It Doesn't Matter If Others Don't Understand Our Challenges Raising Special-Needs Children

I
found the hardest part about raising my special-needs child, who was also extremely difficult, was not dealing with him, but dealing with outside people.

Simply put, others did not understand. Because Devon was not physically challenged, they saw a bright, charming and smart kid with behavioral issues. So of course if they didn't know his back story, they looked at me and my husband askew.

Turn on any talk show, especially when he was growing up in the mid nineties, and the hot issue was parents and kids. It still is, but talk shows were new, and they could consistently get ratings with family issues, especially with kids. The parents were constantly, blamed and judged. They were always made to be wrong.

Growing up, our son Devon was emotionally challenged diagnosed with Reactive Attachment Disorder, ADD, Bi-polar and opposition ally defiant. When we adopted him at age 3, he had been in three different homes and was physically and sexually abused. He was born with PCP and Cocaine in his system. I wrote about our story in my memoir "A Mother's Journey: Finding Inner Peace Raising a Difficult Child."

So, most of my time, and my husband's time, was correcting teachers, mental health professionals, family, friends and others who all had a strong opinions of what we should be doing to help Devon.

Some looked at us as their "case," and they were going to try to save us. However, dealing with Devon, as an one-child psychiatrist told us after weeks of evaluation, "Was like dealing with a ghost." His behaviors couldn't be charted or predicted.

Walter said when dealing with Devon and trying to help him that "Devon remained the same, but the people changed."

He was so right.

And, when people had opinions and they didn't work. You could see them back away. It never failed. We went from "slacking" parents in their eyes to angels. We often heard the same phrase, "How could you deal with him? You guys are angels."

Walter (my husband) and I didn't accept the "Angel" compliment. For one thing, we didn't feel we were special. We simply were going through hell with our child, which is what any caring parent would do. We saw our son as a loving kid, which he was, who had terrible injustices done to him at an early age, and who saw the world as the enemy who he had to fight and manipulate.

We dealt with an army of people relating to helping Devon. Looking back now, I see my life would have been much easier if I had been more accepting of their judgements, even if they were wrong, which was most of the time. Some even said horrible things to us which we should do with Devon, including, giving him up.

We couldn't do that.

Today, he is a self-sufficient, happy young man, having served his time in the U.S. Marines, and just finished his first degree at a Criminal Justice school, where he works.

So how do you deal with people who simply don't understand?

You don't. You deal with your own feelings, without fighting them. You need all of your strength just to raise a special-needs child. Besides, people are seeing life through their own colored lens, and you can't stop them from having their opinions, but you can stop them from making your life miserable.

It took me years of spiritual searching to learn what I am about to tell you to make your life so much easier. This blog is dedicated to this principle. Living in the moment (Mindfulness). Living in truth.

When someone says something that aggravates you, instead of resisting them. Go inside and feel the sensation. Usually it will be in your chest, or stomach. On the other hand, you may notice your whole body tense.

This is a normal reaction. We resist what we don't want. However, this blog is about stepping into freedom, and resisting is simply holding what you don't want in place.

What advice is usually given, is to forgive and love those people. It's definitely important to do that just to free yourself from toxic emotions. However, it can be difficult to do that right away.

Try this:

Allow those feelings inside of you to come up. Don't worry. Your head won't blow off, as you may expect. Releasing that energy, (thoughts and emotions are just energy), by putting your attention on inner sensations, gives you a spacious to deal with others with wisdom instead of anger. Usually we say things we want to take back when we react to their outlandish and hurtful comments. And, when you resist, you are holding onto anger and frustration.

Just observe what is going on inside of you.

It's important, not to judge or criticize what you are witnessing inside. Don't try to interpret what you are feeling. Just "see" with your inner eyes what you are feeling. Is it a dull ache? Trembling? Movement? Does it have a color? What is the texture?

Notice how you are holding your body. Are your shoulders up to your ears with tension? Stomach knotted? Just place your attention there. Don't fall into the story of what you are feeling. Just observe.

This is Mindfulness. Being in the moment.

Your thoughts will come back, sometimes with a vengeance, and often, many times. Just stop, see the thoughts coming and going like clouds, and place your attention back on feeling the sensations.

You'll find your body relaxing, and a space opening inside of you. You won't be attached to the anger and frustrations you held onto from others.

This is a skill you can easily develop, which will give you back your power.

You will no longer be on defense with others. And, they will sense your inner peace, which they too want in their lives. You may find them asking you for advice, instead of giving it to you.

Through the Eyes of Autism: A Mommy's Tears

It is another restless night as I look through the eyes of autism shedding my own personal tears. As a professional, I have seen many cases of autism and have helped parents and teachers over the years develop strategies to help their own children. Yet I shed tears because I feel like I am unable to help my own child. I shed tears because the disorganization of autism creates a level of paralysis that no parent can deny-feelings of helplessness.

I remember when I wrote my first ezine article and I described how my toddler at the time helped me move through so many storms within life-helped me accomplish dreams that I perceived I was unable to do on my own. At that time, autism was only an "idea" but never the diagnosis. As I watched him grow over the years, I saw more signs of the disorder and even with a diagnosis at age five, I still felt like I had control of the disorder. Why one might ask? I felt like I had control over my own feelings and emotions. As time moves on however, feelings of helplessness have me paralyzed when I shed tears looking through the eyes of autism.

Two years later I now see what so many parents have stated as to why they "hate" autism. I see why they state that they wish there was a cure to autism. It is not that these parents do not love their child or are not aware about autism; it is the feelings of not being able to help one's child when the disorganization appears to take over their child's life. Things I never thought would happen (e.g. eloping) to my child has happened all because of the disorganization of autism.

So how do I move beyond the tears? Honestly, it is an uphill battle daily. I find myself trying to explain to parents of typical children that my child's behaviors are typical for him as he learns to survive in a confusing world. I remind myself that although my child is diagnosed with autism, autism will not control his life. We work hard daily like so many other parents to make the world seem less disorganized in his little mind. We love him daily and remind him how proud we are of him for just being him. More importantly as a mommy I remind myself that autism is just that, autism. However, my son will always be my son. He will always be the child that I love and who loves me unconditionally. We move together through the highs and lows of autism, but we will not be shaken into a state of fear by the disorganization of autism.

Top 5 Most Effective Autism Strategies

Autism is increasing at an alarming rate. The Centers for Disease Control and Prevention stated that the prevalence had increased to 1 in every 88 as of March 2012. While the cause of autism is still unknown, there are specific strategies that have been identified as most effective. Here are the top five most effective strategies.

1) Visual Schedules

Research clearly shows the successful results of implementing visual schedules with children. These schedules allow daily routines to be predictable, with clear expectations. Fear of the unknown causes anxiety. Children with autism or other special needs have a difficult time communicating their feelings of anxiety. Frequently this anxiety is demonstrated in negative or inappropriate behavior. Care givers must keep in mind that all behavior is communication.

Establishing and following a visual schedule reduces unexpected events or situations and assists children in predicting and preparing for transitions. Schedules themselves must be predictable. They are best as visuals, even when the child is able to read. A written schedule may be implemented later with caution and careful progress monitoring. In addition, they should be kept in the same location at all times. There are several resources and software programs that assist with schedule creation and universal graphics.

Children must be taught how to read and interpret the visual schedule. A "check schedule" transition cue is used to communicate to the individual each time he or she is to transition to a new activity. Visual schedules are effective at school and at home.

2) Environmental Considerations

Visual and auditory stimulation in the classroom and home must be taken into consideration. The classroom should be organized and predictable. The scissors should always be found in the same location. Homework is turned in in the exact same way each day. This is important in the home as well. The child's personal belongings have designated "homes." For example, a backpack is always found on the same hook. A favorite toy or book is on the same place on a book shelf.

Auditory stimulation must be examined as well. Do the chairs make a screechy noise as students move around? Is there a slow hum to the lighting? Is the fluorescent lighting too bright? Will a lamp set a different, calming mood? These considerations will vary from child to child; however, all visual and auditory stimuli must be examined. Be sure to think outside the box. Would a blue room be more calming than a yellow room?

3) Visual Structure

The environment needs to be organized visually to help children identify and comprehend what is expected of them. Color coded folders for each content area may be coordinated with the visual schedule. Clearly defined areas, such as work stations, tape on the floor, and labeled centers provide structure. This may be done in the home as well. Some examples include:

· a designated spot at the dinner table

· a visual schedule for bedtime routine

· organized dresser drawers by color and items

· specific containers for each toy

· a daily schedule for weekdays and weekends

4) Alternatives to Verbal Communication

Some children may have significant impairments in expressive communication. Current technology may be very appropriate to increase appropriate behavior and independence. The Picture Exchange Communication System (PECS) has been very effective. This is a system developed in 1985 that allows children to initiate conversation. It is not expensive and doesn't require complex equipment.

Other options include voice output communication devices. This is a very exciting area with all the latest technology and apps being created. Some devices are quite large and more durable for children who may not understand how to handle something with care. Other devices are so small they may be hooked to a belt loop for easy use out in the community.

Augmentative communication is a great strategy. However, it is important to understand the universal means of communication and ensure the device or method may be implemented with any child or adult, not just school personnel or caregivers. A back up system of communication should be available in case of a device malfunction or misunderstanding on the recipient of the message, i.e. a grocery store worker, a new student, a substitute teacher.

5) Direct Instruction of Social Skills

Many children with special needs will benefit from direct instruction in social skills. Most do not learn interaction skills by simply being placed in social environments. Social skills must be taught in the same direct instructional way as any other academic content area.

Research has shown social stories and social scripts to be highly effective. Social stories target behaviors that need to be modified or reinforced in real life situations. Replacement behaviors must also be taught. Simply showing or telling the child what not to do is not effective. Social scripts are short scripts children learn and practice. For example, everyone uses a very similar social script when greeting a colleague in the morning. Some children must be taught these common scripts.

Effective Parent Advocacy Skills

Possessing effective parent advocacy skills is not something that comes naturally to many parents of children with special needs. However, I believe learning and refining these skills is essential for the long-term success of most children with special needs. Do not be fooled into thinking that just because you live in a "good" school district that your child is getting a quality education. Based on how the current educational system works (or doesn't work) you must be an active participant in your child's education if you want them to possess the necessary skills to function in society after they graduate from high school or age out of special education at 21.

One very important advocacy skill to constantly work on developing is building positive working relationships with your child's teacher(s) and case managers. The best way to do this is to establish regular communication with your child's service providers, to show up to IEP meetings and conferences and to share your successes and failures as home. Children with special needs really need a team that works together to make steady progress.

Another very important advocacy skill is to know and understand your parental rights, also called procedural safeguards. These rights are spelled out in The Individuals with Disabilities Education Act (IDEA) and each state has them listed on their department of education website. The difficulty with these rights is that they are written in legal language, which is often hard to understand and interpret. I urge you to take the time to read the packet that should be given to you when you sign consent for your child to be evaluated for special education and every year, thereafter. If you do not understand any of your rights, either ask the case manager to explain it to you or go on-line to learn what it means.

Another very important advocacy skill to possess is the ability to stay calm and cool at meetings, over the phone and through e-mail communication even when you are angry or upset. Many people do not respond well to angry people, especially when it is directed at them. Take your time to gather your thoughts and get your emotions under control before addressing issues with your child's education, IEP or the IEP process. You are much more likely to get to a resolution that will benefit your child if you keep yourself rationale and calm than if you are explosive, accusing and/or disrespectful.

Asperger's Syndrome Concerns

Asperger's syndrome (AS) or Asperger's disorder (AD) is a pervasive developmental disorder characterized by a conjuncture of symptoms such as: qualitative impairment of social interaction, repetitive or stereotypical behaviour, activities and interests, physical clumsiness. To be noted that unlike autism, Asperger's does not affect the normal cognitive and language development of the patient.

Currently, there are several screening instruments used by pediatricians or general practitioners to diagnose a child suffering from Asperger's as soon as he/she is 30 months old. Some of these screening instruments are: Asperger Syndrome Diagnostic Scale, Childhood Asperger Syndrome Test, Gilliam Asperger's Disorder Scale, Autism Spectrum Quotient, Krug Asperger's Disorder Index, and Autism Spectrum Screening Questionnaire.

The exact causes of Asperger's syndrome are not known, however, there is enough evidence to suggest a genetic contribution. It seems that AS runs in the family, although no specific gene has been linked to the disorder. Apparently, the likelihood for a child to be born with AS increases with every family member who manifests behavioral symptoms such as: difficulties with exposure and management of social interactions and/or problems with reading or language. Other theories suggest that AS can result from prenatal exposure to agents that cause birth defects.

The first symptom of children suffering from AS is impaired social interaction. Specifically, their social behavior has been characterized as "active but odd". While people with AS may cognitively understand the concept of emotion or empathy, being able to theorize and accept them as facts, they will still not be able to show them in a social context. As a result they might come off as rude, insensitive, indifferent or annoying, although willing to engage and talk. Some children manifest what is known as "selective mutism" when they will speak only to the individuals they like or want to, while remaining perfectly silent in the presence of others.

By the age of 5 or 6, a child suffering from AS will start displaying an unusually focused interest in some activity or field of knowledge, easily memorizing detailed information or data about a narrow subject. This amazing display of memory capacity is counteracted by the fact that he/she is not able to see the bigger picture or the context of the information held. Although an AS child's interests can vary with time, he/she will still be immersed into pursuing one specific and narrow part of a subject. Also, other more or less complex body movements become highly stereotyped (flapping, clapping, head turning, pirouette etc.).

With regard to language and speech development, although no clinical delays have been reported, the acquisition and use of language is rather atypical. For example, a child with AS cannot understand a joke, a fantasy story, metaphors or figurative language in general because he/she interprets them literally.

Practical Tips To Help With Your Child's Learning Disability

The first thing to understand and embed in your system while dealing with your kids' learning disability is that you have to focus on their strengths and not on their weaknesses. They might not be able to spell as well as others, or may not know how to add up, but they may paint beautifully or may make interesting objects out of stuff lying around the house. Don't think that your kid is dumb, they are just special. Respect the difference and work to give these kids a normal life just like other kids of their age.

Here are some practical tips to help you deal with the child's learning disability:

1. Be your own expert and take charge of your kid's education: This will be that time when people from all over come up with advice and a host of suggestions. They might be well wishers. But as a parent you know better what to do. Defend your child's right to a proper education. Of course special schools can always be considered. But if the disability is such that a few months tutoring at home can bring them at par with the normal children, that's the way it should be. Try and communicate with the school of the child and talk to them about the following points:

• Clarify your goals well to the school authorities. Offer few solutions to the faculty to help your child perform better.

• Be a patient listener. Be ready to listen what school authorities have to say.

• Stay optimistic, calm and don't give up easily.

2. Understand how your child learns best: After you have figured out how your child learns best try and use them in the teaching methods. Your kid might find the audio visual medium more engaging. Get ABC learning videos or get apps on your smartphones that will help your kid write, read and draw. Sometimes the speaking skills of children are affected. That too can be corrected by these. There are hosts of material in the audio visual segment that can help with your kid's phonics understanding and interpretation. If your child is a kinesthetic learner, then there is nothing better than the field trips, model building, role playing and memory games.

3. Focus on the larger picture, think of success in life rather than success in school: Getting good grades in school is important but how important is it from a life perspective. Doing bad in school is acceptable, but reprimanding the child harshly, will probably push their success over two to three years back. So think not just academics, but that sense of self worth, the self confidence and the guts to live in the real world. Make your kid tough. Teach them to stand up for themselves and teach them to take wins and losses in the stride.

4. Encourage a healthy lifestyle: A healthy mind dwells in a healthy body. Diet, exercise, work and play, all need to be a part of the routine of your kids' daily activities.

• Exercise: Regular exercise not only keeps the body fit but also the mind. It helps in improving the mood, energy and clarity of the mind. Encourage the child to go outside and play.

• Diet: A diet that is rich in nutrients is sure to support the development and growth of the child. A diet that consists of whole grains, lean proteins, vegetables and fruits help in boosting the mental focus.

• Sleep: In case a child is not well rested their learning capabilities are badly affected. A sound sleep helps the child concentrate better.

Finally take care of yourself too. Your kid will need you for a long time to come, so be there for her. Take your health seriously; practice what you preach to her. And don't give up. A learning disability is just like any other thing, it's not invincible or insurmountable.

Could a 'Free Education for All' Dream Come True?

University education had always been, by definition, elitist. Reserved for the brightest or the richest. But in recent years, initiatives from Ivy League and Oxbridge universities have used web platforms like EdX and iTunes U to bring the experience of top flight education to eager learners across the world. Now an explosion of popularity for Coursera has taken e-learning to a new level, with 1.3million students following 200 courses, from 33 top universities. For free.

Let that sink in a moment. As the cost of a traditional degree rockets towards £9K a year in the UK, and between $27-40K in the US, Coursera has enabled people across the world to access the latest knowledge, for the cost of an internet connection.

From the 11th century beginnings of Oxford University through to the 17th century launch of Harvard right through to the 1960s Polytechnics of the UK and the Community Colleges of the US, there has always been either a barrier of academic achievement or some sort of payment required. (Not to mention it taking a good few centuries for 'being a girl' to stop being an issue). While the UK had student grants until the late 1990s, students had to at least have the A Level results to get on to a course in the first place.

Even the UK's flagship distance learning college, the Open University, has had it's subsidies wrenched away, sending module costs soaring to not far off a bricks and mortar degree.

According to Techcrunch, while the Coursera team initially had to pound the pavement looking for partnerships from America's top institutions, now the situation is flipped:

'Institutions are signing up in droves and it may not be long before Coursera's acceptance rate mimics Harvard's. Seventeen new universities have joined the startup's platform, nearly doubling the number of schools that have signed on. That means Coursera's platform now hosts about 200 courses from 33 international and domestic schools and it now reaches over 1.3 million students around the world.'

So with tuition costs higher than ever, how does Coursera do it and is it scalable to the point where, hell, anyone can get a top education for free?

Well, it got some investment cash in April this year, but that $16 million was not a gift and it won't last forever. Coursera is a 'for-profit' organisation and a few money making initiatives have been mooted, including charging students for certificates, sponsorship from businesses and acting as a go-between for students and employers.

While the number of students is growing, there is an obvious ceiling. Simply, if everyone is studying online and no-one attends the real-life Unis, those schools cease to exist and so does their contribution to Coursera. And there is one other whopping element of university life missing from Coursera: the social life. Networking and collaborating are as vital as absorbing facts and producing essays. Which is where Coursera competitor, Udacity may take the biscuit.