Hospital to Home

Without a doubt, one of the most stressful situations you can face as a parent is the hospitalization of your child.

Whether it is a planned stay, like a surgery, or an unplanned event, parents are bombarded with a huge number of shifts in their day-to-day life and priorities. Parents are also expected to step in and provide a lot of the care a child receives in the hospital once they are back home and that can be extremely overwhelming. While the purpose of this article is for families with a child who is medically fragile or has a life-threatening diagnosis, it is also meant to offer ideas for the unexpected and planned hospitalizations that can occur in all our families. Hospitalization and Emergency Room (ER) visits for many families with a child who is medically fragile or has life-threatening diagnosis is an ever-present possibility. The hope is to provide some tool kit examples and some ideas to ease the transition back home.

As a parent who has spent a lot of time in ERs, Intensive care units, and the medical floor during hospital stays, I have found that I was better prepared for what was going on and the transition back home when I asked questions and shared what home was like with the doctors, nurses, and therapists. I also found that the hospital social workers were my best friends when it came to asking about support for me as a parent. Even before you talk with the discharge planner check in with the social workers. They often have information about support groups, outside therapists/home help, vouchers, and financial supports that you don’t have the time to think about while your child is hospitalized.

Building relationships and the supports for you with the staff caring for your child can help ease some of the overwhelming confusion.  Especially when there is an extended medical emergency or complex surgery with a long recovery. Keep a small notebook to write down and track what doctors and nurses do, and record the answers to your questions when you ask them. If you have a smart phone, there are multiple apps for this on both iPhone and android platforms. Most important of all is making sure you take time for you and self-care.  This is often the hardest part and frequently we know it’s what we need to do and focus on other pressing priorities.  Remember, when you take time to renew it helps you be there for your family. While your child is hospitalized, the nurses are there to take care of them, so find ways to re-charge. Take breaks and find quiet time for yourself because once you get back home you are often the nurse and parent.

Vital links for your family and your child:

This first link is from the Agency for Healthcare Research and Quality (AHRQ) and takes you to a website that gives some good basic information and links to checklists. After clicking on the link below this text, go to the middle of the page. There will be a link to the “Be Prepared to Go Home Checklist and Booklet” is a good general tool to use. https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy4/index.html

The second link for a Neonatal Intensive Care Unit (NICU) babies or Pediatric Intensive Care Unit (PICU) babies and is really targeted to supporting parents of infants. https://www.ahrq.gov/professionals/systems/hospital/nicu_toolkit/nicu-packet.html

The last link is a great way for families of children with complex medical needs to prepare ahead of time just in case. This link is for the Family Voices collaborative care notebook template that has places for all of the information that goes with the care of your child. This tool can be used to provide information to the hospital and ER. Some families have used the child sheets or the emergency information sheets as a one pager to take with them to the ER or for extended hospitalization. This sheet provides the multiple doctors and staff that you see with consistent accurate information. There are also schedules that a child might need in their care and they can be used to record care needs in the home. http://www.fv-ncfpp.org/files/5813/0721/3621/Care_Notebook_-_entry_enabled1_reduced.pdf

These tools have been a great help in supporting my family with multiple hospitalizations and it is my hope they will be useful for you too!

 

Developmental Screening (Birth to Three and Medically needed developmental screening)

What is Developmental Screening?

Developmental screening is the practice of systematically looking for and monitoring signs that a young child may be delayed in one or more areas of development. Screening is not meant to establish a diagnosis for the child, but rather to help professionals and families determine whether more in-depth assessment is the next step. By using a high-quality screening tool, professionals can screen children for delays accurately and cost-effectively.

Think about your child’s first months. The medical professionals set up regular “Well-child” appointments just to monitor how your child is doing.  These “Well-child” visits allow doctors and nurses to have regular contact with children to keep track of the child’s health and development through periodic developmental screening. Developmental screening is a simple process that can have both informal and formal assessments. When using a tool that is more formal in nature, the short test can tell if a child is learning basic skills when he or she should, or if there are delays. Developmental screening can be done by other professionals in health care, community, or school settings.

We have heard many times over the years that a child’s greatest window for development is in the first five years of life. Eighty-five percent of the brain’s development occurs before age three, making the first years of life critical to a child’s future success. The research shows that early intervention greatly improves a child’s developmental and social skills. Early intervention services help children from birth through 3 years of ages. Services usually include the support of an early educator who works with the family, as well as therapy (if identified as a need) to help the child talk, walk, and interact with others.

It’s not uncommon for parents to become concerned when their little one doesn’t seem to be developing within the normal schedule of “baby” milestones. You may worry that he hasn’t rolled over yet, or that he isn’t doing what the neighbor’s child, who is about the same age is doing. There may be concerns about your baby sitting up or beginning to verbalize words and sounds.

While it’s true that children develop differently, at their own pace, and that the range of what’s “normal” development is quite broad, it’s hard not to worry and wonder. If you think that your child is not developing at the same pace or in the same way as most children his or her age, it is often a good idea to talk to your child’s pediatrician. Explain your concerns. Tell the doctor what you have observed with your child. The doctor or other professionals might ask you some questions they may also talk and play with your child to see how he or she plays, learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.

You can also get in touch with your community’s lead agency for birth-to-three services, and ask for an evaluation to see if there are possible delays. Based on referrals from the Doctor and the evaluation provided by the early intervention team, your child may be eligible for early intervention services, which will be developed with you and will address your child’s special needs.

Screening is a simple process that can identify infants and young children who may be at risk for health, developmental, or social/emotional problems. It identifies children who may need a health assessment, diagnostic assessment, or educational evaluation. “Screening” means using a standardized instrument. This could include a parent questionnaire, observational process, or other form of measurement that has been validated by research to learn more about the child’s development. Using a standardized instrument is much more effective for identifying real concerns or delays than just using professional judgment or informal questions about the child’s development.

The screening process provides an opportunity for young children and their families to access a wide variety of services and early childhood programs. It also supports the parents’ understanding of their child’s health, development, and learning.

The developmental screening and evaluations can lead to the involvement of a Family Resource Coordinator who will walk with the family through those first three years. They do a family needs assessment, if the family wishes to have one done. This helps identify areas the needs and priorities of the child’s family. Family-directed services are meant to help family members understand the special needs of their child and how to enhance the child’s development.

The need to provide early intervention is significant. Many children with developmental delays are not being identified as early as possible. This can result in these children waiting to get the help they need to do well in social and educational settings until they are in a school or pre-school setting. Research has shown that in nearly one in six Washington kids has a developmental delay, but only 30% of these children are identified before starting kindergarten, when early support services are most effective. Additionally, research has also identified that in the United States, about 13% of children 3 to 17 years of age have developmental or behavioral disabilities. These can include autism, intellectual disabilities, and attention-deficit/hyperactivity disorder. Additionally, there are children who have delays in language, social skills, or other areas that affect school readiness. This same research found that many children with developmental disabilities weren’t identified before age 10. These types of delays have significant implications since by that age there are significant delays that might have been addressed earlier and provided opportunities for services and support that was missed.

Because of the rapid growth in a child’s first three years of life, early support and monitoring of child development is essential for these children to reach their full academic potential as well as social and personal success. In all cases, kids will experience greater success academically, socially, and personally if delays are caught early and kids and families get the support they need. Free developmental screening using the Ages and Stages Questionnaire-3 screening tool is one of the best ways to get more awareness of what can help your child. In addition to the Ages and Stages survey a terrific tool and support network has been established called “Within Reach”. The “WithinReach” website is committed to supporting optimal child development of all Washington families. Through the “WithinReach” Family Health Hotlineand Child Development program, families can access free developmental screening, connections to early learning and family support and referrals to early intervention for developmental delays.

If you would like a free developmental screening for your child or have concerns about your child’s development, it is as easy as calling their Family Health Hotline (800) 322-2588 or visiting their website at www.ParentHelp123.org.

Remember that as important as Developmental screening is as a part of early intervention, can go also be important in assuring that the needs of children of older ages also find success and resources. Developmental screening for older youth can include areas of the individual’s development in mental health, social and emotional needs, and communication needs, just to name a few. Developmental screening will help assure that the needs of the individual whether an infant or an older child, can be met, and how those needs can be met. As parents and family members we have a responsibility to help our children thrive and developmental screening can help us know which path to follow to make that happen.

Resources for this article:

http://www.cdc.gov/ncbddd/childdevelopment/screening.html

http://www.parentcenterhub.org/repository/ei-overview/

http://www.health.state.mn.us/divs/cfh/topic/devscreening/screening.cfm

http://agesandstages.com/research-results/why-screening-matters/developmental-screening/

http://www.cdc.gov/ncbddd/autism/index.htm

http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/intellectualdisability.pdf

http://www.cdc.gov/ncbddd/autism/index.htm

http://agesandstages.com/

http://www.withinreachwa.org/what-we-do/healthy-families/child-development/

http://www.cdc.gov/ncbddd/childdevelopment/screening.html#references

 

What is a Medical Home?

A medical home is a partnership between you and your child’s doctor that makes sure your child is getting the best possible care.

It is not an actual place or building you can go to. The word home means that you have a “home base” for your child’s health care needs.  The medical home concept has been growing more and more in the last few years and creates a coordination “team” around the medical needs of your child.

The place where you usually take your child for health care can be your child’s medical home.  Medical homes don’t happen right away and don’t always look the same. No matter who provides coordination a medical home provides support for your child and help for you as the parent or guardian in the coordination of care. If you would like to work on creating a medical home for your child often the first place to start is with your child’s primary care physician to see if they are familiar with how to coordinate care around your child. Some families have medical homes built through a specialist’s office, some a primary care pediatrician, and others who are on Medicaid can have that coordination through a managed care patient care specialist.

When choosing a provider to help you create a medical home here are some tips to consider:

  • Their willingness to negotiate and respect your input and decisions
  • That your child’s best interest is at the heart of their care and that the family’s dynamics are taken into consideration when a care plan is put into place
  • Your provider has at least some experience with your child’s condition. The relationship of the provider with your child is the most important element.
  • Open communication so that you and your doctor can make decisions together and that you are recognized as the expert on your own child’s care

It is important that the provider you consider also work well with the other members of your child’s care team and that they are willing to communicate and share information. You and your child’s providers should make decisions together calmly and information should be shared with all members of the team. A willingness to work with supports inside and outside the medical profession is also something to think about. A physician that is willing to work with a school and advocate for the child’s needs in a school environment goes a long way in setting up a strong IEP or 504 education plan.

When working with a provider understand that respect is a two-way street. Working with complex needs can be frustrating and scary and just because someone is a physician doesn’t mean they have all the answers. Asking questions and letting your provider know that you don’t understand their decision or don’t agree with their decision can be done respectfully and can help to build a strong line of communication if it is done with respect. You are the driver of your team so it helps to come from a place of respect.

It also helps to respect the time utilized in appointments as well. Be sure and let the office know ahead of time if you need more time in an appointment and write out your questions and concerns ahead of time. If you have a teenager or young adult start having them write out their questions and needs as well so that they become a part of the team in managing their own care.

I know it seems like a lot of work but there are a great deal of reasons why a medical home is of benefit. Some of these reasons include:

  • Help in the early identification of special health care needs
  • Provides ongoing primary care
  • Ongoing coordination with a broad range of other specialty services
  • Your child’s doctor can help you find more medical services for your child
  • More cost effective
  • Your doctor will get to know your child’s needs better
  • Your child will get better healthcare because you and your doctor have a partnership
  • Information is shared between you and your child’s doctors
  • You and your child’s providers can build a relationship
  • Fewer visits to the emergency room and hospital when problems are found more quickly
  • Lower long-term health care costs

Family can be a constant in many children’s lives. They know the history of the child and they will be there in the future. Bringing a trusted medical provider into that circle to help with the coordination and care of your child frees you, as a family, to look beyond the need to juggle the many complex issues of caring for a child with special healthcare needs. A medical home can spread the burden of coordination and decision making between many hands and can keep everyone on the same page. This alone can be worth the extra work that you may face in beginning.

There are some great web resources around establishing a medical home both at national and state sites and you can access them below.

American Academy of Pediatrics

Bright Futures

Washington State Medical Home

Medical Homes Checklist

  1. You are valued and acknowledged as the expert on your child.
  2. You are the central member of your child’s health care team.
  3. There is respect and trust between you and your child’s Doctor.
  4. Your culture and religion are valued.
  5. Your doctor shows effort and interest in learning about your child’s healthcare and other needs
  6. Your child receives his or her shots, well child visits and urgent care (when needed).
  7. You receive help and support when finding specialty care and community services.
  8. Your child’s doctor provides helpful information to other people involved in your child’s healthcare and helps you manage your child’s care.
  9. If your child has special healthcare need you feel supported.
  10. You are given helpful information to help you learn about your child’s health care concerns
  11. Your doctor helps you understand the choices for your child’s treatment.

Depression and the Autism Spectrum

It is a common misconception that people who have Asperger’s or Autism do not get depression.

In fact this is more common than you think!

Suicidal thoughts are ten times more likely in people with Asperger’s or in the Autism Spectrum.  Survey data was used on 256 men and 118 women who were diagnosed:

66% reported suicidal thoughts

35% reported plans or attempts at suicide

31% reported depression

Depression can be caused by:

Social troubles because you do not seem to fit in

Guilt or regret over past actions/outbursts/meltdowns

Overwhelming feelings and thoughts

Anxiety and Panic Attacks

Miscommunications / Misunderstandings

Fatigue or Tiredness due either to the condition or to medications taken for the condition (e.g.: Ritalin)

Here are some comments people with Asperger’s have made:
(Comments have been made anonymously)

“I have been diagnosed with Asperger’s syndrome and depression.
My repeated obsessive thoughts turn into that sadness and also when someone gets frustrated with me like my parents. I don’t even know how I feel sometimes. When I can’t learn from my mistakes as fast as everyone else. I feel hopeless because it’s how I’m made to make mistakes over and over without ending.”

“I understand. Repeating the same mistake over and over…I would always forget to leave my coat in my locker at school (because of some rule) and 4 days out of 5 I would forget it. Consistently. And my repetitive obsessive thoughts also turn into sadness, but for me this occurs irrespectively of being yelled at.”

“I have Asperger’s and am high functioning to a degree. I also suffer from depression and anxiety which a lot stems to the fact my circle of friends has drastically dropped since my teenage years, I’m nearly 23 and I don’t go out like most people my age do. Mainly because I socially isolate myself. I find situations arise when I go out, for example…a club I used to go to has very loud bands on Friday nights, I can’t hear my thoughts it screws with my head. It depresses me because when I was younger I had loads of friends, now I’m a social outcast who feels nothing but bitterness and anger towards a lot of society. Al lot of my friends don’t want nothing to do with me anymore. Best friends have come and gone and now I feel alone. I live alone which doesn’t help and rely on Xbox live to chat to people. I just wish sometimes I wouldn’t come out with weird stuff. It freaks me out as well as it does to other people.”

The first step to helping, is by recognizing the signs:

A suicide attempt is rarely made all of a sudden.  It is most common for individuals to shift between the stages on a continuum which range from thinking about suicide to committing suicide.

The stages can go back and forth and are not limited to:

Planning – for example, giving away possessions that were thought of as special to them.

Organizing means – a fascination with a certain weapon that they were not interested in before, for example.

Suicide attempt

Some may start in self harming behavior which can lead to death while the goal is not to actually die.  This is because these individuals may not have actually thought of the consequences and finality of suicide.

Pay attention to:

Statements like “I would be better if I just died”

Threatening to commit suicide

If they are more withdrawn or depressed: not participating in their routine activities, they avoid communicating even more than usual.

Recognizing the signs is even harder when some people with Autism or Asperger’s cannot communicate the conventional way.

Here is how you can help someone who is depressed

People who consider suicide mostly need to know that others do care:

Even if you don’t talk, just being there helps

Let them know that most people think about suicide at one time or another, and thinking about suicide does not mean that things can’t get better.

Listen to what they are saying about themselves and their life

Avoid saying things like “you should be grateful to be alive!” or “You will be fine”

Tell them that you will always be willing to talk and there are others who care

Inspire them to make new friends or contact old friends or even call the Suicide Prevention Lifeline. https://www.suicidepreventionlifeline.org/– 1-800-273-8255.  The Lifeline offers online chat, which is a good option when individuals are non-verbal or when social anxiety is high.

If you see that there is an imminent danger of the individual to commit suicide:

If it is an emergency, call 911

Contact outside help or make sure they contact their Doctor

Monitor their temperament and establish a follow up plan when there are changes – the plan can include calling the Doctor, making sure they call the National Suicide Prevention Lifeline – https://www.suicidepreventionlifeline.org/ or call 1-800-273-8255.

Make sure to remove any means that can facilitate suicide – prescription drugs, weapons, etc.

Most of all let them know that there are always people who are ready to help them.  It is important for them to know that it’s ok to ask for help and let either family members, friends or professionals how they feel.

References:

Synapse, Reconnecting Lives, Fact Sheets:  Depression, Suicide Risk and Autism
Retrieved from – http://www.autism-help.org/family-suicide-depression-autism.htm
Collingwood, J. Suicidal Thoughts 10 Times More Likely in Adults with Asperger’s.
Retrieved from http://psychcentral.com/news/2014/10/13/suicidal-thoughts-10-times-more-likely-in-
adults-with-aspergers/76016.html
Cassidy, S. et al. Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome
Attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 25 June 2014 doi:
10.1016/S2215-0366(14)70248-2
Raja, M. Suicide risk in adults with Asperger’s syndrome. The Lancet Psychiatry, 25 June 2014
Doi:10.1016/S2215-0366(14)70257-3

 

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

Tactic Rationale Example
Non-Contingent Reinforcement/Planned Attention Your 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 Written Your 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 Objects Your 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 school All 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 Chores A 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 System Your 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.