To call or not to call

I have a friend who has a daughter with CP and ID and a son with Autism. He is divorced and does not see his kids very often because they live half way across the country. He was separated from his kids when they were 8 or 9 years old.  He has a couple other kids without disabilities as well.

He has planned week or two visits to his kids twice a year since the divorce.  The kids are all grown now, in their 20's and he has stayed connected to all the kids all this time through phone calls, texts etc., but it has been harder to stay connected with the 2 with disabilities because he has to depend on his ex to make that connection work. He sometimes feels that the kids are not super interested in his calls because his ex is always involved. He does not really get to have a conversation with them but rather it is like having a conversation with the ex as she relays what she thinks he wants to hear.  When he sees the kids they seem happy to see him but they are also anxious for him to leave so they can get back to their routines. He wonders if his kids would be better off if he just stopped calling and visiting. 

This was difficult to hear and to consider.  I could not imagine not texting regularly with my son and talking on the phone once a week but my situation is so different from his.  My son is in control of himself and his decisions.  He does not need to have a go-between to communicate with me. I know my conversations with my son are genuine and truly with him.  My friend, on the other hand, does not.  He does not really know if his kids are truly happy to hear from him.  He cannot be sure if they would miss his calls or not. He says he feels guilty for not calling more often but also guilty for calling and disrupting their routine. I cannot imagine what that must be like.  To want to do what is best for your children but not really having a real honest way of knowing what that may be. 

I can understand his desire to stop calling them but at the same time I cannot.  He has never thought about not calling or texting his kids without disabilities so why is it even a consideration to not call or text those with disabilities? I think it really comes down to the level of independence and control his kids have over their life decisions.  I know that his daughter (we will call her Grace) has very little control over her life. Decisions are made for her and even when she is given choices they are very limited.  She has the ability to make choices from a wider array but is not often given the opportunity to do so.  There is some degree of learned helplessness and codependence between her and her mother, her primary care giver.  Grace's mother has never offered to set up the phone for her and leave her alone for the call. Grace can communicate verbally so she CAN interact on a call. She has also never initiated a call between Grace and her dad. At one point she even asked my friend if he would consider giving up custody of Grace so her mom's new husband could file for custody. This did not happen by the way. 

This situation reinforces for me the importance of individuals with disabilities being taught early on how to advocate for themselves, how to be self determined and how to make supported decisions.  When children with disabilities are not given choices or any degree of control of their own lives, they can easily become passive and allow others to make all their decisions for them and often to do everything for them--or actually do everything to them. This is learned helplessness.  The more someone else makes their decisions and does things for them, the less self determined and independent they become, allowing others to have all the control. This becomes the way things are, the norm, the expectation. 

This also takes away quality of life and ownership of life from the individual with a disability.  I think of the expression, "you don't know what you don't know." If you never know how to make your own decisions or care for yourself to any extent, you will never know the joy of it. if you never know the joy of it, you cannot miss it. If all you ever know is being passive and allowing others to do and choose for you, you cannot know how empowering it is to make your choices, to choose your own pathway, to accomplish something independently, or to know your own potential outcomes. You cannot know what it is like to make a bad choice and thus, the fulfillment of setting it right, and learning from that mistake. 

I really do not think most caregivers are out to reduce the quality of life of their charges (though certainly some may). It can be quite overwhelming and exhausting to care for someone with disabilities. It is even more of a challenge when the caregiver is attempting to afford the individual with a disability the chance to accomplish tasks on their own.  They may need support and instruction and prompting. This takes time and energy. It is not uncommon to think it would just be easier and quicker to do things for them rather than taking the time and energy to support them to complete the tasks on their own thus aiding them in being more self determined in the future. It is critical to begin teaching individuals with disabilities how to make choices, how to advocate, how to complete daily living tasks, how to ask for and refuse things. We can never really know for sure what the best options are for individuals with disabilities unless we help them to be able to have a voice for themselves. If Grace had been taught this early on, maybe my friend would have a better handle on her wants and needs and he could have more easily and less painfully made a decision about whether to call or not to call.

Students with disabilities: the minority group that we separate and get away with. Why is that?

Least Restrictive Environment, according to IDEA, means that "each public agency must ensure that (i) to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are non-disabled; and (ii) special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily." Each state is held accountable and monitored through Special Education Profile data regarding LRE practices. The expectation is that most students with disabilities will spend at least 80% of their school day in educational settings with their same age and grade level peers without disabilities. 

Consider this information alongside the fact that about 80% of students with disabilities do not have a cognitive disability and only about 1% of students with disabilities have a highly significant cognitive disability. Seems to me it should be pretty easy to be able to educate most students with disabilities in general education classrooms alongside their peers without disabilities, using the same high quality instructional methods and materials. 

On average, across the country, state targets for Special Education Profile Indicator 5a for LRE (students with disabilities spending 80% or more of their day with peers without disabilities) range from 50% to 80%, meaning that the goal is to have 50-80% of students with disabilities spending 80% or more of their day with their peers without disabilities. Most state targets are around 60% and most states are hovering right around their targets. Each state is allowed to set their own targets as long as they are above baseline and show growth over time. When districts do not meet targets, they are informed and are expected to take action to rectify the issue. 

Again if 80% of students with disabilities do not have cognitive disabilities, they should be able to access and make progress in the general curriculum. They should be spending the majority of their day in the general education setting, and targets should be far higher than 60%. Seems to me targets should be, AT A MINIMUM 80%. But unfortunately, much like every other minority demographic, decisions are made for students with disabilities by those without disabilities, those in the majority--those in the privileged norm group. 

When students with disabilities are given access to an educational setting that includes peers without disabilities, it is often seen as the student with a disability being allowed to be in that class, to have that access.  It is the prerogative of someone else to  grant that access through the lens of privilege as though some students need to earn the privilege of access to general education, to high quality instruction from content experts, using high quality instructional materials and methods.  And it is almost always conditional as well.  They can access this class if...they behave, they make progress, they do not take time and attention away from the others. Education is supposed to be for ALL learners, not most, but ALL. And ALL learners have the right to access the same educational environment. 

When we decide to educate all types of learners together in the same setting, all the students will benefit. We often think that the kids with different or complex educational needs will take something away from those children who are progressing as expected or who are accelerated. It can be viewed as unfair or putting the students without disabilities at a disadvantage but in reality, there is either no difference in outcomes or children with and without disabilities benefit.  In a  meta-analysis of inclusive education research by Kalambouka, Farrell, and Dyson’s in 2007, it was found that 81% of the reported outcomes showed including students with disabilities resulted in either positive or neutral effects for students without disabilities. Other studies indicate that the outcomes are almost always positive for students with disabilities. Students without disabilities made significantly greater progress in reading and math when served in inclusive settings. (Cole, Waldron, & Majd, 2004; Cosier, Causton-Theoharis, & Theoharis, 2013; Dessemontet, Bless, & Morin, 2012)) 

LRE is based in principles of equity. Equity does not mean that all kids get the same thing. Neither does it say that all kids will reach the same outcome.  What is does say is that all kids will be given access to the same quality instruction, educators, materials, resources and environments AND whatever additional supports and services they might need to fully have that access--access to the general education curriculum. Yes, least restrictive can mean different things for different individuals but I would argue that the restrictiveness of an environment can be manipulated if barriers are identified and solutions are found by collaborative teams.  Any environment can be made less restrictive. It may take time and effort and energy and innovation and ingenuity but it can be done. 

Including the Whole Family When Planning for Individuals with Disabilities

Parents are essential members of planning teams for individuals with disabilities.  In fact, federal law, the Individuals with Disabilities Education Act (IDEA) mandates parent participation when planning for children with disabilities in school settings. Schools must ensure that parents are invited to all planning meetings and that these meetings are arranged at a mutually agreed upon time and place to increase the probability that they will be able to attend.  If parents cannot attend, the schools must be sure to seek their input and keep them informed of all decisions and changes to their child’s programming. Schools are required to involve parents but as a sibling to my brother with a disability, I also think it is important to include other family members as well, whenever possible.

Parents may not realize that they can invite anyone they choose to planning meetings, including their other children.  I often attended my brother, Dave’s, Individualized Education Plan (IEP) meetings.  Siblings can often offer a different perspective and additional information when creating educational plans for their brothers and sisters.  The majority of siblings often spend more time with one another than with anyone else. Across the lifespan, siblings influence each other in many ways that people are often not aware of.  They can be the most foundational element of a child’s social life. While siblings can be a source of annoyance to one another, they are also each other’s first playmate, observer, teacher, and supporter.  They serve as practice partners with social interactions and as emotional and behavioral models as well. 

    Sibling relationships are often the longest-lasting and strongest relationships in a person’s life. Siblings know each other very well and possibly in a different light than either parents or educators. While parents may be more protective and sometimes enabling of their child with a disability, siblings can be tougher and push them toward being more independent.  Dave has quadriplegic cerebral palsy, uses a wheelchair for mobility and an Augmentative and Alternative Communication device (AAC) for communication.  He has some limitations due to his disability including needing support with all daily living tasks.  Growing up, our parents often believed that Dave would not be capable of completing many of these tasks.  They asked me to assist him before he was even given the chance to try.  I always encouraged him to try things before I stepped in to help him.  Sometimes he struggled and became frustrated but more often than not, he would be able to complete the tasks I put to him, sometimes with support and sometimes not. At various planning meetings for Dave, I was able to share these types of experiences with the team, offering a different perspective than that of our parents.  

    Once individuals with disabilities move on from school and into adult life, the protections of IDEA are no longer available.  There are some protections under the Americans with Disabilities Act (ADA) Section 504, but parents are no longer a mandated part of any planning teams.  Whenever possible individuals with disabilities need to be able to advocate and make decisions for themselves. They may need supported decision-making partners and in fewer instances, guardians or powers of attorney (POA).  When there are siblings, families often turn to them to fill these roles. Parents will often have conversations about life in the future for their child with a disability and quite frequently, siblings are an important part of the discussion.  Because siblings are the longest-lasting and strongest relationships in a person’s life, it makes sense.  They will likely be a part of the individual with a disability’s life longer than their parents. 

    Even if siblings do not take on the role of supported decision-making partner, guardian, or POA, they should be included in planning meetings for and with their sibling with a disability. My brother is now a grown man, married and living with his wife in another state but I am still involved in his life.  Fortunately, he is able to make his own decisions, but he will still call me on occasion when he needs to talk through something.  Parents should encourage their children to take an active role in their sibling with a disability’s life.  Not all siblings are comfortable with or understand their brother’s or sister’s disability or what their needs might be.  This can often occur because parents do not want to burden their children without disabilities or make them feel they need to take on any carer responsibilities.  If parents do not explain to their other children about their sibling’s disability it can lead to those children feeling ignored because their parents are paying more attention to their sibling with a disability, but they do not understand why.  With open communication and honesty, this dynamic can shift to one of understanding and acceptance as awareness of the disability increases, and their attitude and disposition can change to one of empathy and care.

    In our family, we all pitched in to help with Dave when needed and we included him in everything we did.  Decisions were made as a family. Our parents never wanted us to feel that we were required to help care for Dave.  They wanted us to be friends with him, to play with him, to include him, to occasionally babysit, but not to be fully responsible for his day-to-day care, though we did participate in some caregiving. This fostered a good relationship between us all. Many siblings experience feelings of guilt and self-blame because either they do not feel that they are not doing enough to care for their sibling or because they are achieving at higher levels and in more arenas than their sibling. They may isolate and keep their feelings to themselves, not believing anyone will really understand. Much of these feelings stem from siblings not wanting to make a challenging situation even more challenging for anyone in the family.

    Often young siblings do not realize that these feelings may stem from having a sibling with a disability.  They may think that everyone feels this way and that they do not need support but as they age, and look back, they often think it would have been good to have someone to talk to about it early on. Parents should talk to their children about their sibling and their disability and what it may mean for the family.  Also, seeking out others with children with disabilities can be helpful for siblings.  Siblings can feel isolated because they have no real network of other siblings with a shared or similar experience. Meeting peers who also have siblings with disabilities can provide much-needed support and community.  Many siblings think it would be great to meet other siblings so as not to feel so alone, and to know there are other siblings out there, with a shared life experience. Siblings can feel alone because most other families they know and encounter do not have an individual with a disability in their mix so they may think they have no one with whom to share their feelings. 

    Social support networks like SibNet (https://www.facebook.com/groups/SibNet/) or the Sibling Leadership Network (https://siblingleadership.org/) can prove to be central in helping siblings understand their own needs and to have their experiences validated.  All too often, siblings keep their feelings inside because they do not want to cause stress or do not think others can relate. They may also be concerned about how their actions might impact the family or their sibling with a disability.  By talking to others with a shared experience, siblings can begin to understand that their feelings are not a direct result of their sibling’s disability but rather due to the lack of support and understanding from others.

    When a child with a disability becomes a member of a family, it is important to talk about it with everyone and to involve their siblings in planning for them. Siblings can offer an alternative perspective about life with a sibling with a disability and can provide valuable insight and information that parents may not be privy to. Also, this helps the siblings to understand their brother’s or sister’s needs and to know that, even if they require a bit more time and attention from the parents, it does not mean that the siblings without disabilities are less important or less deserving of time, attention, and love.