Monthly Archives: July 2014

Anxiety and Autism


Anxiety is one of the biggest challenges facing individuals on the autism spectrum. Parents and therapists and other professionals all want and need to know how to effectively manage feelings of anxiety in individuals with autism. While anxiety and autism seem to go hand in hand, there are relatively few resources that help manage these emotions.

Managing Anxiety in People with Autism by Dr. Anne Chalfant is one of those incredible resources that gives both parents and professionals the tools for handling anxiety and autism.

Anyone who has experienced anxiety knows how debilitating it can be — it affects us at work and home, interferes with sleep, affects our appetite, and can make daily activities a challenge. For individuals with autism, anxiety often impacts family, social, and academic life, which adds to the additional difficulties associated with autism.

People with autism often struggle with social situations — knowing what to say, how to use eye contact, using appropriate body language, and initiating conversations. Thus, individuals with autism are much more likely to be anxious about their social abilities than their neurotypically developing peers.

Dr. Chalfant also points out in her book that people with autism also typically utilize “black and white” thinking, meaning they have trouble accepting exceptions to rules or beliefs or difficulty integrating new information. Dr. Chalfant uses the example of a child with autism meeting an aggressive dog; that child is more likely to think all dogs are aggressive (and have those feelings of anxiety associate with this situation) than to believe that some dogs are aggressive and others are friendly.

Emotional regulation is a third cause of anxiety that Dr. Chalfant notices in individuals with autism. When individuals with autism react to a situation, it is often with extreme emotions. When they feel anxiety, individuals with autism really experience that emotion, and it is often severe. People with autism also often have more trouble identifying triggers and appropriate responses to these anxiety-causing situations.

While anxiety and autism are so closely linked, many parents would admit that the subject of anxiety reducing techniques was not a pressing issue when their child was first diagnosed. Therapy might include behavioral, occupational, speech, and other early interventions, but anxiety management is often overlooked. While it might be unrealistic to think anxiety will go away completely, it can be greatly diminished, and individuals with autism can learn techniques for managing anxiety and utilizing these practices for themselves, which improves overall independence.

One huge trigger for individuals with autism is change. Changing a routine or environment can have an extreme impact on a person with autism. Some techniques for decreasing anxiety (and the tantrums, anger, stress, and other emotions associated with it) include discussing the change and using social stories. Helping a person with autism really understand what is happening can help them prepare for the change. Social stories include pictures and often audio that will explain a scenario, and they give that black and white depiction of an event that people with autism can understand more easily. The more you introduce to a person with autism, the more likely they are to accept, understand, and respond appropriately.

Give plenty of positive reinforcement, especially when a child with autism is acting calm. Use their favorite reinforcers, such as a sugar-free animal cracker or a tap on the shoulder. Use reassuring pictures, such as photos of loved ones or favorite places. Use weighted blankets or other sensory items as a calming device.

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Adopting the Special Needs Child


People always tell me they look up to me for having a special needs child and dealing though all the trials and struggles. MY HEROES are the people who chose to adopt these kids knowing what they are taking on. AMAZING!! Here is a story of a couple who did.

On an unusually cold day in Hong Kong, China my husband and I walked into an orphanage to meet a four year old child who would soon become our son. Hours later we walked out of the orphanage not only with a new family member in our presence, but with a new title as well–special needs family.

At the time of adoption, our son had been diagnosed in Hong Kong with severe Autism and significant cognitive delay. We weren’t entirely sure what to expect once we were home. We knew that outside of the orphanage he would be able to reach his full potential and that his diagnoses might change. As weeks turned into months, we realized that our son not only had significant special needs, but that he was deeply traumatized by his past four years of institutionalization. The first year home was a challenging time of growth and adjustment for us all. Now we are approaching the 1.5 year mark home and life seems to finally be reaching a new level of normal. Our son’s diagnosis remains, but he has made remarkable progress.

The most frequent question we get from others is “why?” Why would we adopt an older, special needs child with very difficult behavior who will most likely need life-long care? The answer is not simple nor is it easy to explain. My husband and I always knew that we would grow our family through adoption instead of the “traditional” way. Four years ago we adopted our first son, a young child from Vietnam. We had initially thought we were only capable of adopting and parenting a healthy infant. We were scared of the term special needs and all that it implied. Somewhere along our path, however, our hearts and minds were changed. We ended up adopting a waiting child from Vietnam with minor health issues. After the adoption of our first son, our eyes were opened to the fact that many orphaned children around the world were indeed older with special needs. We also had heard how older, special needs children were usually aged out of the orphanage and sentenced to a life of institutionalization if not adopted. We witnessed this fact with our own eyes and vowed that the next time we adopted, it would be an older, special needs child. So four years later, we found ourselves in Hong Kong, doing just that.

Adopting an older, special needs child is not for the faint of heart. It takes thick skin, compassion, a lot of patience, perseverance and a heart that is not easily broken. Although we tried to prepare for the arrival of a special needs child, there is only so much you can learn from books or other families. It wasn’t until we were living the reality that we truly understood just how hard and rewarding the job of a special needs parent is. In fact, we are still learning. If you are thinking about undertaking this challenging but rewarding path, here are some practical questions to as yourself:

Will your medical insurance cover all the services that your new child will need? If not, are you prepared to pay for them out of pocket?
Do you have a flexible schedule that will allow you time to take your child to the many appointments and therapy sessions that will surely be needed?
Are you willing to make changes to your current style of living in order to accommodate your new child?
Are you prepared for encountering significant attachment issues that may be amplified by your child’s special needs? Do you have therapists and strategies in mind to help you deal with these types of challenging and stressful issues?
Do you have a support team in place; friends, family members, church/synagogue staff who are supportive and willing to help your family during the adjustment period and beyond?
Do you feel comfortable talking with medical professionals, therapists, school staff and others with whom you will be in contact on a regular basis?

Adopting our older, special needs child was a leap of faith for our family. Although we have been stretched emotionally, physically and financially, I would not change a single moment of our journey. Though the challenges we face each day are real, so are the joys and triumphs. Adopting an older, special needs child has made me stronger, wiser, more patient and has helped me to focus my life on the things that are most important–love, family and all the things that money cannot buy. Our son is home and thriving and we have a new, wonderful outlook on life. No matter what lies before us, we will do something amazing, we will tackle it together as a family. Unfortunately, not all children with special needs have this luxury.

To find out more about adopting a special needs child, be sure to check out these resources:

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Should Mothers Of Special Needs Children Work? The Eternal Dilemma Of Motherhood!


Do you work? This question has become the second most important question asked after how are you? Or what’s your name? And if one thinks that this is another way of exchanging pleasantries amongst men meeting for the first time then you are mistaken, men don’t really ask this. They take it for granted that the other man must be working. It is mostly the working women asking this to measure the worth of other women.
Picture a new group of Mothers or old friends meeting after a long time and you’ll be surprised that this question makes its way rather too soon in the course of any conversation. At the cost of sounding cynical I feel this to be a really unnecessary piece of information anyone needs to know or better still ask.

Every Mother works. Yes, every one! I am surprised why work is still not made the synonym of motherhood! The choice to work full time, part time or stay at home should remain with the mother. And there should be no prejudices about their choices. We all get it! But is it this simple?

When I thought of writing about what makes women leave a well established career for looking after their child with special needs, I realized this is not what it looks like. The choice of working or not working is not easy and no matter what one chooses they are bound to feel guilty. More than a curiosity it was a need to understand what goes on in the mind of mothers when they take career transforming or life changing decisions of either leaving a flourishing job or juggling it with an ever mounting guilt for the care of their special needs child.

A lot of mothers put their careers on hold even in case of typically developing children but that is different because once they grow up to be self sufficient these mothers can start afresh or get back to their field of interest, of course the long hiatus does make it difficult but In case of children with special needs this choice is not as natural or uncomplicated.

Lisa Jo Rudy,’s guide to Autism and the mother of a child with PDD-NOS, Warns about Parents giving all their efforts and time to their special needs child at the cost of interdicting everything and everyone else. She further writes

“Can you really live well (in all respects) if you are completely dedicated to your child? If you give up your career for your child’s needs, will you resent your child? If your child doesn’t respond to your care, treatments, or love — will you feel that you’ve given up too much? If you quit your job, will you be utterly isolated? Think about your needs and your child’s needs not just in terms of time but also in terms of money, sanity, self-esteem, and peace of mind.”The exact same emotion was conveyed to me by Ranjan Sharma, a professional photographer and father of a girl with Down syndrome. He writes “Circumstances may or may not be in your control but if you are determined what you want out of your life, no one can stop u from achieving it. Having a special needs child doesn’t change much. If need help ask for it u will mostly get it.”

The question is ‘what do you want?‘ The answer should and must not be based solely on the circumstances because there are Mothers who are managing work, home and care for their child with special needs brilliantly. People like Ellen Seidman@ love that Max have given us a great example of balance. Ellen is a magazine editor, web content developer, freelance writer, blogger and a Mother of two. Her son Max has cerebral palsy. She writes across various sites and blogs to make people educate and aware about disabilities.

In one of the posts comparing special needs parenting to typical parenting, she writes, My Catch 22 is one I think many parents of kids with special needs have to contend with. Since Max was a baby, I’ve done full-time work in an office. This is partly for my mental well-being; I love my work, and I need to have that life (not to mention the income). But I don’t know that I’d ever say I wholeheartedly prefer it. I know that my son needs me and I have at times felt amazingly guilty for not being there for him. She further writes, if you ask me what kind of job I do as a parent, I’d say “Good enough.” Because that’s the best I can do, and I have learned to be satisfied with that.
Another friend, a parent and the creator of “Down Syndrome support group India“ Shivani Dhillon writes “Working full time for a mother of any child irrespective of disability should be a choice made with no guilt. Even though I lived a fast life being a journalist, I am now so content not working. A decision I have never regretted.Two women with different choices but the fact that the choices they made aligned with what they wanted and not something they had to feel sacrificial or resentful about. The guilt is inevitable and it would creep in no matter if you work full time or are a stay at home mother.
I am a teacher and have pretty good work timings but still feel guilty about either the house not being clean or not being able to take Aarshia to park or to teach her when I am too tired. But the point is if the big picture is what you believe in these small guilt trips are easier to deal with.Areva D. Martin, writing about “Balancing a Career and Mothering an Autistic Child” shares how in search of an appropriate balance she met with Dr.B.J. Freeman, Ph.D., a renowned psychologist and got the best advice ever. She writes “Dr. Freeman told me that the key to successful parenting is (to the extent possible) to fit the child into your life’s schedule, rather than completely rearranging your life around the child. Some of the happiest families she saw in her practice were those that embodied and lived by this principle”. I couldn’t agree more.
The choice to work or not work should not be based on right or wrong. It should rather be a personal decision. The decision to be a full time carer should not lead to bitterness and anguish.”Denise schipani” a famous Blogger writes, your children should add to your life, not subtract what’s most essential about you!

Some of the greatest advice by Mothers who are maintaining a great work life balance is here for all of us to read and ponder on…

1. Change your career
A lot of mothers find it easier to work in flexible time arrangement or in the disability field after their child’s birth. One it gives them a new perspective plus an advantage to learn what can be beneficial to the child.

2. Appreciate the distraction it provides
In the words of Angela Patterson,’s guide to Dallas and the mother of a child with Angelman syndrome, “Working is therapy for me. When I work, I tend to lose myself in it for a few minutes (or hours). I focus on my current project, not my child’s problems or her school. I write about the here-and-now things. I think working helps me to be a better parent. Just finishing an article gives me such a sense of accomplishment. Well said!

3. Basic organizational skills
There are parents who in spite of being at home are not able to devote as much time and effort as some full time working mothers can do and achieve. It doesn’t mean that either choice is bad or good. It just means that with some organizational skills, a lot can be achieved without giving up on your choice of life.

4. Taking care of yourself
Even if you are a stay at home or full time working mother taking care of yourself should definitely be a work of priority. Balancing home, work and a special needs child is not for weak hearted and you should be proud of the fact that you are doing it to the best of your capacity. Pampering and rewarding yourself for the same can bring out positivity and help boost self confidence.

5. You are not indispensable
Understand it, think about it and accept it. You might feel like you are the only hope for your child and if you are not physically around than your child would never learn the things he would do with you, but the fact remains the same, none of us are indispensable. Try and make them independent and create a network or a group of people that can come handy when you are not there. Prepare your kids and condition them for the same. So be there for your angels but at the same time do realize that they have a life apart from you and you have the same as well. And if you feel that you are indispensable, read this! It will help you put things back in perspective!

The Indispensable Man
(by Saxon White Kessinger)

Sometime when you’re feeling important;
Sometime when your ego ‘s in bloom;
Sometime when you take it for granted,
You’re the best qualified in the room:
Sometime when you feel that your going,

Would leave an unfillable hole,
Just follow these simple instructions,
And see how they humble your soul.

Take a bucket and fill it with water,
Put your hand in it up to the wrist,
Pull it out and the hole that’s remaining,
Is a measure of how much you’ll be missed.
You can splash all you wish when you enter,
You may stir up the water galore,
But stop, and you’ll find that in no time,
It looks quite the same as before.

The moral of this quaint example,
Is to do just the best that you can,
Be proud of yourself but remember,
There’s no indispensable man.

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20 Quotes to Encourage Special Needs Moms (and Dads)


A friend mine is facing several upcoming appointments with the Developmental Pediatrician for 2 of her children. She’s on that never ending journey that Moms of Special Needs children are on to provide the best care for their children. It’s a winding path with lots of dead ends, twists & turns. She’s feeling discouraged and a little overwhelmed, not just with the fight with the outside (doctors, therapists, mountains of repetitive paperwork), but the internal fight of “did I miss something… if only I was a better mom”.

So I decided to do a post of quotes to encourage her and any other moms along this path. Sometimes the best thing you can do for a mom in this situation is walk along side them and listen and encourage and then listen some more. By doing that, you let them know that, at least in this moment, they are not alone.

20 Quotes to Encourage Special Needs Moms

“The more I read and the more I talked to other parents of children with disabilities and normal children, the more I found that feelings and emotions about children are very much the same in all families. The accident of illness or disability serves only to intensify feelings and emotions, not to change them.” ~ Judith Weatherly
“You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil … you are the mother, advocate and protector of a child with a disability.” ~ Lori Borgman
“I thank God for my handicaps, for through them I have found myself, my work and my God.” ~ Helen Keller
“I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.” ~ Christopher Reeve
“I was slightly brain damaged at birth, and I want people like me to see that they shouldn’t let a disability get in the way. I want to raise awareness – I want to turn my disability into ability.” ~ Susan Boyle
“The central struggle of parenthood is to let our hopes for our children outweigh our fears.” ~ Ellen Goodman
“I put up a huge wall of denial. It was years before I was able to break through it… accepting that your child has a disability, especially one like LD that cannot be seen or easily diagnosed, is one of the hardest things to come to terms with.” ~ Anne Ford
“Perseverance is not a long race. It is many short races one after another.” ~ W. Elliot
“I know God will not give me anything I can’t handle. I just wish He didn’t trust me with so much.” ~ Mother Teresa
“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.” ~ Martina Navratilova
“It is a lonely existence to be a child with a disability which no-one can see or understand, you exasperate your teachers, you disappoint your parents, and worst of all you know that you are not just stupid.” ~ Susan Hampshire
“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” ~ Christopher Reeves
“I am careful not to confuse excellence with perfection. Excellence, I can reach for; perfection is God’s business.” ~ Michael J. Fox
“I choose not to place “DIS”, in my ability.” ~ Robert M. Hensel
“Courage is being scared to death – and saddling up anyway!” ~ John Wayne
“Just because a man lacks the use of his eyes doesn’t mean he lacks vision.” ~ Stevie Wonder
“Go as far as you can see; when you get there, you’ll be able to see further.” ~ Thomas Carlyle
“I have had this desire my whole life to prove people wrong, to show them I could do things they didn’t think I could do.” ~ David A. Paterson
“What lies behind us & what lies before us are tiny matters compared to what lies within us.” ~ Ralph Waldo Emerson
“Children remind us to treasure the smallest of gifts, even in the most difficult times.” ~ Allen Klein
Is there a Special Needs Mom (or Dad) you know that could use some support and encouragement? Feel free to share these quotes with them. Many families with special needs children walk a very lonely road. Reaching out to share just a little encouragement will go a long way.

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Attention and Learning Problems: Which Came First? Part 2


Attention Problems: Looking for Problems In Self-Management
Attention/behavior control problems may range from normal temperament variation to severe Attention-Deficit/Hyperactivity Disorder (ADHD). ADHD is the most current term for children who experience levels of inattention and/or hyperactivity and impulsivity that are excessive for their age and causes impaired functioning in more than one setting (home, school, friends, play or work). The three subtypes of ADHD are the predominantly Inattentive type (formerly called ADD), the predominantly Hyperactive-Impulsive type, and Combined type (with both inattentive and hyperactive-impulsive symptoms).

Children with ADHD are more likely to show
normal milestones although sometimes with fine motor delays
a family history of ADHD, attention or behavioral problems
hyperactivity, when present, noted in preschool but decreases to restlessness as the child ages
impulsivity such as calling out, acting without thinking or excessive talking
difficulty with effortful attention, often more evident once in school
problems with “budgeting” of attention and may over-focus on favored activities
need for frequent prompts or reminders to start or complete routine tasks
problems across multiple situations but with variable severity
difficulty in group or independent work but does well one-on-one
impulsive, “careless” errors and inattention to detail across subjects
problems with listening comprehension or academic “gaps” due to inattention or “superficial grasp” of material
written expression problems are most common
report cards and tests show highly inconsistent grades across subjects
difficulty with organization in and outside of school
tendency to “fade” or drift off during sustained tasks such as reading or chores
low frustration tolerance and lack of persistence unless highly engaged
better scores in testing than performance in the classroom or on homework
testing often shows deficits in “executive functions,” such as poor planning or problem-solving
social problems because of annoying behavior and conflict

Succeeding With LD and ADHD: Targeted Interventions and Positive Supports
Once learning and attention problems are identified a multi-modal management plan should be developed. LD and ADHD are chronic problems but functioning can be improved with targeted interventions and positive, strength-based approaches.

Children with learning disabilities benefit from specialized instruction targeting their processing deficits in a systematic manner. If they qualify as having a Specific Learning Disability (SLD) under the Individuals with Disabilities Education Act (IDEA) an Individualized Education Program (IEP) is developed to meet their needs.

Interventions for children with ADHD should include positive behavior management, educational interventions and medication when appropriate. Behavior management at home and school should emphasize increased structure, reinforcement for appropriate behavior and avoid punitive punishments. If ADHD results in substantial educational impairment they can qualify for an IEP under the Other Health Impaired (OHI) category. If a child with ADHD doesn’t qualify under IDEA but requires supports, modifications or accommodations in the classroom a Section 504 plan may be implemented.

Medication can be an important part of the treatment program for children with ADHD. Medications, such as Ritalin®, Adderall® or Strattera®, improve capacity for sustained, effortful attention and impulse control. However, medications do not teach better skills or extinguish bad behaviors. Appropriate educational and behavioral interventions are still essential. Medications can help a child with ADHD be more available to absorb and apply new skills and to be able to reflect (at least briefly!) before acting. Response to medication cannot be used as a “test” for ADHD. Only about 70 percent of children with ADHD respond to the first medication tried. Even if a child shows behavioral improvement, medication will not address an underlying learning disability. When both LD and ADHD are present medication can help support the extra “brain work” needed to compensate for processing problems.

The key to long-term success for children with LD and/or ADHD is a positive attitude and an emphasis on developing strengths. Parents and teachers should foster a resilient, problem-solving approach to life’s challenges. Children should have opportunities to devise alternative ways of meeting goals, develop their talents and use their skills to help others. A child should not be limited by their learning or attention differences, but inspired to achieve by using their different strengths and passions.

ADHD and LD References
National Center for Learning Disabilities
CH.A.D.D. (Children and Adults with Attention Deficit Disorders). The federally funded National Resource Center (NRC) toll-free number (800-233-4050); English and Spanish.
National Association of School Psychologists, NASP Center at 4340 East West Highway, Bethesda, MD 20814

Books for Professionals
Diagnostic and Statistical Manual of Mental Disorders, 4th ed- text revision.: DSM-IV-TR. (2000) Washington, DC: American Psychiatric Association
DuPaul GJ, Stoner G. ADHD in the Schools: Assessment and Intervention Strategies. 2nd ed., (2003) New York: Guilford Press
Reif, S. How to Reach and Teach ADD/ADHD Students: Practical Techniques, Strategies, and Interventions for Helping Children with Attention Problems and Hyperactivity Revised. (2005) San Francisco: Jossey-Bass
Swanson, HLee (Ed); Harris, Karen R (Ed); et al. Handbook of Learning Disabilities. (2003). New York, NY, US: Guilford Press.

Books for Parents
Levine MD. One Mind At A Time (2002). New York: Simon and Schuster.
Shaywitz S. Overcoming Dyslexia: A New and Complete Science-Based Program for Reading Problems at Any Level MD (2003) New York: Alfred A. Knopf.
Reiff MI, Tippins S. ADHD: A Complete and Authoritative Guide. (2004) Elk Grove Village: American Academy of Pediatrics Press.
Silver, L. The Misunderstood Child: Understanding and Coping with Your Child’s Learning Disabilities, 4th Edition (2006) New York: McGraw Hill.

Aaron PG, Joshi RM, Palmer H, et al. Separating genuine cases of reading disability from reading deficits cause by predominantly inattentive AD/HD behavior. Journal of Learning Disabilities (2002) 35, 425-435.
American Academy of Pediatrics. Clinical Practice Guideline: Diagnosis and Evaluation of the Child with Attention Deficit/Hyperactivity Disorder. Pediatrics (2000) 105:1158-70.
American Academy of Pediatrics, Subcommittee on Attention-Deficit/Hyperactivity Disorder and Committee on Quality Improvement. Clinical Practice Guideline: Treatment of the School-age Child with Attention-Deficit/Hyperactivity Disorder. Pediatrics (2001) 108:1033-44.
Biederman J, Monuteaux MC, et al. Impact of Executive Function Deficits and Attention-Deficit/Hyperactivity Disorder (ADHD) on Academic Outcomes in Children, Journal of Consulting and Clinical Psychology (2004) 72(5):757-766.
Cutting LE; Koth CW; Mahone EM, Denckla MB. Evidence for Unexpected Weaknesses in Learning in Children with Attention-Deficit/Hyperactivity Disorder Without Reading Disabilities. Journal of Learning Disabilities. (2003) 36(3):257-267.
Fletcher JM, Shaywitz SE, Shaywitz BA. Comorbidity of Learning and ADHD: Separate but Equal. Pediatric Clinics of North America (1999) 46(5):8885-898.
Hazell PL, Carr VJ, et al. Effortful and Automatic Information Processing in Boys with ADHD and Specific Learning Disorders. Journal of Child Psychology and Psychiatry (1999). 40(2):275-286.
Mayes SD, Calhoun SL, Crowell EW. Learning Disabilities and ADHD: Overlapping Spectrum Disorders. Journal of Learning Disabilities (2000) 33(5):417-24.
Miller KJ. Executive Functions. Pediatric Annals (2005)34(4):310-317.
Semrud-Clikeman M. Neuroimaging and Psychopharmacology. School Psychology Quarterly (2005) 20(2):172-186.
Willcutt EG; Pennington BF, et al. A Comparison of the Cognitive Deficits in Reading Disability and Attention-Deficit/Hyperactivity Disorder. Journal of Abnormal Psychology.

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Attention and Learning Problems: Which Came First? Part 1


Charlie looks around his first grade classroom when it’s reading time. He needs frequent reminders to get back to work. His teachers and his parents are puzzled why such a bright boy is having trouble in school. Could it be an attention deficit causing the problem? Could a learning problem cause the inattention? How can they help Charlie succeed?

Learning and attention problems are common and can range from mild to severe. From five to 10 percent of school-age children are identified with learning disabilities (LD). At least five to eight percent are diagnosed with Attention-Deficit/Hyperactivity Disorder (ADHD). Many of these children have both. Although the studies vary, 25 to 70 percent of children with ADHD have a learning disability and from 15 to 35 percent of children with LD have ADHD. There are many children who have milder learning or attentional problems but the additive effects can be significant. Even mild dysfunctions in these critical brain functions can create problems as demands increase in secondary school, college and in life.

Attention and learning are related brain processes, separate but dependent on each other for successful functioning. “Learning” is the way the brain uses and remembers information like a factory taking in raw materials, storing parts and then manufacturing and shipping a finished product. “Attention” involves brain controls which regulate what information gets selected as important and gets acted on. The attention/behavior control system acts like the executives at the factory distributing the “brain energy” budget, setting priorities, deciding what to produce and monitoring quality control. Late shipments or poor quality products could be the result of any number of “glitches” in either system. Minor problems in one system can be compensated for but when both systems are affected failure looms. Sorting out the breakdown points is critical but can be complicated.

Evaluation: Look Beyond Symptoms
Comprehensive assessment is needed as some of the symptoms of learning and attention problems may look similar, at least on the surface. A child may be “distractible” because weak attention controls are unable to filter out unimportant sights or sounds. However, if reading is too difficult the child may look around because it doesn’t make sense. A child might be “disruptive” because their behavior controls are weak and they impulsively call out or annoy others. Some children with learning problems may act-up out of frustration or embarrassment. They would rather be considered “bad” than dumb. Other difficulties that can occur with either learning or attention problems might be:

Underachievement despite good potential
Inconsistent concentration
Difficulty with time-limited tasks
Problems with starting/completing work
Messy writing or disorganized papers
Low self-esteem
Problems with peer relations
Behavior problems
Secondary emotional problems due to repeated failure and frustration

Evaluation includes a careful review of a child’s history (medical, developmental, behavioral, educational), family situation, current functioning and appropriate testing. Information is gathered from parents, school records, school staff, medical providers, other professionals and the child. Testing for learning disabilities includes cognitive (IQ) and achievement testing with speech/language, motor skill and other evaluations as needed. Medical consultation with a primary care provider, developmental-behavioral pediatrician, child psychiatrist or neurologist is often needed, especially when attentional, medical, developmental or emotional issues are present. Rating scales are often used to assess behavior or emotional functioning.

Learning Disabilities: Looking for Processing Problems
As learning disabilities reflect the brain’s difficulty in processing certain kinds of information, the evaluation process looks for historical clues and evidence of specific patterns of strengths and weaknesses. Children with learning disabilities are more likely to show:

history of developmental delays
family history of learning problems
normal medical evaluation but can have motor coordination issues
language delays that may include mixing up sounds in words (e.g., aminal for animal)
a lot of knowledge but difficulty in expressing ideas clearly
slowness with learning academic readiness skills (e.g., letter identification)
difficulty applying learned skills rapidly and automatically resulting in labored reading and poor reading comprehension
report cards and tests that show consistent pattern of difficulty in one area
individual testing shows distinctive patterns, such as deficits in phonological processing (pulling apart sounds in words) and delays in reading words.
behavioral issues occur when processing weakness are stressed (e.g., too many instructions given at once when deficits in language processing are present).
social problems because language processing impacts negotiation skills or visual-spatial problems result in standing too close to others.

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Tax Strategies for Parents of Kids with Special Needs



Tax Strategies for Parents of Kids with Special Needs – Updated for Obamacare
December 1, 2013

The Patient Protection and Affordable Care Act (PPACA), known as OBAMACARE, has some significant implications for special needs families. While we are just beginning to see how far reaching this act is, I am going to limit my remarks to how this act specifically affects tax deductibility of medical expenses typically incurred by families with special needs. If you need assistance with understanding or accessing the insurance marketplace, I suggest you speak with a knowledgeable insurance agent. This article supersedes a similar article I wrote in February of 2011. Changes due to OBAMACARE are so noted.

The information in this article is educational in nature and is not to be considered tax advice. Please contact a qualified tax professional to discuss how these concepts may or may not apply to your personal situation.

Medical Expense Deductions

The IRS code allows medical deductions per section 213:

“The term `medical care,’ as used in this subsection, shall include amounts paid for the diagnosis, cure, mitigation, treatment, or prevention of disease, or for the purpose of affecting any structure or function of the body.”

This is a pretty broad definition of medical care. The nature of the IRS code is that it is refined by both revenue rulings and tax court cases, such that the phrase ‘any structure or function of the body’ includes both mental and physical functions. Accordingly, medical care can include tutoring and special schooling for learning disabilities but does not include things like elective plastic surgery for purely aesthetic reasons. There are some very specific circumstances when legal fees can qualify as a medical deduction if they were incurred to access medical care.

INCREASE in limitation for medical expenses

For 2012 and prior years, medical expenses for most taxpayers were limited to the amount in excess of 7.5% of Adjusted Gross Income (AGI). For those subject to Alternative Minimum Tax, that limit was 10%. OBAMACARE increases the AGI limitation to 10% for ALL taxpayers.

There are many out-of-pocket costs may cause you to exceed that limitation. Costs that can be deducted include:

Special Schooling including tuition or tutoring by someone especially trained to meet the child’s needs. The purpose and primarily reason for the choice of school must be to alleviate or remediate the disability.
Typical preschool education as the primary purpose is for socialization required because of developmental delays, not education.
Aides required for a child to benefit from regular or special education.
Special instruction, training or therapy such as OT, Speech, remedial reading, etc.
Diagnostic evaluations by qualified personnel.
Exercise program if recommended and monitored by qualified medical personnel to treat a specific condition, includes yoga, dance, horseback riding, etc.
Transportation: Mileage to and from special schools or therapy sessions. MEDICAL MILEAGE RATE WILL INCREASE TO 24 CENTS PER MILE FOR 2014. Also parking fees. Airfare for parents and child to obtain treatment or testing.
Lodging required to obtain medical treatment, limited to $50 per night, per person. Meals during medical travel are not deductible.
Diapers – if toilet training is delayed due to a medical condition.
Equipment or devices used primarily for the alleviation of a person’s illness – examples would be specially designed bedding, car seats, etc. Rev Ruling 76-80.
Home Improvements – costs are deductible to the extent they exceed any increase in the home’s fair market value [Reg. 1.213-1(e) (1) (iii)]. Certain improvements (e.g., altering the location of or otherwise modifying electrical outlets and fixtures are deemed to have no affect on the home’s fair market value and thus, the full cost can be claimed as a medical expense [Rev. Rul. 87-106, 1987-2 CB 67].
Lead Paint Removal – The cost of removing the paint can be deductible if the child has lead poisoning from the paint. Lead poisoning can resemble and complicate other conditions, such as autism.
Parents’ attendance at a disability related conference. This good news came in May 2000, in IRS Revenue Ruling 2000-24. Parents who attend conferences primarily to obtain medical information concerning treatment for and care of their child may include the following admission and transpiration costs. Related books and materials are deductible. Attendance is considered to be primarily for and essential to the care of the dependent if:
Attendance at the conference has been recommended by a medical provider treating the child. AND
The conference provides medical information concerning the child’s condition – specific issues not just general wellbeing. AND
The primary purpose of the visit is to attend the conference.
BUT … Costs of food and lodging are generally NOT deductible.
Special Diets

Many people do not realize that the additional costs of following a specifically prepared medical diet such as the gluten-free, casein-free diet can also be considered medical expenses. On March 24, 2011, the office of the Chief Counsel of the IRS issued a letter clarifying this issue.

“Specifically, the excess cost of specially prepared foods designed to treat a medical condition over the cost of ordinary foods which would have been consumed but for the condition is an expense for medical care…. Therefore, if a taxpayer can establish the medical purpose of the diet, such as through a physician’s diagnosis, then to the extent the cost of the food for the special diet exceeds the cost of the food that satisfies a taxpayer’s normal nutritional needs if the special diet were not required, the excess cost is an expense for medical care under section 213(d).”

Here is an example of a GFCF Diet Deductible Worksheet. You can also claim mileage expense for the trip to the health food store and postal costs on gluten-free products ordered by mail. Specific products used only for a gluten-free diet such as xanthan gum are 100% deductible. You should save all cash register tapes, credit card receipts, and canceled checks to substantiate your gluten-free and or casein-free purchases. You will need to prepare a list of typical foods at typical grocery store prices to arrive at the differences in costs. You need not submit your documentation or computations with your return, but do retain them with your other tax records.

Very Important – Attach a letter from your doctor to your tax return. This letter should state that your child suffers from a medical condition which requires a special diet.

Legal Expenses

Legal expenses incident to medical care have been allowed as a medical expense deduction only when the legal expenses are “necessary to legitimate a method of medical treatment” Levine v. Commissioner [83-1 USTC ¶9101].

This means that attendance at IEP meetings is not a deductible legal or medical expense. However, if you have to engage a lawyer to enforce an IEP or IFSP, that may be deductible, especially if you are suing the school to hire appropriate personnel.

Things to Consider:

Subsequent Reimbursement
If you anticipate reimbursement from a school district or insurance company for any of these costs, that reimbursement will be includable as income when received if the deductions are taken. That could raise your AGI in the subsequent year causing you to lose other deductions. Deciding when or if to take deductions is an important reason to see a qualified tax professional.

401K/IRA Funds
Medical expense, it can also be used to justify a “hardship” withdrawal from a 401(k) retirement plan [Reg. 1.401(k (-1(d) (3) (iii) (B)]. However, the amount not subject to the additional 10% tax penalty is only the amount over 10% of AGI. Regular tax must still be paid on all IRA/401K withdrawals. Generally withdrawing retirement funds is not a good idea due to increased taxes and penalties.

Cafeteria Plans
If your employer offers a cafeteria plan; you can use the funds in that account to pay for treatments for your child. All the items noted above under medical expenses (schooling, tutoring, therapy, conferences, etc.) may be paid out of such an account. Tax-wise this is the most advantageous option as you are paying for these items with pre-tax dollars and are not subject to the 10% limitation. But, OBAMACARE limits the annual contribution to $2,500.

Even better than deductions, credits reduce $ for $ the amount of tax owed.

Child and Dependent Care Credit
Covers work related expenses for dependents of taxpayer. Dependent must be under the age of 13. If the child requires supervision due to a disability, the age limit no longer applies. A dependent is considered to be physically or mentally incapable of self-care if the dependent is incapable of caring for his or her hygienic or nutritional needs, or requires full-time attention of another person for his or her own safety or the safety of others [Reg 1.44A-1(b)(4)].

Covered expenses – up to $3,000 per year per dependent are allowed, max for all dependents is $6,000. Amount does not need to be equal among children. Regular childcare, after-school programs and day camp qualify. Sleep-away camps do not. Credit is calculated at 20-35 percent of expenses, based on AGI. The maximum credit per dependent is $600 for one child, $1,200 for 2 or more.

Planning strategy – use the first $3,000-$5,999 of special schooling costs to claim this credit; any remaining costs can be deducted as medical expenses. At least $1 must be for the other child to claim more than $3,000.

Earned Income Credit

Families with AGIs under $51,567 may qualify for EIC depending on number of children and filing status. EIC is normally limited to children under age 19. If the child is 19-23 and a full-time student, then he or she also qualifies. As long as a severely disabled child lives with his or her parent, there is no age limit for EIC.

Higher Education

Tuition Credits
American Opportunity Credit is up to $2,500 per student, per year for first 4 years of post-secondary education. The credit can be up to 40% refundable. The student must be pursuing an undergraduate degree or other recognized educational credential, enrolled more than 1/2 time, and have no felony drug convictions. This credit has been extended to 2017.

The Lifetime Learning Credit is a maximum of $2,000 per return, for all post-secondary education and courses to acquire or improve job skills, unlimited number of years, no degree required. Unlike the American Opportunity Credit, the felony drug conviction rule does not apply. The credit is computed as 20% of first $10,000 = $2,000.
However, there are limitations based on AGI. These benefits begin to phase out for higher income taxpayers at the lower number and are eliminated when AGI reaches the upper number.

American Opportunity Credit – $160,000 – $180,000
Lifetime Learning Credit – $100,000 – $120,000

Educational Expenses
Educational expenses may also be taken as a deduction. Tax return preparation programs generally maximize either credit or deduction. Maximum deductions are as follows:

$4,000 – AGI < $130,000
$2,000 – AGI $160,000
529 College Savings Plans

Contributions to a 529 College Savings Plan grow tax free until a child uses the funds. Qualified expenses include computers, software, room and board, which do not qualify for the above noted educational credits. Proper planning can maximize the use of educational credits, scholarship funds and withdrawals from 529 plans.

Important Limitation: If filing as Married Filing Separately, neither the education credits nor tuition and fees deductions apply. Also interest on student loans is not deductible.

IHSS Services (CA Only)

Your child may qualify for In Home Supportive Services. In which case, the State of California funds your child to employ you to take care of your child. You will receive a W-2 listing your child as your employer. As such, this income is not subject to Social Security or Medicare taxes but is subject to Federal and California income taxes. Do make sure you have adequately withheld for the income taxes.

NEW FOR 2014 – IHSS payments will no longer be subjected to Federal Tax. Read more here.

Respite Care (CA Only)

If you are a parent provider of respite care, you may receive a 1099 from the Regional Center. Attach a statement to your return showing the amount received, and the amounts paid to others, include any net amount on line 21 (other income) of your form 1040. If you paid more than $600 to any other provider, you should provide them with a 1099. If you paid household employees, there are additional payroll forms and taxes that if not filed can result in significant penalties, another reason to consult a qualified tax professional.

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Services in School for Children with Special Needs: What Parents Need to Know


Some children experience difficulties in school, ranging from problems with
concentration, learning, language, and perception to problems with behavior and/or
making and keeping friends. These difficulties may be due to one or more of the

• physical disorders,
• psychiatric disorders,
• emotional problems,
• behavioral problems,
• learning disorders (or disabilities).

Children with such special needs are usually entitled to receive additional services or
accommodations through the public schools. Federal law mandates that every child
receive a free and appropriate education in the least restrictive environment possible. To
support their ability to learn in school, three Federal laws apply specifically to children with special needs:

• The Individuals with Disabilities Education Act (IDEA) (1975)
• Section 504 of the Rehabilitation Act of 1973
• The Americans with Disabilities Act (ADA) (1990).

Different states have different criteria for eligibility, services available, and procedures for implementing these laws. It is important for parents to be aware of these laws and related regulations in their particular area.

The Laws
IDEA is a federal law (1975, amended by the Office of Special Education Programs in
1997) that governs all special education services for children in the United States. Under
IDEA, in order for a child to be eligible for special education, they must be in one of the following categories:
• serious emotional disturbance
• learning disabilities
• mental retardation

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What Is an IEP?


Each public school child who receives special education and related services must have an Individualized Education Program (IEP). Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.

To create an effective IEP, parents, teachers, other school staff and often the student must come together to look closely at the student’s unique needs. These individuals pool knowledge, experience and commitment to design an educational program that will help the student be involved in, and progress in, the general curriculum. The IEP guides the delivery of special education supports and services for the student with a disability.

General Steps In the Special Education Process
Child is identified as possibly needing special education and related services.
Child is evaluated.
Eligibility is decided.
Child is found eligible for services.
IEP meeting is scheduled.
IEP meeting is held and the IEP is written.
Services are provided.
Progress is measured and reported to parents.
IEP is reviewed.
Child is reevaluated.
Contents of the IEP
By law, the IEP must include certain information about the child and the educational program designed to meet his or her unique needs. This information covers topics such as current performance, annual goals, special education and related services, accommodations, participation in state and district-wide tests, needed transition services and measured progress.

The IEP Team Members
The team that writes a child’s Individualized Education Program includes the parent(s), regular education teacher(s), special education teacher(s), other individuals from the school and district and the student when appropriate.

A meeting to write the IEP must be held within 30 calendar days of deciding that the child is eligible for special education and related services. Each team member brings important information to the IEP meeting. Members share their information and work together to write the child’s Individualized Education Program. Each person’s information adds to the team’s understanding of the child and what services the child needs.

Writing the IEP
To help decide what special education and related services the student needs, generally the IEP team will begin by looking at the child’s evaluation results, such as classroom tests, individual tests given to establish the student’s eligibility, and observations by teachers, parents, paraprofessionals, related service providers, administrators and others. This information will help the team describe the student’s “present level of educational performance”—in other words, how the student is currently doing in school. Knowing how the student is currently performing in school will help the team develop annual goals to address those areas where the student has an identified educational need.

The IEP Team Must Also Discuss Specific Information About the Child. This Includes
the child’s strengths;
the parents’ ideas for enhancing their child’s education;
the results of recent evaluations or reevaluations; and
how the child has done on state and district-wide tests.
Depending on the needs of the child, the IEP team also needs to consider special factors, which include behavioral issues, limited proficiency in English, blindness or visual impairment, communication needs, deafness or difficulty hearing and assistive technology.

The Discussion of What the Child Needs Be Framed Around How to Help the Child
advance toward the annual goals;
be involved in and progress in the general curriculum;
participate in extracurricular and nonacademic activities; and
be educated with and participate with other children with disabilities and non-disabled children.
Based on the above discussion, the IEP team will then write the child’s IEP. This includes the services and supports the school will provide for the child. If the IEP team decides that a child needs a particular device or service (including an intervention, accommodation, or other program modification), the IEP team must write this information in the IEP.

After the IEP Is Written
When the IEP has been written, parents must receive a copy at no cost to themselves. Everyone who will be involved in implementing the IEP must have access to the document. This includes the child’s:

regular education teacher(s);
special education teacher(s);
related service provider(s) (for example, speech therapist); or
any other service provider (such as a paraprofessional) who will be responsible for a part of the child’s education.
Each of these individuals needs to know what his or her specific responsibilities are for carrying out the child’s IEP. This includes the specific accommodations, modifications and supports that the child must receive, according to the IEP.

Parents Permission
Before the school can provide a child with special education and related services for the first time, the child’s parents must give their written permission.

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Things to Do With an Adult With Special Needs


Many adults with disabilities still live in the care of a family member. Once they have graduated from a secondary school, many special needs adults lose their social connection and long for other ways to feel like a part of society. From day camps to art institutes, there are many activities to make your special needs loved one feel productive.

Activity Ideas for Developmentally Disabled Adults Activities for Adults With Disabilities

Work on Independent Living
Many special needs adults strive for independence, and sometimes the best fit for them is an apartment setting or small group arrangement. Work with your special needs person to develop a plan for independent living. Contact a local or state office dedicated to people with disabilities. Many apartment-living special needs individuals qualify for financial assistance.

The goal of employment is also reachable for some special needs adults. In Connecticut, for example, Project Genesis ( partners with the Bureau of Rehabilitation Services to provide work for special needs adults and staffing for local businesses. Some such programs feature a week or two during which the client gets a working interview, which gives him a feel for the job and brings no labor cost to the business.

Day Camps
Many towns have developed centers which feature educational opportunities for special needs adults. In Westerville, Ohio, for instance, is The Alternative Center, a day program which includes curricula in math and reading for adults with disabilities.

Throughout the country, day, week and summer camps provide special needs people with opportunities to interact with individuals of all ages through guided activities such as art, sports and trail hiking. For example, Camp Thunderbird in Orlando, Florida, provides certified lifeguards, 24-hour nursing care and a four-to-one camper-to-staff ratio.

Art Therapy
Special needs adults seek an identity and validation, and one of the ways to accomplish this is through artistic expression. According to the National Institute of Art and Disabilities (, the arts provide special needs patients enhanced self-esteem and socialization opportunities while providing the public with increased awareness of their abilities.

Art shows, such as the exhibit held at The University of California at Berkeley (, allow people with special needs to see the work of their peers. NIAD artists can also contribute to the beauty of surrounding communities. Several members previously created a mural for the Richmond Police Department. And in August 2011, NIAD performers were set to perform at an event featuring dancers and musicians.

Peer Social Activities
Organizations such as The Enterline Foundation ( provide links to each state’s activities for adults with developmental disabilities. In New Jersey, for example, links are provided to such activity-based groups as the Douglas Developmental Disabilities Center ( and Bancroft Neuro Health ( Excite Steps (, a San Diego-based group, provides social clubs and workout activities for special needs adults and their peers.

Read more :

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