My Child, the Athlete: Coaching a Child with Hidden Disabilities

Over 30 million youth between the ages of 5-18 participate in youth sports every year.

Some of the most common hidden disabilities are Specific Learning Disabilities, Speech and Language, Attention Deficit Hyperactivity Disorder, and Autism Spectrum Disorder. Athletes with these disabilities can experience similar difficulties in understanding and developing a specific skill such as understanding a play for football or a routine for cheerleading/dance as they do in the classroom. Many coaches will have the opportunity to coach a child with one or more of these disabilities but will have no idea of the characteristics and learning strategies that are best suited for the child.

Tips to successful inclusion of athletes with hidden disabilities:

Routine is important, create an atmosphere where there is consistency. Conduct practices on the same days each week and begin and end practice at the same time.

To promote inclusion offer different skill levels during practice to help the development of each athlete (entry level, intermediate level, expert level).

Provide clear instructions/directions with an overview of how practice will occur.

The use of gestures and physical demonstration should accompany verbal instruction. Repeat and clarify instructions as needed. For example, when showing a football player how to hold a football, cue the athlete to hold one end of the ball in the bicep of the arm and the first two fingers hold the other end of the ball.

Break the specific skill into steps. For example, when teaching a basketball lay-up, first practice the dribble to the basket, second practice jumping off one foot with the basketball, and then practice shooting into the basket. Combine all three skills when the athlete is showing they are able to complete each skill.

Positive reinforcement is encouraged to keep athletes on tasks. Allow the athlete to earn a leadership role such as captain or co-captain.

Prevent challenging behaviors by redirecting the behavior. For example, if an athlete is interrupting or talking at the same time as the coach, have the athlete to help with the demonstration. This also encourages self-control.

Sports experiences can either have a positive or negative effect on a child. The interactions that a child has with their coach and teammates can affect their self-esteem. Creating a supportive environment that is respectful, inclusive, and celebrates the athlete’s development can enhance the child’s confidence and social skills.

 

Part 1 of 3 Age of Majority and Guardianship Alternatives to Guardianship; Resources and Family Stories

Guardianship is a big topic for many families and we thought it might help to clarify some of the questions that you might have.

This will be a 3 part series and we will discuss many topics including; age of majority, basic guardianship information, provide some alternatives to guardianship and share information about a concept called supported decision making.   Additional family resources and family stories will also be included.

Part 1, will focus on:

  • Age of majority and why it’s important,
  • Basic definitions of guardianship,
  • Some reasons families choose guardianship and guardianship misunderstandings

These articles will be written from a parent’s perspective and are not meant to provide legal advice.  Legal matters are best served by consulting with an attorney.  That said, here we go…

So what is Age of Majority and why should I be concerned?  RCW (Revised Code of Washington) 26.28.010 says, “Except as otherwise specifically provided by law, all persons shall be deemed and taken to be of full age for all purposes at the age of eighteen years.”  That means your student can make any and all decisions that affect their life like; attending/leaving school, getting married, moving out or buying that new apple phone.

When students are getting close to the age of 18, schools will often bring up the “Guardianship” conversation.  Schools are not required to invite parent or relative to IEP meetings after the student reaches the age of majority.  WAC (Washington Administrative Code) 392-172A-05131(1)(b); “At 18, a student’s educational rights are transferred from the parents to the student.” WAC 392-172A-05135(6) states “Students who hold their own education rights can authorize any adult to make educational decisions for the student by using a power of attorney”, what if your daughter choses her 35 year old boyfriend?  Just sayin’!

I don’t know about you, but I wasn’t ready to make many decisions myself at 18 and my parents provided much needed guidance well into my young adult life.  If your son or daughter is living with a disability that might impact safe decision making, sometimes referred to as “executive functioning”, then you may want to continue to assist with major life decisions.  Guardianship may be your solution.

Basic Guardianship Definitions

Guardian – Webster defines a guardian as a person who guards, protects, or preserves; Law, a person who is entrusted by law with the care of the person or property, or both, of another, as a minor or someone legally incapable of managing his or her own affairs.  “A person legally responsible for the care of another”. Spokane Guardianship Monitoring Program

Incapacitated Person – “A person who is determined by the court to be unable to provide their own needs to the point where they need someone appointed to manage their personal and/or financial affairs”.  SGMP

Letters of Guardianship – “A document issued by the court clerk which evidences the guardian’s power to act for the incapacitated person”.  SGMP

Fiduciary Duty – “The highest legal duty one owes to another when entrusted with the management of another’s property and/or personal affairs”.  SGMP

Types of Guardianships – Limited or Full, of the Person or Estate or both Person and Estate.

Some reasons a family or friend might chose to become an individual’s legal guardian

My daughters is a junior in high school and her teacher said I need to become my daughter’s legal guardians to continue participating in her IEP development. Your daughter can write a letter to school letting them know that she would like you to continue to participate in her IEP meetings.  Remember, the student can invite advocates to attend their IEP meeting whether it be their parent or others who have knowledge to contribute.  If the school asks for a more legal document you can have your student sign a power of attorney giving you the right to participate.

My son won’t be able to handle the social security benefit he will be receiving from Social Security. You can become the Representative Payee – for more details please refer to Social Security Administration @ ssa.gov  There are professional organizations that can also provide the service of Representative Payee, you might start with your local Arc for your county providers.

My son has intense medical issues that require my input. RCW 7.70.065 – “When an adult cannot give informed consent a hierarchy of persons who may make medical decision for and individual where a health care provider questions a person’s ability to make an informed decision”.  In many cases, this authority is sufficient, and no guardianship is needed.  You can refer to the RCW listed above to see the entire list of alternative decision makers.

Guardianship Misunderstandings

My loved one will lose all of their rights. Not so.  On the order appointing guardian, there is a section referred to as “Limitations and Restrictions Placed on the Incapacitated Person”.  There are 9 specific rights that can be limited or restricted and they are; the right to vote, marry or divorce, make or revoke a will, enter into a contract, buy, sell, own, mortgage or lease property, possess a license to drive, consent to or refuse medical treatment, decide who shall provide care and assistance, decisions regarding social aspects of your life.  There is also an “other” box if there is another concern not listed above.

Now that I’m the guardian, I can force my daughter to live at home …forever. Not so quick, part of the definition of guardian duties is to make decisions that support the wants and desires of the person you are guardian of.  Decisions a substitute decision maker can’t make are; sterilization, anti-psychotic, restraint, placement against will, psychosurgery, and shock treatment.

I won’t be able to afford an attorney. In the state of Washington, if the individual you are proposing have a guardian has less than $2,500 (check with your county) in assets and is over the age of 18, the state pays for this process.  In some counties, parents are responsible for the In Person training manual that cost about $20.  Filing fees are waived and a Guardian Ad Litem processes most of the paperwork.  That doesn’t mean you don’t have a lot of paperwork ahead of you, it just means that cost is no longer the barrier.

In the state of Washington there are 5 Guardianship Monitoring Programs.  These programs can provide you with information packets, guidance (not legal advice) and additional information.

Spokane

Snohomish

Benton/Franklin

Skagit

Clark

Our next article will discuss Alternatives to Guardianship and Supported Decision Making.  Stay tuned!!

 

What is Person Centered Planning?

What it is?

Person Centered Planning is a process focused on celebrating the gifts, talents, and dreams of a person, and on helping that person develop action steps to move closer to their dreams and goals. It involves 4-5 gatherings, usually in the person’s home, where friends, family, and others chosen by the family, brainstorm together about how to enrich the life of the person with special needs.

Gatherings are facilitated by people who listen, ask questions and draw pictures
and words that represent the desires of the focus person.

What makes it special?

Person Centered Planning is deeply personal. It is done specifically to listen to a person’s feelings and goals without judgment. It is done in a sensitive way that truly honors who that person is; Person Centered Planning explores all life domains, and future dreams. It is done to empower a person and his or her family to develop action steps that will support that focus person, and enrich his or her relationships.

How you can find out more about person-centered planning?

Workshops are sponsored yearly by Parent to Parent and local school districts. Anyone is welcome to attend. At the workshops, young people and adults who have experienced Person Centered Planning share their experiences about how
Person Centered Planning has affected their lives.

For more information about workshops, or to learn more about how you can develop a Person Centered Plan for yourself or a loved one,
please call Michele Lehosky 253-565-2266; mlehosky@wapave.org

Sponsored by Pierce County Parent to Parent in partnership with PAVE,
Peninsula, Franklin Pierce and Clover Park, School Districts.

 

A Sibling Perspective

When I was younger I never noticed anything wrong with my brother.

Sure, he was very hyper at times and I do remember taking him to speech therapy with my mom but nothing crossed my mind. I never realized my brother was different. One day at school, I was about 9 and my brother was 12, we were waiting in line outside of the lunchroom to go inside and eat breakfast. Nothing seemed wrong or out of the ordinary, until a group of kids in my brother’s grade walked over to us. They all surrounded us. Suddenly, they looked at my brother and the leader of the pack suddenly called him a “creep”. The group around us laughed. The same boy then started to call my brother other crude names. My brother looked puzzled and just kept saying “stop” but no one listened.

I then had enough of this name calling game. I stepped in front of my brother and said, “Stop calling him those names. He is not what any of you say at all. Leave my brother alone.” After I said that I wished I hadn’t, but somehow, I knew what I was saying was right. Who am I? I was just a 9-year-old little girl. I had no knowledge of people with disabilities at all. I didn’t even know what “creep” or any of those other words meant, I just had that gut feeling in my heart that something wasn’t right and I knew I had to stick up for my brother at that very moment.

My brother picks on me like a normal brother is supposed to do, and sometimes he takes it way too far. Occasionally I do reply, not very nicely, but after I say something back I feel bad. I promise myself I will try harder next time to remember that yes, he does seem ok at times but he still has autism. I love my brother. I wouldn’t ask for any other sibling in my life. He has helped me and supported me at times too. He always knows when something is wrong and he always asks if I am ok.

So, what’s my perspective on having a sibling with a disability? Well, it’s not very simple you see, sometimes I do wish he was normal and understood everything correctly, but then again, I don’t. Having a brother with autism has taught me many things. No one is perfect, normal is fiction, don’t ever underestimate someone’s abilities, be a leader not a follower, learn from mistakes, and the most gifted are the least expected. My brother is actually a very talented person. I like to think of him as a sculptor. I remember when he was little he would make little men with weapons and tanks out of silly putty, gum wrappers, and Nerds boxes. Every once in a while, I still give him my extra Nerds boxes or gum wrappers because I know he really likes making new little men. He’s also very good at voice impressions; he makes me laugh every time he does one.

My brother makes me laugh in general.  Yes, it is hard to explain to everyone how my life with a sibling with a disability is but let me tell you something, he is one of those people that you could not forget. My brother is not normal but neither am I. I am not afraid anymore of being me, and yes, I am a very weird person but hey, at least I am me and so is my brother. I look up to my brother because he’s not afraid of being himself.

 

Positive Behavior Supports: Continuing the model at home and in the community

By: Dr. Vanessa Tucker, PhD., BCBA-D

What is Positive Behavior Support?

Positive Behavior Support (PBS) is a special education initiative that informs school districts, schools and classrooms regarding prevention and intervention practices designed to teach and reinforce pro-social behaviors. Behavior supports, as we parents well know, do not end at the schoolhouse door. Interfering behaviors can and do continue to manifest themselves in other settings and present a real and present challenge to parents and caregivers raising children with special needs.

The field of PBS is built on the premise of universal interventions that are designed to teach behaviors that prevent negative or challenging ones from occurring. These universal interventions, or Tier I, are effective for most children, but approximately 15 to 20% will need something much more intense in order to experience success. These children require what are known as Tier II and Tier III Interventions. Tier II interventions are designed to address the 15% who need more focused interventions. These may be temporary or may be needed on an ongoing basis. A small number of children (approximately 5%) will require intensive interventions, or Tier III, designed to support the most challenging behaviors. As a parent, you may find that problematic behaviors are a top priority for you due to your child’s unique needs. Parents can benefit from applying the same basic system of PBS in the home and community in order to mitigate the presence of interfering behaviors as well as teaching and reinforcing acceptable replacements. The focus of this brief article will be on prevention tactics that parents and caregivers can implement in the home and community.

Prevention as Intervention

Challenging or interfering behaviors occur for a wide variety of reasons. In many cases a communication breakdown is the “culprit.” In other words, children who have communication delays often resort to behaviors we don’t want in order to let us know what they do want! Children may also engage in challenging behavior due to stress, fatigue, unmet needs for attention, or because they have learned a habit that “works” for them. For example, the child may engage in mild to moderate aggression toward a parent when they first arrive at home as a means of accessing attention. This is problematic as the child inevitably is reinforced for these behaviors when the parent provides the designed attention. The first order of business in PBS is to teach and reinforce behaviors and/or to change our own practices as a means of prevention. In addition, it is strongly recommended that you work with your school team and utilize the Functional Behavior Assessment (FBA) and Positive Behavior Intervention Plan (PBIP) to guide your interventions at home. Pay close attention to the described “function” or reason(s) why your child engages in challenging behaviors. You’ll want to plan your interventions based upon those hypothesized functions. For example, if your child’s aggression is due to escape from unwanted tasks, you’ll want to find ways to help him escape (e.g. ask for a break) successfully. Remember that whatever you select as an intervention should be acceptable to you and your family.

In order to be efficient, you will want to analyze the various times, areas and places where challenging behaviors are most likely to occur. Create a simple matrix of your activities and rate your child’s behaviors as (a) non-problematic, (b) somewhat problematic, or (c) very problematic. Target those areas that are “very problematic” first. Decide what could be creating or maintaining the problematic behavior. Is your child in need of communication supports? Does he understand what is expected of him? Does she need more visuals in order to do what you want? Is her need for attention being met in ways that are unacceptable? Are there sibling issues? Tackling the most difficult areas first will bolster your ability to dive into the smaller issues later and may actually address them inadvertently through your interventions with the bigger ones.

The following table (Table 1.0) presents a list of general recommendations and justifications for prevention of challenging behaviors at home or in the community.

Table 1.0 Tactics for Prevention of Challenging Behaviors

TacticRationaleExample
Non-Contingent Reinforcement/Planned AttentionYour child may need your attention and will engage in whatever behavior necessary to obtain it. You want your child to obtain your attention without having to engage in mild to moderate behaviors to receive it.When you come home spend the first 10 or so minutes with your child before you check email, answer the phone or do anything else. Plan this and stick with it. Give your child (or children) your undivided attention before you do anything else.
Schedules-Visuals and/or WrittenYour child may need the same structural supports that they use in the school setting in order to predict what is coming, what is done, and what is expected of them. They may not be able to predict these things as successfully if given with verbal prompts only.Create and use schedules with visuals or words for family routines. This might include an activity schedule for evening activities, for a bathing routine or a trip to the store. Rely on your school staff for support in this area. They can assist you to build and use these systems.
Transition Schedules and ObjectsYour child may need more information than you require in order to successfully understand and navigate transitions. You may need to provide him with more information about what is coming and what will happen. Challenging behaviors may result from a breakdown in understanding what is coming or what is expected.Create a transition schedule such as a white board with icons and/or line drawings. Some children benefit from a basic checklist that they can “check off” as they go. Others need a transition object (e.g. a teddy bear, or something else that is comforting) in order to successfully navigate transitions.
Demand-free time after schoolAll children are tired to some degree or another after school. For some children, the social demands of school have left them with very little in the “tank” at the end of the day. Behaviors may occur because the child needs rest from social and other demands.Consider providing 30 minutes or more of demand-free time (e.g. no homework) after school. Pair this with a timer and allow the child to engage in something that is soothing, restful and relaxing. Don’t pair this with their favorite and most reinforcing activity-save that for after they complete what you want later in the evening, especially if that involves homework or chores. Engage them in a schedule with demands (homework and chores, etc.) after a period of rest.
Homework and ChoresA child may balk at the idea of homework and/or chores, which are regular expectations of most parents after school. You may find that children engage in a lot of challenging behavior around these two areas.Consider the rest time after school as the first line of defense. Then, consider using a visual system that breaks down what they have to do, how long they have to do it, and when they are finished. Break things into smaller pieces (called “chunking”) and consider pairing with breaks in between each piece. Show visuals of what you expect the finished product to be. For example, what does a clean bathroom look like? Show each part in a picture format.
Token SystemYour child may not be particularly motivated to engage in things that are outside of his/her interest area. Challenging behaviors may occur despite your efforts to provide visual structure and break things into smaller pieces. She may need a more tangible way to motivate her to comply with what you want.Consider adding in a token system designed to provide reinforcement for desired behaviors. If possible, mirror the ones used at school if they are effective in motivating the child to comply. Creating a “First, then” procedure allows the child to see that after they do what you want, they will get something that they want. For example, “first clean bathroom, then 20 minutes of iPad” is a reasonable expectation. Provide tokens (stickers on a chart, poker chips on a velcro board) for each step of the bathroom clean up. Make sure you follow through with the earned reinforcer once they’ve complied.

Summary

Challenging behaviors in the home and community are never easy for parents or caregivers to address. Working with your school team, you can come up with ways to support your child so that they understand what you want and have the tools to engage in replacement behaviors that are acceptable to everyone. Many children with disabilities benefit from the same basic principles of PBS that are used in schools. A focus on prevention can decrease stress, increase compliance and teach replacements that lead to better behavior in all settings.

Supplemental Security Income (SSI)

WHAT IS SSI?

SSI is a monthly financial benefit from the Social Security Administration to people with limited income and resources who are age 65 or older, blind or disabled.  Blind or disabled children, as well as adults, can get SSI.

In most states, SSI determination is required for Medicaid eligibility of children with disabilities.

ELIGIBILITY REQUIREMENTS:

  • Financial Determination
  • Parental income is deemed, counted then prorated among the family members
  • Exclusions
  • Income includes Earned and Unearned Income
  • Parental Resources are counted
  • Disability Determination

Specific requirements:

Marked and severe functional limitations as defined by the Social Security Administration the limitations must have lasted or are supposed to last for a continuous period of 12 months or longer

The decision is made by a State Agency, Disability Determination Service, specifically,  a team composed of a disability examiner and a medical or psychological consultant

What does the Social Security Administration Need?

  • Social Security Card for all children
  • Proof of Age—Birth Certificate for all children
  • Citizenship—Birth Certificate
  • Proof of Income—3 months LES
  • Earned-wages and special pays
  • Unearned Income-BAH/quarters and BAS

Proof of Resources:

  • Bank statements
  • Deed or tax appraisal
  • Insurance Policies
  • Certificates of Deposit, Stocks and Bonds

Proof of Living Arrangements:

  • Deed, tax bill, or lease receipt
  • Medical Assistance Cards
  • Information about household costs, (utilities)

Medical Sources of Information:

  • Medical Reports stating disability
  • Names, addresses and telephone numbers of doctors and other medical service providers
  • Names and Documentation on how disability affects the day-to-day activities.

How To Apply?

Go to local Social Security Office, ideally in the middle of month for faster service

Call the SSA office at 1-800-772-1213

While stationed overseas and you think your child may be eligible for SSI, you can apply by contacting the Federal Benefits Unit at the following Embassies or Consulates:

Germany Federal Benefits Unit
American Consulate General
Giessener Str. 30
60435 Frankfurt, Germany
Phone: 49-69-7535-2496
Fax:  49-69-749-352

England Federal Benefits Unit
American Embassy
24/31 Grosvenor Square
W1AW 2LQ London, England
Phone: 44-207-499-9000
Fax: 44-207-495-7200

Japan American Embassy
Federal Benefits Unit
1-10-5 Akasaka
Minato-ku, Tokyo
107-8420 Japan
Phone: 81-3-3224-5000
Fax: 81-3-3505-1862

Korea Social Security Division
Veterans Affairs
Regional Office
American Embassy
1131 Roxas Boulevard
0930 Manila, Philippines
Phone: 63-522-4716 or 63-2-526-5936
Fax:  632-522-1514

Things to Remember

  • It can take up to 180 days for approval.
  • Payments are retroactive to the date of application.  Your initial contact may be considered the date of contact.
  • 1 of every 5 applications are denied—APPEAL.*
  • When talking about the disability discuss the worst days, not the best.
  • It is necessary to complete both disability and financial determinations when assessing eligibility. This is because SSI eligibility determination may be used in other programs within your state.
  • Establishing the disability eligibility will enable your child to receive SSI when they turn 18 and the parent’s income is no longer considered, or if their economic situation changes.
  • *Tip: Appeals to decisions are common and a right for your child
  • Special Consideration for military families OCONUS
  • Continuation of SSI benefits for families who PCS CONUS to OCONUS who meet the following criteria:
  • Was eligible to receive SSI in the month before parent reported for duty overseas—payments will continue from the state you last were eligible

Report information regarding:

  • Moves of the child
  • People move into or out of the home
  • Changes of financial status
  • Leaving the Armed Forces and remaining overseas

For more information visit the SSI web page

“Working Together with Military Families of Individuals with DisAbilities!”

Person Centered Planning and Aging Families

At the age of 56, a single parent from the baby boom age, my youngest son is now 26, and at this time in my life I need to plan for my retirement.

In a few years I will be heading toward the twilight of my life, so I need to take into account how that affects the life of my son, Kyle, who experiences Down Syndrome. Just like many families who live with and care for their adult sons and daughters for most of their life, it is my responsibility to share vital information that I might be the only one who knows, such as how, what, when, and where services are to be received. This way all the hard planning that has made his routine and the quality of life possible can continue even when I’m no longer able to care for him or myself as I age.

Up to this point most families don’t plan for such events, thinking that they will outlive their loved one with a developmental disability, brushing aside thoughts of what the future might hold for them. If I don’t think about it won’t happen. So usually what happens is when the parent or care giver has a medical emergency there is no plan of care or support for themselves or for their adult son or daughter with a disability, leaving both in need of a plan of care. It will be important to identify who it is left to sort through the maze of services, or lack of services, to help during this very vulnerable time.

Person Centered Planning is a tool that is used to help people plan for the future. Just as you plan along awaited trip you use a simple guide to help you make the journey comfortable to enjoy your precious time you have set aside. When it is time to plan, bring together the people who will be in the family’s life at that critical time. Usually, it is left up to siblings who have not been very involved in their sibling’s day-to-day care. Their parents did a really good job of caring for their sibling, but most find out the hard way what the daily routine looks like for their sibling.

By using the Person Centered Planning method, you have a document on hand so that you are able to have input into a plan of care before a crises.

Aging parents must start thinking about drafting a will and learning about trusts for your peace of mind. Think about the use of Person Centered Planning as a tool, as it can help relay your wishes and concerns. Share information about their care, like who their doctors are, what their care plan is, and other things like a living will. This is in case the parent loses their ability to share vital information to the people who care and to service providers who need to plan action steps.  What history of care has been provided, what are the needs, who can help, what is the plan of care when you or I are not able to communicate the needs of our adult sons and daughters?  As we age, the plan becomes the family plan, not just for the individual but for the whole family, including the network of support and those who will be left to sort things out.

The process helps pull together all their important information so that people who come in and out of the person’s life have something with which to help plan a positive quietly of life for the  individual and their family.

Pierce County Parent to Parent has also put together a care notebook that helps families keep important information together for when the parent is no longer able to speak for themselves or share information that is important, not just for the individual with the disability, but for the family itself.

For more information on Person Centered Planning contact Michele Lehosky at PAVE by email at mlehosky@wapave.org or by phone at (253)565-2266.

Reunited photo courtesy Jenn Durfey via flickr

 

Surviving Parenthood

A parent received a call from her son’s middle school art teacher.

He asked if she could drop by after school to discuss her child’s art project.  Thinking that her “darling” might have finally shown some artistic ability she arrived at the classroom expecting that he might have won a prize or was going to be nominated for an award.

The art teacher produced a large piece of pottery that resembled a bowl with a stem, something Sherlock Holmes might have used.

This parent was confused—it didn’t look like anything that would win a prize. Ever the supportive mother, she was willing to be “proud” until she was told by the teacher that he was pretty certain it was an attempt to make paraphernalia that was not allowed at school.  Apparently, this misguided little artist wasn’t the first to try this and probably would not be the last.

The parent was sent home with the object.  Rest assured, the object caused major communication between that student and his parents.  The piece of art sits carefully tucked away, unused.

 

Merry Christmas and Plug Your Ears!

While the holidays can be the most amazing time of wonderment for some children, it can also be a time of torture for our children with special needs. Particularly for our children with sensory and cognitive disabilities.  Routine and environmental supports fly out the window with the news that Santa Clause is coming to town! Yet, how do you balance the happiness of the holidays for your typically developing kids with the needs of your child with special needs?   This was never easy, but if not done it could make the holidays miserable.

When our daughter first came to us, she joined our family of 3 very lively boys. The first year of the holidays was not as expected with her acting out, crying constantly, and not able to sleep.  Of course this was 25 years ago and little was known about sensory issues, her diagnosis of FAS had not been shared with us and we were very confused.

As the years went by, out of desperation, I’m sure, we developed a great program for making the most of the holidays. Without a diagnosis or putting a name to her issues, such as “sensory dysfunction”, we instinctively made new traditions to make the holidays happy once again.

Any shopping with our daughter was short, sweet, and at a time when the stores were not at peak capacity.  The Christmas picture with Santa was scary for her and there were some years she wasn’t in it.  The Christmas tree was decorated only one week before Christmas as the anticipation of Christmas was just too much for her to handle, and Christmas presents were never put under the tree until Christmas Eve after the kids went to bed. There were events that were just too overwhelming for her and although the boys enjoyed them we didn’t take our daughter as we knew we all would pay the price of over stimulation.  A special movie night at home was planned for her with one parent, and the boys went with the other parent. The Christmas program at school was so sweet, but for our daughter it was terror to get up in front of a crowd. We worked with her teacher for her to sit with us in the audience and watch her classmates and the meltdowns we were experiencing were greatly reduced.  As the year passed and we began to understand more about her sensitivities, we developed coping strategies such as headphones with her favorite music, sunglasses for too much light, soft textures in clothing, and foods with very little texture.

Parent instinct is a wonderful thing. We never had any formal training or information, but as parents we learned to trust our instincts. You know your child better than anyone and instinctively know what is best!

Our daughter is now an adult with an amazing ability to self-advocate.  She takes her headphones everywhere, is not afraid to tell anyone they are being too loud or that she can’t handle the over stimulation and will remove herself if she feels overwhelmed.   She is a success, and isn’t that what we all want for our children? With a little planning, awareness, and understanding, your family can also have a more joyful holiday season, paving the way for success.

Merry Christmas, and Happy Holidays!