Talk about vehicle and pedestrian signs and signals along the roadways to teach your child to stay safe while moving through the city. As your child practices these skills, confidence will build and the procedures will become ingrained in the mind.

If your child finds any step of the process overwhelming, break it into smaller steps. You can provide a procedural outline to help your child work through the problem from start to finish without triggering a meltdown. Have a backup plan available in case the stimulation on the public transportation routes feel too overwhelming at any given time.

Practice Makes Perfect

Helping your child build independence by learning these life skills will take plenty of time and practice. Take the teaching and learning process slowly to avoid overloading your child’s sensory system. By starting so early, you have the luxury of taking plenty of breaks from the process of teaching your child life skills. You can always return to the learning process once your child has enjoyed a healthy break. Consider your child’s normal state of independence, self-advocacy and adaptive abilities to gauge how to approach the teaching process. Use plenty of support tools, such as activity schedules, task outlines and reward charts, to keep your child engaged in the learning process without feeling overwhelmed.

Additional Resources

Developing Independent Living Skills

https://www.autismspeaks.org/sites/default/files/docs/ttk2_independent_living.pdf

Centre For Autism Life Skills

https://www.middletownautism.com/fs/doc/publications/bulletin-17-life-skills.pdf

Living With Autism

http://www.autism-society.org/wp-content/uploads/2014/04/buildingourfuture06.pdf

A List Of Apps For Social Skills And Autism Spectrum Disorders

http://glenwood.org/wp-content/uploads/2013/04/Social-Skills-and-Autism-Spectrum-Disorders-Application-List.pdf

Life Journey Through Autism: A Guide For Transition To Adulthood

http://www.researchautism.org/resources/reading/documents/transitionguide.pdf

Teaching Independent Behavior With Activity Schedules To Children With Autism

http://www.bergerlearning.com/docs/BergerLearning_ActivityScheduleOptimized.pdf

5 Important Classroom Accommodations For Autistic Children

Since autism spectrum disorder cause a wide range of learning disabilities that are unique to each child, classrooms must remain equipped to help every student work around those difficulties. Each individual’s executive function level and sensory processing difficulties play a role in the resulting learning disability types and severity. With 1 in 68 kids diagnosed on the autism spectrum, with many high functioning individuals, teachers at all grade levels must remain prepared to provide accommodations designed to mitigate those learning difficulties. With the right classroom accommodations, it is possible to overcome barriers to learning and help children with autism tackle schoolwork with confidence.

Daily Outlines

Difficulties with transitions between tasks and activities is common through the full range of the autism spectrum. Therefore, a daily class schedule detailing the broad activity categories for the day is a must. A detailed daily schedule will greatly assist with the transitions related to moving between the classroom, lunchroom, schoolyard and other destinations throughout the day.

It does not, however, have the power to assist with lesson micromanagement. Students with autism perform best when they know how to break up their time between each tasks required to complete the exercise or project in front of them. Teachers can provide an outline for each assignment to help students transition between the required tasks.

Alternate Media

Kids on the autism spectrum often have difficulties with visual or auditory learning styles. Teachers should provide multiple media options to suit each child’s specific learning style. For visual learners, a combination of literature, videos, pictures and charts relays the lesson information best. Auditory learners, on the other hand, often require an audio tape or recording of the written information for the lesson.

For children exhibiting difficulties with both visual or auditory learning styles, it is possible to provide tactile tools to convey the information provided with each lesson. Tactile tools may include flash cards, board games, pads for notetaking, computer games and craft projects. Although it can be beneficial for the students to try the other types of media from time to time, the best progress will be made with the child’s preferred learning style.

Sensory Tools

Up to 95% of autistic children have difficulties regulating their sensory system, which is often referred to as sensory processing disorder. Therefore, sensory tools, or fidgets, can help relieve the resulting stress and improve focus for autistic children as they attempt to learn in a busy classroom environment. The fidgets allow these kids to self-regulate their emotions and keep themselves on task when distractions compete for their attention. Many kids who are prone to repetitive behavior can keep their typical motions under control with a fidget in hand or under foot.

There are many different types of sensory tools suitable for classrooms, including stress balls, pencil toppers, tangle puzzles, clay, wiggle cushions, weighted lap pads, chair bands and foot rollers. Since fidgets are fun, yet low key, they are a nice tool to have available to all of the students to avoid having anyone feeling singled out or left out.

Quiet Corner

Classrooms are full of distractions that students with autism frequently find difficult to drown out. The screech of chairs moving across the floor, other students walking around, intercom announcements, flickering lights and school bells are all bothersome distractions that are near impossible for children with autism to ignore. Even strong smells can overpower the senses and dominate the mind of students sensitive to that type of stimuli. These distractions often become incredibly overwhelming to the sensory system, especially as the day goes on, which can lead to a meltdown.

To prevent sensory overload, teachers can provide their students with a place to escape the constant barrage of noise and visual stimulus by creating a quiet corner in a low traffic area of the classroom. The corner should have somewhere for the students to comfortably rest and allow their sensory system to calm down. Noise canceling headphones or ear plugs, sleep masks and weighted blankets can all help the student overcome sensory overload and prepare to begin the learning process anew.

Extra Breaks

Teachers can help the school day go much smoother by building breaks into the schedule. A single five minute break every hour provides much needed time to transition between tasks and recover from the demands of the classroom environment.

Breaks should also be available on an as-needed basis to allow students with autism to learn how to respond to internal cues and take the actions required to regulate their being. Without an adequate number of breaks each day, students may be prone to meltdowns from sensory overload and fatigue from constantly attempting to regulate themselves.

Kids with autism tend to return from the break reorganized and ready to focus on the task at hand. Teachers may want to suggest extra breaks at first to help kids become mindful of their feelings. Guided breaks also give kids a chance to see which break time activities provide the biggest benefits. Kids who seek stimulus may prefer to listen to music, while overwhelmed students may benefit from quietly working on a puzzle.  

Playing It By Ear

There are always going to be opportunities for teachers to further customize the classroom in an effort to mitigate the challenges autistic children face in school. Each child with autism provides a chance to observe the classroom accommodations that provide the biggest benefits and identify discrepancies in the learning environment. As teachers navigate the process of providing support for all students, it is important to utilize all of the available resources to create a learning environment friendly to all.

Additional Resources

Accommodating Children With Autism Within An Inclusive Setting

https://www.superduperinc.com/handouts/pdf/134_AutismintheClassroom.pdf

Technology Tools For Students With Autism

http://archive.brookespublishing.com/documents/boser-technology-tools.pdf

Autism Preparation Kit For Teachers

https://www.gadoe.org/Curriculum-Instruction-and-Assessment/Special-Education-Services/Documents/Eligibility%20Areas/Autism/autismpreparationkitforteacherspdf.pdf

Autism Speaks Family Services School Community Tool Kit

https://www.autismspeaks.org/sites/default/files/school_community_tool_kit.pdf

A Comprehensive Guide To Finding The Right Toy For Your Child With Special Needs

http://www.redwoodnky.org/assets/redwood/files/$cms$/100/1434.pdf