A Beginner's Guide to Autism Spectrum Disorder

Let me start off by saying, this is not meant to be an in depth analysis or explanation of autism or Autism Spectrum Disorder (ASD). In writing this, I hope to provide you with a general overview of the disorder, the diagnostic process including the recent, somewhat controversial, changes in the criteria,  and the additional IEP considerations that accompany such a disability. If you would like more in depth information regarding autism and ASD, check out Autism Speaks or the National Institute of Mental Health.

So, what is autism or ASD? 

Both are general terms used to describe a complex group of brain development disorders usually characterized by a lack of social and communication skills often accompanied by repetitive behaviors and/or limited interests. Symptoms manifest by age three but, if mild, may go undetected until later when learning, social or emotional issues arise. It is called a "spectrum" disorder because there is a great deal of variance in the number and severity of symptoms as well as the skill levels and level of impairment or disability that can be present. The chart to the right, provided by the Center for Disease Control and Prevention, illustrates the range of symptoms that might be present in one individual.

How is Autism defined under Part B of the Individuals with Disabilities Education Act? 

The Code of Federal Regulations states the legal definition of the disability of autism in the following terms:

(1)(i) Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.
(ii) Autism does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in paragraph (c)(4) of this section.
(iii) A child who manifests the characteristics of autism after age three could be identified as having autism if the criteria in paragraph (c)(1)(i) of this section are satisfied. (34 C.F.R. 300.8(c))

So, for a child to be eligible for services as a child with autism under the IDEA, the disability must

• significantly affect communication and social interaction AND 
• have an adverse affect on the child's educational performance.

It is important to note the primary focus of the CFR definition of autism is on communication and social interaction deficits; referring to the repetitive and stereotyped behaviors separately as "Other characteristics often associated with autism." They're not even required to have an adverse affect on educational performance. This may be an important distinction for those evaluated after the implementation of the DSM-V for reasons I will explain below in my discussion of diagnostic criteria.
(For more on general eligibility requirements under the IDEA, see my previous post here.)

How do I know if my child has an Autism Spectrum Disorder?

The latest report from the CDC estimates the number of parent-reported school-aged children diagnosed with ASD to be about 1 in 50. There is no medical test for it. A diagnosis is made by looking at the child's development and behavior. Parents or primary caregivers are often the first to notice unusual behaviors or developmental delays. If you have a young child and not sure what signs you should be looking for, check out the Communication and Symbolic Behavior Scales checklist. Any concerns you have should be reported to the child's pediatrician as soon as possible. According to the CDC, the diagnostic process should involve

• a developmental screening followed by 
• a complete and comprehensive evaluation.

What's involved in a developmental Screening?

A screening looks at whether there have been any delays or concerns raised regarding developmental milestones during the first two years of the child's life. Milestones include skills such as showing joyful expressions by the age of six months or babbling and back and forth gesturing (waving bye-bye) by 12 months. A pediatrician should check for developmental delays during those early years as part of the child's regular well-check visits. The CDC, as well as the American Academy of Pediatrics, recommends pediatricians specifically screen all children for Autism Spectrum Disorder using tools such as the Modified Checklist of Autism in Toddlers (M-CHAT) or the Screening Tool for Autism in Toddlers and Young Children (STAT) at 18 AND 24 months of age to determine if they are at risk.

Here is a Fact Sheet provided by the CDC on Developmental Screenings.
If you would like to take the M-CHAT, Autism Speaks provides parents with an online version here. If the results of such screenings indicate a risk of ASD, a comprehensive evaluation must be completed.

What is involved in a comprehensive evaluation for ASD?

There are several tools available to clinicians for assessing ASDs in young children including, but not limited to:

• Autism Diagnostic Interview or Autism Diagnostic Interview – Revised (ADI/ADI-R), 
• Developmental, Dimensional and Diagnostic Interview (3di), 
• Diagnostic Interview for Social and Communication Disorders (DISCO), 
• Autism Diagnostic Observation Schedule (ADOS) and 
• Gilliam Autism Rating Scale (GARS) 

As with any comprehensive evaluation, no single assessment tool should constitute the sole basis for a diagnosis.

What criteria are used in a comprehensive evaluation for Autism Spectrum Disorder?

Presently, the most popular tool used by clinicians to diagnose ASD is the Diagnostic and Statistical Manual of Mental Health Disorders or DSM published by the American Psychiatric Association. Since its initial publication in 1952, the DSM has been updated several times. In prior versions of the manual, there were several distinct disorders articulated on the autism spectrum including; Autistic Disorder or "classic" autism,  Asperger Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) and Childhood Disintegrative Disorder. However,  in their continuing efforts to increase reliability in diagnosis, the fifth edition of the DSM (aptly called the DSM-V), released in May of 2013 eliminated these subcategories merging them into one general Autism Spectrum Disorder and adding a new and separate Social (Pragmatic) Communication Disorder (SCD).

In addition to the name change, the DSM-V includes some significant changes in the criteria used to diagnose ASD. In prior versions such as the DSM-IV, a diagnosis of an ASD was given if the child exhibited six out of twelve symptoms across three categories;

1. impairment in language/communication, 
2. social impairment and 
3. repetitive behaviors/limited interests.

There was no requirement that children exhibit symptoms in all three categories. In other words, if the child demonstrated four symptoms relating to an impairment in social interaction and two symptoms of a communication deficit but no symptoms of any repetitive behaviors, the child would still have received a diagnosis of an autistic disorder such as PDD-NOS. That is no longer the case.

The DSM-V includes the following significant changes in the diagnostic criteria for Autism Spectrum Disorder:

• combines the first two categories into a single social communication impairment, 
• lowers the required number of symptoms to be exhibited from six to five, 
• requires at least two of the symptoms be in the area of repetitive behaviors/limited interests, 
• requires social communication symptoms be persistent and ongoing while an individual need only have a history of symptoms of repetitive behaviors or limited interests and 
• requires clinicians to include specifics for each individual diagnosed with ASD such as age of onset, severity of impairment, presence of any intellectual or language disability and any co-existing or genetic conditions present.

If a child is found to have social and communication deficits but does not have a history of any repetitive behaviors or restriction in areas of interest, the DSM-V requires s/he be evaluated for the newly added Social (Pragmatic) Communication Disorder.
If you would like to read more about the DSM-V diagnostic criteria for ASD and SCD, check out the information provided by Autism Speaks here.

OK, we have a diagnosis of Autism Spectrum Disorder, what now?

There is no "cure" or set treatment plan for ASD. Since it affects each child differently, treatment and intervention plans must be tailored to meet each child's unique needs. Such plans may include behavioral therapy, medication or both to address the core symptoms. Early intervention with intense behavioral therapy has been shown to improve the learning, social and communication skills in young children with ASD. For more information on available therapy and treatment options click here.

Part C of the Individuals with Disabilities Act applies to infants and children under the age of 3 with disabilities or "at risk" of experiencing substantial developmental delays and requires the provision of early intervention services such as:

(i) family training, counseling, and home visits;
(ii) special instruction;
(iii) speech-language pathology and audiology services, and sign language and cued language services;
(iv) occupational therapy;
(v) physical therapy;
(vi) psychological services;
(vii) service coordination services;
(viii) medical services only for diagnostic or evaluation purposes;
(ix) early identification, screening, and assessment services;
(x) health services necessary to enable the infant or toddler to benefit from the other early intervention services;
(xi) social work services;
(xii) vision services;
(xiii) assistive technology devices and assistive technology services; and
(xiv) transportation and related costs that are necessary to enable an infant or toddler and the infant’s or toddler’s family to receive another service described in this paragraph (20 U.S.C. 1432(4)(E)).

For information on finding early intervention services in your area click here.

Children three years and older should be evaluated for Special Education and Related Services under Part B of the IDEA.

What, if any, strategies should be considered by the team when developing an Individualized Education Plan for a student with ASD? 

As with any other disability, students with ASD should have an IEP tailored to address each child's unique needs taking into account their strengths, parental concerns, evaluation results and academic, developmental and functional deficits. In addition, the IEP team is required to consider certain special factors under 20 U.S.C. 1414(3)(b) including behavior intervention, communication, vision, language and assistive technology needs when developing a child's IEP.

In Texas, these "special factors" have been expanded specifically to address the needs of children with ASD. The ARD committee must consider the following eleven research-based strategies when developing an IEP for a child with Autism Spectrum Disorder:

(1) extended educational programming (for example: extended day and/or extended school year services that consider the duration of programs/settings based on assessment of behavior, social skills, communication, academics, and self-help skills);

(2) daily schedules reflecting minimal unstructured time and active engagement in learning activities (for example: lunch, snack, and recess periods that provide flexibility within routines; adapt to individual skill levels; and assist with schedule changes, such as changes involving substitute teachers and pep rallies);

(3) in-home and community-based training or viable alternatives that assist the student with acquisition of social/behavioral skills (for example: strategies that facilitate maintenance and generalization of such skills from home to school, school to home, home to community, and school to community);

(4) positive behavior support strategies based on relevant information, for example:

(A) antecedent manipulation, replacement behaviors, reinforcement strategies, and data-based decisions; and
(B) a Behavior Intervention Plan developed from a Functional Behavioral Assessment that uses current data related to target behaviors and addresses behavioral programming across home, school, and community-based settings;

(5) beginning at any age, consistent with subsections (g) of this section, futures planning for integrated living, work, community, and educational environments that considers skills necessary to function in current and post-secondary environments;;
(6) parent/family training and support, provided by qualified personnel with experience in Autism Spectrum Disorders (ASD), that, for example;

(A) provides a family with skills necessary for a child to succeed in the home/community setting;
(B) includes information regarding resources (for example: parent support groups, workshops, videos, conferences, and materials designed to increase parent knowledge of specific teaching/management techniques related to the child's curriculum); and
(C) facilitates parental carryover of in-home training (for example: strategies for behavior management and developing structured home environments and/or communication training so that parents are active participants in promoting the continuity of interventions across all settings);

(7) suitable staff-to-student ratio appropriate to identified activities and as needed to achieve social/behavioral progress based on the child's developmental and learning level (acquisition, fluency, maintenance, generalization) that encourages work towards individual independence as determined by, for example:

(A) adaptive behavior evaluation results;
(B) behavioral accommodation needs across settings; and
(C) transitions within the school day;

(8) communication interventions, including language forms and functions that enhance effective communication across settings (for example: augmentative, incidental, and naturalistic teaching);

(9) social skills supports and strategies based on social skills assessment/curriculum and provided across settings (for example: trained peer facilitators (e.g., circle of friends), video modeling, social stories, and role playing);

(10) professional educator/staff support (for example: training provided to personnel who work with the student to assure the correct implementation of techniques and strategies described in the IEP); and

(11) teaching strategies based on peer reviewed, research-based practices for students with ASD (for example: those associated with discrete-trial training, visual supports, applied behavior analysis, structured learning, augmentative communication, or social skills training) (19 TAC 89.1055(e)).

Additionally, if the ARD committee determines it unnecessary to implement any of the listed strategies, the IEP must include a statement to that effect and the basis upon which the determination was made.  To see if your State requires any special considerations for children with ASD, check your State's Administrative Code or contact the State Board of Education.

What does the DSM-V mean for children already receiving Special Education and Related Services based on a prior diagnosis of Asperger Syndrome or PDD-NOS?

It should mean nothing. As I stated earlier, the DSM is only one tool and should not be the sole basis for diagnosis or exclusion of Autism Spectrum Disorder. In addition, the DSM-V applies to subsequent diagnoses only.  The Work Group responsible for this portion of the DSM-V stated their intention in making these changes was to more accurately reflect the variable nature of autism not to exclude groups of individuals from the diagnosis. They predicted very little effect on the prevalence of, or number of people diagnosed with ASD. In fact, the DSM-V specifically states anyone with a "well-established" DSM-IV diagnosis of Asperger Syndrome or PDD-NOS should be given the diagnosis of Autism Spectrum Disorder.

Can a re-evaluation for eligibility be required on the basis of the new DSM-V diagnostic criteria?

No. There must be a valid clinical or legal basis for requiring any re-evaluation for services under the IDEA. If a re-evaluation is necessary for clinical or legal reasons, the DSM-V is only one of several factors which are to be considered.

Organizations like Autism Speaks and the Organization for Autism Research continue to fund research projects focused on causes, effective treatments and hopefully, one day, a cure for autism spectrum disorder. In the meantime, there are many resources available on their websites to families looking for information, help and support.

Aligning the STAARS

Yep, that's right. I am talking about everybody's favorite topic: Statewide assessments. Here in Texas, the most recent incarnation is the STAAR or State of Texas Assessment of Academic Readiness. I do not want to debate the pros and cons of standardized testing but I do want to address some questions and concerns with regard to their implications for students with disabilities.

What is the purpose of having state and/or district wide assessments?

These assessments serve several functions including:

• measuring individual student achievement using grade-level performance standards set by the State,
• providing information in compliance with Federal laws and regulations such as the Elementary and Secondary Education Act and NCLB, and
• pinpointing the need for program improvement and accountability at the school, district and State level.

How successful they are in serving those functions is, of course, debatable.

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Why must children with disabilities be included in these assessments? 

No Child Left Behind, Section 504 and the IDEA require the inclusion of children with disabilities in all State and district-wide assessments.  The reasoning behind the requirement is best summed up by the US Office of Special Education Programs:

Too often in the past, students with disabilities were excluded from assessments and accountability systems, and the consequence was that they did not receive the academic attention they deserved. Access and exposure to the general curriculum for students with disabilities often did not occur, and there was no system wide measure to indicate whether or what they were learning. These regulations are designed to ensure that schools are held accountable for the educational progress of students with the most significant cognitive disabilities, just as schools are held accountable for the educational results of all other students with disabilities and students without disabilities. (http://www.osepideasthatwork.org/parentkit/AltAssessFAQ.asp)

How are children with disabilities included in Statewide assessments?

There are five options available to States for assessment of children with disabilities. They do not have to implement all five but the options available must enable the assessment of all children with disabilities. The options are:

1. General Grade-Level Assessment-An assessment of academic achievement developed in alignment with grade level content standards as defined by each State.

2. General Grade-Level Assessment with Accommodations-This is the same assessment but given with "appropriate accommodations" which generally include accommodations in:

• how the assessment is presented to the child,

• how the child's responses are recorded,

• where and under what conditions the child is assessed, i.e. separate room with no distractions and

• when and for how long the child is to be assessed.

Each State has its own rules on what accommodations are considered "appropriate." To find out what accommodations are permissible in your State click here.

3. Alternate Assessment Based on Grade-Level Academic Achievement Standards-this would involve situations where a child working on grade level cannot take the standard assessment even with appropriate accommodations for reasons unrelated to assessment content such as a severe physical disability.

4. Alternate Assessment Based on Modified Academic Achievement Standards (AA-MAS)-This option is for students with disabilities who are working on grade-level content that is covered on the general assessment but whose disabilities may result in their needing more time to master the content. These assessments measure a student's mastery of grade-level content, but are less difficult than grade-level achievement standards. Many states that currently offer this option are phasing it out including Texas. The STAAR Modified will no longer be offered beginning with the 2014-15 school year.

5. Alternate Assessment Based on Alternate Academic Achievement Standards (AA-AAS)-This assessment, while still aligned to grade level content, applies alternative (lower) achievement standards to determine proficiency (here in Texas this would be STAAR-Alternate). In defining alternate achievement standards States are required to use "a documented and validated standard-setting process reflecting an appropriate high expectation that will yield increased achievement" (National Center on Educational Outcomes). This option is intended only for children with the most severe intellectual disabilities. Typically, these are children who

• require substantial modifications, adaptations, or supports to meaningfully access the grade-level content, 
• require intensive individualized instruction, and 
• are unlikely to attain grade-level achievement standards, even with the very best instruction.

To find out which assessment options your state offers and the criteria necessary for each Click Here.

Who decides which assessment is right for my child with a disability?

This is a decision to be made on an individual basis by the child's IEP team (which includes parents) and reviewed annually. When making this decision, there are several factors to keep in mind:

• Deliberations should begin with the assumption the child will take the regular general assessments and work from there. IDEA requires the participation of children with disabilities in the general education curriculum to the fullest extent possible, including State and district-wide assessments. 
• If the IEP team determines a child requires appropriate testing accommodations, they must be included in the child's IEP. 
• Alternative Assessments, whether Modified or Alternative Achievement Standards, cannot be considered by the IEP team unless all eligibility criteria established by the State for participation in that Alternative Assessment option have been met. To review your State's participation criteria, see the link above.
• If a child is not taking the general assessment, the IEP must include a statement as to why s/he is to be excluded and why the alternative assessment chosen is appropriate (20 U.S.C. 1414(d)(1)(A)(VI)). 
• Be aware of your State's diploma (not graduation) requirements. Participation in Alternative Assessments may result in your child "graduating" with a Completion Certificate or IEP Diploma rather than a regular High School Diploma. (Please note, No Child Left Behind specifically requires States to ensure students taking assessments with Modified achievement standards are not precluded from attempting to meet the requirements for the regular diploma).
  

Is there a limit to the number of students a State or district can assess using modified or alternative achievement standards?

No. While there are limits to the number of proficient or advanced scores on Alternative Assessments which may be included as proficient for purposes of meeting the Adequate Yearly Progress (AYP) requirements of No Child Left Behind (not to exceed 2% of all students assessed for AA-MAS &1% for AA-AAS), there is no limit placed on the number of students taking alternative assessments.\

Is your school held accountable?

Why should I care about this?

Regardless of your opinion on standardized testing, if you are a parent of a child with a disability, State and district wide assessments are a valuable tool in measuring your child's academic progress and holding the school accountable for providing the Free Appropriate Public Education to which s/he is entitled.

If your child does not meet the State criteria for Alternative Assessments, and yet is not meeting grade level academic achievement standards even with appropriate accommodations, this must be addressed in the IEP whether it be requesting further evaluation or adding to/reviewing services and/or supports the child receives.

If your child has a significant cognitive disability and qualifies to take an Alternative Assessment, be sure this is properly documented in the IEP. In Texas, the ARD committee (including parents) determine which of three complexity levels in the STAAR Alternate will be used to assess the child. The chosen level must be appropriately challenging for the child in order to accurately reflect increased achievement. If your child is unsuccessful in meeting the chosen level standards, again, this should be addressed in the IEP.

Assessments shouldn't have to be stressful for children with disabilities. If they are assessed and accommodated appropriately, it should be an opportunity for them to shine.

Planning for the Future: The Importance of Transition Services

My children just started high school. It has been an eye opening experience for all of us. Remember when you were in high school and your long term goals consisted of graduating and having a date for prom? Well, let me tell you, times have certainly changed.

In the recent push to make high schoolers more "college ready," many middle schools have begun requiring 8th grade students to plan out their entire high school curriculum. More and more high schools are instituting academies within the school, each with courses designed to prepare students for different career paths from the STEM program (Science, Technology, Engineering and Mathematics) to visual and performing arts. Students are expected to choose an academy by the end of their freshman year.

Children with disabilities and their families must similarly make a plan for the future. Will that future include college? Vocational training? Finding employment? What about living arrangements? Will your child be able to live independently or will s/he need assistance? What about transportation needs? Personal finance? To help give you a better idea of things you should be thinking about, check out this example of a Parent Transition Survey.

One of the primary goals of the IDEA is to enable students with disabilities "to lead productive and independent adult lives, to the maximum extent possible" (20 U.S.C. 1400((c)(5)(A)(ii)).  To that end, transition goals and services are a crucial part of any Individualized Education Program as they prepare students for life after high school. The legal definition of "transition services" found in the Code of Federal Regulations Section 300.43 states:

(a) Transition services means a coordinated set of activities for a child with a disability that(1) Is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child's movement from school to post-school activities, including 

• postsecondary education, 
• vocational education, 
• integrated employment (including supported employment), 
• continuing and adult education, 
• adult services, 
• independent living, or 
• community participation; 

(2) Is based on the individual child's needs, taking into account the child's strengths, preferences, and interests; and includes—(i) Instruction;(ii) Related services;(iii) Community experiences;(iv) The development of employment and other post-school adult living objectives; and(v) If appropriate, acquisition of daily living skills and provision of a functional vocational evaluation. (34 C.F.R. 300.43).

So, paragraph (a)!) lists the general goals to be considered and paragraph (a)(2) lists the general types of services to be provided. Beginning no later than age 14, the IEP must include more specific transitional goals set by and on behalf of the student as well as the services necessary to assist the student in achieving those goals. The student must be included to the fullest extent possible in any IEP team discussions relating to postsecondary transition.  The IDEA requires these transition goals and services to be already in effect when the child reaches the age of 16 and updated annually thereafter (20 U.S.C. 1414(d)(1)(A)(i)(VIII).

If you're unsure what postsecondary goals are appropriate for your child, transition assessments are a great place to start. They can be formal or informal and cover four main areas:

1. Educational Assessments focus on academic and cognitive abilities and can also aid in identifying specific learning disabilities. 
2. Vocational Assessments identify career interests and job skills including occupation-specific skill certifications. 
3. Psychological Assessments target behavioral, emotional and social skills. 
4. Medical Assessments deal with physical and functional abilities such as vision and hearing.

You can find more in depth information and examples of the different types of transition assessments here.

Depending on the goals set, additional school personnel and/or representatives from outside service agencies who will charged with paying for or providing transition services must be invited to attend future IEP meetings (20 U.S.C. 1412(a)(12)). For example, if the goal is postsecondary education, the school's college admissions counselor should attend. If the goal is to live independently then an extension services agent should be invited. For a list of other possible service providers to be included, click here.

There is a lot to think about in transition planning and it can be scary for parents as well as children; but there is plenty of information and assistance out there. I have included links to some particularly helpful sites below. You can also talk to your school guidance counselor, your child's doctor or an advocate. The more prepared your child is when they leave high school, the better his/her chances of making a successful transition to adulthood.

Transition Resources

National Dissemination Center for Children with Disabilities Transition to Adulthood
Association on Higher Education and Disability http://www.ahead.org/
The Council for Exceptional Children Division on Career Development and Transition

Wake Up Call!

A news item in the Huffington Post was brought to my attention a few days ago that just breaks my heart. A mother in Michigan was arrested recently for attempting to kill herself and her 14 year old daughter Isabelle who is autistic. The article talks briefly about the family's most recent struggles with an aggressive, sometimes violent, child, a promising but prohibitively expensive treatment program, and battles with insurance companies and school personnel painting a picture of a defeated and desperate woman. In her blog, "The Status Woe", Kelli Stapleton wrote about her daughter. Her posts chronicle many of the ups and downs, the small victories and disheartening setbacks that seem to go hand in hand with raising a special needs child. In her stories there is hope and despair, joy and sorrow, pride and guilt. It is clear, at least to me, she loves Isabelle. While I will never understand or condone her actions in trying to kill her own child, I would be lying if I said I couldn't identify with the emotional roller coaster depicted in her blog entries.

Being a parent is not easy. Being a parent of a child or children with special needs is hard. For those of you with typically developing children, let me try to explain a little what I mean. Think back to when you had infants and toddlers, maybe you still do. They demand your focus and attention every waking moment they are with you. You are constantly running after them, making sure they are fed, cleaned, clothed, healthy, safe, engaged, socialized and overall, happy. As kids get older, things change. As parents, you take a step back as they take on more and more of those responsibilities themselves. You still need to supervise of course but it is done from more of a distance the older they get until they are grown and on their own.

But what if things didn't change? What if stepping back and letting your kids do for themselves was not an option? That's what it's like when your kids have special needs. It doesn't matter if they're 5, 10 or 15 or even 20! You're still running around after them making sure they're eating, bathing, brushing their teeth, properly dressed, healthy, safe, engaged, socialized and, hopefully, happy. When they're in school, you are worrying about whether their needs are being met, wondering if you're going to get a negative report or the dreaded call from administrators that there's been "an incident". When they succeed, you feel as if your heart will burst with pride. When they fall, your heart breaks for them. Living with this stress every day, we may not realize the toll it takes on us both physically and emotionally.

There are other challenges too. Having special needs children can be very isolating. Friendships are just as hard for us as they are for our kids both in the making and maintaining. It can be hard to make friends with parents of typically developing kids either because they can't relate to our situation or because many times we feel they are judging us or our kids, and sometimes maybe they are. The friendships we do have can be difficult to maintain if we don't feel we can make time for them.

We are all susceptible to dark days. I can tell you I have had a few. There have been times I felt so alone, defeated, like the whole world was against me and my kids. I felt I was failing them. Other days I have resented them. I felt sorry for myself and my situation. This would inevitably lead to feelings of overwhelming guilt and self-loathing.  Then there are the angry days where I just want to strangle someone like an ignorant teacher, an insensitive administrator, a bully at school.....and his/her friends who stand around and either egg him/her on or do nothing.....and his/her parents!!

Wait, what was I saying? Oh yeah.

The simple fact is many of us spend so much time meeting the needs of our children, we are constantly neglecting our own needs. Let this tragic incident be a wake up call. We need to stop. We have to take care of our own physical and emotional well-being. If we sacrifice ourselves in the process of caring for our children, everyone we care about, including those children, will eventually pay the price. While I think I can safely say that only a very small percentage of parents would ever consider harming their children, there are other, more common dangers to consider. Things like clinical depression, increased risk of heart problems or stroke, separation and/or divorce just to name a few.

What can we do?

• We must take care of ourselves by making healthy choices, at least once in a while. A scone and mocha from Starbucks is NOT a healthy breakfast (I know, I was surprised too!).
• We must not neglect our health. Keep up with yearly exams. You're no good to anyone if you're sick. 
  
• We must not neglect our other relationships like our spouses and our typically developing children. Try scheduling "date nights" with your spouse AND each of your other children. It doesn't have to cost any money. It's about the time and individual attention.
  
• We must take a little time out every day for ourselves. It's OK to be a little selfish. Indulge in a favorite hobby. Read a book. Have lunch with a friend. Go see a movie.
• We must, at least once a year, get away; preferably with your spouse, but with girlfriends, a church group or extended family is OK too. If you have no one to care for your special needs kids, check out your local support groups. Some may have weekend you-take-care-of-mine-and-I'll-take-care-of-yours groups or weekend camps/services they can recommend.

Taking care of ourselves and our needs is one of the most important things we can do for our special kids. The healthier we are, the better we are able to care for them.

Plus, we're teaching healthy habits too. Bonus!!

Inclusion: The Pointless Debate

Inclusion. The dictionary defines it simply as "the act of including, the state of being included" www.merriam-webster.com/dictionary/inclusion‎
It seems like a harmless enough idea. "All for one and one for all," "We're all in this together." It's nice to be included.

Yet, use the term in relation to Special Education and you may find yourself in the midst of a very heated debate. In this context, inclusion refers to the education of a student who receives special education services in the general education classroom. It can be for all or part of the school day. 

There are valid and well-supported arguments to be made both for and against inclusion in general. They seem to revolve around four central issues as they relate to ALL students, not just those with disabilities. They are:

• academic benefit,
• nonacademic benefit,
• classroom management and
• financial cost.

Do students with disabilities learn better academically in an inclusive classroom alongside typically developing peers? 
Does the presence of students with disabilities adversely affect the typically developing student's ability to learn? 
Does being in a regular classroom subject children with disabilities to bullying and ridicule? 
Does it help children in their social and emotional development to be in a more inclusive environment? 
Can a teacher be an effective educator in a classroom which includes students with disabilities?  

As I said, there are valid points to be made for and against inclusion in general. And therein lies the problem. Inclusion is not something that should be considered in general terms. Rather, as with everything else in Special Education, the nature and extent of inclusion in the general education classroom must be determined on an individual basis by the student's IEP team.  

The term "inclusion" isn't even used in the Federal statutes; nor is the term officially defined by the US Department of Education. It is an instructional model which, like mainstreaming and integration, developed in response to the IDEA requirement that students with disabilities be educated in the Least Restrictive Environment.  To be in compliance, Section 1412(a)(5) provides that States must ensure:

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 not disabled.

 And;

Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. (20 U.S.C. § 1412(a)(5)

So, while Federal law does require disabled students to be educated with their non-disabled peers as much as practicable, or "to the maximum extent appropriate," it also acknowledges that 100% inclusion in the regular classroom may not always be the best way to meet a child's specific educational needs. 

Unfortunately, as with most laws, there are always going to be examples of misinterpretation, misapplication and outright disregard to help fuel the debate. An inappropriate or unsupported placement in the general education classroom can result in a poor learning environment for everyone. On the other hand, the unnecessary segregation of a student whose needs can adequately be met in a general education setting can have devastating consequences for the child. 

In reading the public comments to different news articles and blog entries on the inclusion debate, I was startled by the pervasive misconception as to the nature and extent of the disabilities of students receiving special education services under the IDEA.  Again, there is this tendency to over generalize, using only students with the most severe cognitive disabilities as the example. In order to put things in perspective, I offer the following "general" information pulled from the most recent data provided by the National Center for Education Statistics:

• 13% of all students receive Special Education services 
  
• Of that 13%, 4.9% are students with a specific learning disability such as dyslexia and other information processing disorders.
• 2.9% suffer from speech or language impairments such as stuttering which inhibit their ability to communicate effectively.
• 1.4% fall under "other health impairment" which includes ADHD.
• 1% suffer from either an orthopedic, visual or hearing impairment or a developmental delay.
  
• 0.8% are classified with an emotional disturbance which includes anxiety disorders, OCD and eating disorders as well as bipolar and conduct disorders
• 0.8% fall somewhere on the autism spectrum
• A little over 1% are categorized as having an intellectual disability, a traumatic brain injury or multiple disabilities

U.S. Department of Education, National Center for Education Statistics (2012). Digest of Education Statistics, 2011 (NCES 2012-001), Chapter 2.

Given the diversity of the disabled student population, and the variance of severity possible within each disability category, the very idea of making decisions regarding how and where they should be educated on anything other than an individual basis seems preposterous.

Is Your Child's IEP Ready to Go Back to School?

Well, it's that time of year again. Time to prepare the kids to go back to school.  As a parent, this usually means buying clothes and gathering school supplies, lining up after school care or activities, maybe getting sports physicals or band instruments. If you have a child in Special Education, it's time to break out the current IEP and review it!
What? That's not part of your back to school routine? Well, it should be!

Why? Because things change. Circumstances change. Teachers, periodically schools, change. Needs change. IEPs are not written in stone and there is no one specific time for making revisions. The IDEA requires review of the IEP AT LEAST once annually by the IEP team (20 U.S.C. Section 1414(d)(4)(A)(i)). If upon review, you feel there are issues to be addressed, it would be better to address them right away. If any new issues come up later on, you can always request another meeting.

The language and never ending list of acronyms used in preparing IEPs can be difficult to decipher. Don't hesitate to consult an advocate, like myself, if you have any questions or need assistance making sense of it all. Here are some basic guidelines:

The first part of an IEP will set out the child's Present Levels of Performance. This is the information upon which the rest of your child's IEP is based. If a need is not indicated here, it will not be addressed so it's imperative this information be comprehensive, accurate and up to date. The levels are based on evaluations, assessments, observations and pretty much all the same sources used to determine eligibility. Academic Levels of Performance refer, of course, to language arts, math, science and social studies.

For example, say Calvin is in third grade but his Present Levels indicate his reading is on a first grade level. This would show an academic need for reading intervention.

Present Levels of Performance also include the child's functional performance levels. These include things like communication and social skills, behavioral and mobility skills and basic life skills.
In reviewing these levels, make note of any changes, assessments, evaluations that have occurred since the last meeting that would have an effect on your child's current levels. If there are inaccuracies or if they haven't been updated in a while, make note of that as well.

The next section of the IEP will be the goals set for your child. There should be goals to address each and every need indicated by the Present Levels of Performance. If you find a need unaddressed, make a note of it. A well written goal should be SMART:

• Specific, 
  
• Measurable, 
• use positive Action words,
• Realistic and 
• include a Time limit. 

Using our example of Calvin, we want to increase his reading level. A SMART goal might be:

"By the next annual ARD meeting, when given second grade material, Calvin will read 90 wpm (words per minute) with 5 or fewer errors". 

It is specific. "Calvin will increase his reading level" is too general. The reading of 90 wpm with 5 or fewer errors is easily measurable. Calvin "will read" is a positive action statement. Expecting him to jump from a first to a third grade level may not be realistic. The statement also sets a time frame of the next ARD meeting by which the goal should be attained.  Do your child's goals meet these criteria? If not, make a note.

There should next be a statement as to how progress will be measured during the time frame and how and when parents will be notified of the progress. Have you been receiving reports on your child's progress? Has your child attained, or made progress toward attaining, the goals set? If not, why not?

Finally, review the SPED and related services, accommodations, modifications and support services your child is currently receiving. These make up the tools used to enable your child to achieve the goals set to meet the needs assessed. Got it?? Again, there should be at least one to meet each of the child's identified needs. They should include:

• a description of the service/accommodation etc. to be provided (say, individualized reading instruction for our Calvin), 
• who will provide it (reading specialist or similar highly qualified teacher), 
• when it will be provided (beginning Sept. 1, 2012), 
• where it will be provided (resource room), 
• how often (3xs/week) and 
• for how long (for 30 minutes).

If you have any questions or concerns about any part of the services your child receives, make a note of them.

Making sure your child has the services and supports he needs in place will help ensure a happy and successful transition to the new school year.

Parent Advocate: Checking YOUR Baggage at the Door

When we first become parents, we cannot help but reflect on our own childhood. It is, after all, our only real frame of reference. We remember all the happy times and look forward to continuing those traditions or sharing similar experiences with our children. We also recall our more painful and unpleasant experiences, our mistakes and regrets (come on, we all have them) and silently vow to never let such things happen to our kids. This is just some of the "baggage" all parents carry with them.

As our children grow, we tend to see more and more of ourselves in them. At first, it's physical characteristics like eye color or a crooked smile. Later, other inherited traits begin to manifest; some positive, some not so positive. Your daughter may share your wry sense of humor as well as your poor body image. Your son may have your musical ability and your temper.  We see our children react to situations in eerily familiar ways and say to ourselves, "Yep, That's my child alright." We identify with them and their experiences as we are reminded of similar experiences we had growing up.

There is a danger, however, in over-identifying with our children. If we have unresolved issues, for example, arising from painful childhood experiences, we can unwittingly project those negative feelings onto our children. Parents may become over protective or overly defensive of their children as they subconsciously try to right the wrongs of their own past. More baggage! This can be especially true if the child has a disability.

A parent's response to learning a child has a disability can vary depending on many factors, some of which include the severity of the disability, whether one or both parents have a disability and the parent's perception or understanding of the disability. Some parents may experience feelings of anger or resentment, anxiety or fear over their child's future, panic and confusion. In my experience, the one response we all seem to share on some level is guilt. What did we do wrong? Is there something more we could have done? No matter what parents initial responses are, they are usually accompanied by an overwhelming need to fix it or make things better for their children.  That baggage beginning to feel a little heavy?

We all want to protect our children but we also want them to have as full a life as they possibly can. This includes an appropriate education.

Enter the Parent Advocate.

In order to effectively advocate for our children, as parents we must not allow our emotions to get the better of us. That means when meeting with school personnel, leaving our baggage at the door. It isn't easy. I say that not as a casual observer but as a parent who has literally been there and done that. I would see my children struggling with things like peer relationships, attention problems and bullying, things I too had struggled with as a child and I would be filled with emotions. It took me a while to realize that leading with my emotions clouded my judgment. I became vulnerable.  I would storm into meetings and make demands and point fingers and accomplish little, if anything. I would walk out of the meeting and spend the next hour (or week) kicking myself for agreeing to services or supports I knew were either inappropriate or inadequate.

What is the best way to keep your emotions in check? I may sound like a broken record but the answer is to PREPARE. We can't stop having emotional responses to our children's struggles but we can stop acting on them. When a problem arises, don't storm into the front office guns blazing. Instead, take some time to let your initial reaction settle. If you feel the need to vent, call a friend or contact a support group.  Then, examine the problem rationally. Formulate a plan to address it. Request a meeting. Gather all the facts and information you can. Write down the key points and questions you want to raise. When the meeting starts, stick to the plan. To secure the supports and services your child needs will require the school's cooperation.  You are much more likely to get that if you are in control.