How To Get Other Family Members To Accept Your Child's Diagnosis

"I'm a stay-at-home mom. My husband works out of town and is only home on weekends. My question is how can I get my husband and in-laws to accept our daughter’s diagnosis? They claim I am just 'making this up' and that it's really a behavior problem with her – not a 'disorder'."

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High-Functioning Autism and Associated Disorders

“We’re in the process of having our son assessed for high functioning autism. We’ve had numerous problems in the past that have brought us to this point. The doc said he believes our son may have several ‘comorbid’ conditions as well. What does this mean? What other ‘conditions’ might there be?”

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Why does a child with Aspergers have a short attention span?

Kids with Aspergers frequently exhibit problems associated with other special needs (e.g., attention problems and obsessive/compulsive disorders). Researchers and practitioners are unsure whether these behaviors are a part of Aspergers or are comorbid, (i.e., related) disorders.

The characteristics of Aspergers include difficulties in social communication, sensory problems and organizational difficulties. All of these combined will certainly affect their ability to sustain concentration for any length of time.

For example, a room may be too bright, noisy, too many pictures, etc., which are all distractions and high stimulation. This means that certain sights, noises, tastes and textures can bother a child more than they would a child without Aspergers.

Aspergers kids will often not fully understand what is being said to them and will often misinterpret crucial verbal and non-verbal information. They also find it difficult to give consistent eye contact as this sometimes interferes with their ability to take in new information.

Individual Education Plan for Aspergers Children

Question

How can I get help in obtaining services that are supposedly out there and available? My son’s ISSP (IEP) looks fantastic on paper, but in reality, most of the services are not obtainable due to extremely long wait lists or shortage of workers to completely fill the positions.

Answer

Developing a relationship with your son’s school and creating an acceptable IEP, or Individual Education Plan, is very important. “How Well Does Your IEP Measure Up?” by Diane Twachtman-Cullen and Jennifer Twachtman-Reilly is a book that can help you grow to be a valuable member of your son’s IEP team, giving you insight into the IEP process. You’ll learn about often-neglected areas that should be addressed during the IEP meeting.

Your son’s school has obviously been cooperative, working with you and acknowledging his disabilities. However, without follow-through, all you have is a stack of papers. By law, your son is entitled to FAPE or a free, appropriate public education due to his diagnosis of Asperger’s Syndrome. His IEP is a legal document. Your son’s school is legally responsible to uphold the contents of his IEP. There are procedures in place to protect all parties involved in the education plan. However, someone has to initiate these procedures.

At the time of your son’s IEP meeting, his IEP team leader should have reviewed your state’s laws and your rights as a parent of a child with special needs. You should have been given a copy of your state’s FAPE procedures and parent’s rights handbook. Now is the time to review this handbook and determine your first step.

You must initiate a legal procedure called due process. Once you file due process, you will have the opportunity to show proof that the school system is not fulfilling your son’s services as set in his IEP. Your parent handbook will outline the steps you must take to begin due process in your state. You, as the parent, are responsible for holding the school system accountable.

Preserving your relationship with your son’s school is very important. Even if you file for due process, your son will remain in their care until the process is resolved. You will want to be comfortable with this arrangement. Remember to maintain neutral communication. While this is a personal matter in your life, this is not a personal attack. Moreover, it doesn’t have to become one.

Contact your state’s special education advocacy support group. This group is in place to support the families of special needs kids by offering information and advocacy training services at no charge. This group can guide you through the legal process of receiving FAPE for your son.

Aspergers Students: Navigating Through the Educational System

"Please give me some ideas on how I can work with my son's school (he is high functioning with Aspergers). We are starting to have some academic and behavior problems with him, have tried to educate his teacher about things that set him off and calm him down, but no one seems willing to try anything different, treating our son as though he had no special issues."

If you are wondering how to navigate through the system in order to get your Aspergers (high functioning autism) youngster educated you are not alone. Our kids don't fit so neatly into the main stream educational system. They are often too high functioning for some programs and still need more assistance than other programs offer. While they are in desperate need of socialization, too much is often detrimental. One on one for academics is perfect but does not provide enough stimulation and a classroom environment is just the opposite. The first step is to look at all of our options without leaving any out, even the ones we absolutely reject right off the bat. Taking a good look at every option, the good and bad ones will give us the education we need to come up with creative solutions.

Gather as much facts about every option. Public Schools, private schools, home school support schools, home schooling at home, public online virtual schools, private online virtual schools and of course the laws in your state. Ask every question you can think of. The squeaky wheel gets the grease. Ask around, look online and don't let fear rule your decisions. With all my heart I wanted my son to go to the school that was attached to my home church and fear kept me from looking at other viable options for much longer than was necessary.

Leave yourself open to new ideas. My son went to private school till 5th grade. It was absolute torture trying to keep up. Finally when it became obvious that it was no longer working I decided to home-school. It has been a fabulous experience for us both and I wish I had been brave enough to try it sooner. I purchased curriculum, set up schedules and after about a month I put it all in a box and started to concentrate on the things that my son needed most and we worked on those. I went from traditional to eclectic lickety split. I found online games, videos, typing programs, online spelling programs, vocabulary software, online reading programs and we worked on things till he learned them, however long it took. We took piano lessons, art lessons and swimming lessons. We spent 6 months on Math facts. On days that one thing wasn't working we switched to something else. Life is too short. As a result my son reads wonderfully and loves to learn. That was middle school. During that time we also found a wonderful home school support school.

Now that he is starting High School he is taking some classes online and going part time to a nearby Christian High School. Technically he is still homeschooled so he will also be attending a Home School support school. At some point we will use an umbrella school to consolidate his High School Credits in order to get a High School Diploma or he may graduate from the High School he is attending. Every year is different and I have learned to always have a plan A, plan B & even a plan C. These days though I am certain that it will all come together. Fear no longer rules my decisions.

Tips—

1. After getting the facts, think over your options carefully and talk them over with carefully selected people who are sensitive to your situation. I often use counseling services when I get stuck on the tough decisions. Remember: If you have a plan A, a plan B and a plan C it’s easier to move on if something doesn't work out like it seemed it might. Allowing ourselves to think out of the box has been a freeing experience.

2. I am always careful to explain any changes with my son well in advance and prepare him for each transition as best as possible. I also try to anticipate anything that may cause him anxiety or that needs to be addressed a head of time. One example is I always show him around any new setting to make sure he knows his way around very well and knows who to ask if he needs help. I check in often to make sure he is settled in and make sure I am available if I am needed. My son is a special gift to me and I never take that gift for granted.

3. Obviously every option is not right for everyone. That is why it is so important to get the facts not only about your options but the facts about your families strengths, weaknesses, resources and support options.

COMMENTS:

•    Anonymous said… Awesome! We are on much the same journey... 5 years in therapeutic schools and finally having the courage to listen... and on year two of homeschooling. It's been a blessing for us all as we grow and change and learn... anything is possible! Not perfect - but better! Thank you - this was exciting and encouraging to read. :) Peace!
•    Anonymous said… great article... we are on much the same journey t midde school part.thank you! :)
•    Anonymous said… Homeschooling successfully...
•    Anonymous said… I got the school to provide my son with the work and a tutor to do homeschooling to take some of the pressure off of me but they only tutor him an hour a day and he is going into 6th grade so I still need to work with him a few hours a day.He has begged me not to send him back ..he hates it.The pyschologists disagree with me and think he needs to be in school for social ization but I think the type of socialization in school is usually neagative anyway so he's not missing anything. I am going to put him into a social group with kids he can relate to.But back to the topic ,I was in the same boat with schools saying he needed to be in the mainstream classroom since he was so intelligent…but its not just about intelligence,what about his anxiety and sensory issues...they just don't get it and don't want to either:(
•    Anonymous said… I had to yell beg scream and cry for 4 years to get my son an IEP... even failing all his classes for the same exec function disability reason for years didnt get the point across .... *sigh* "but he is so smart"..... yes and he forgets everything including his coat even in -20 degree weather .... he needs help... *sigh* a very long bitter battle to finally get him the services he was entitled to for years. hopefully not too late to do some good .
•    Anonymous said… thinking we will do home schooling,
•    Anonymous said… We're homeschooling too
*   Anonymus said... Hopefully you have an IEP for your son. If not obtain this and ask the person doing the screening to include things that help your son behaviorally. If you have it down on paper, from a professional, sometimes it helps. I'm a counselor (my husband is a teacher) and we have a child on the spectrum but even with all our skills it took FOREVER to get the school to understand that children on the spectrum need different things. When we finally got their by in things started to change slowly, but it takes extreme patience (baby steps too), and good understanding from administrators (tolerance for children with special needs). Get everything down in writing when you suggest something to the school. This helps for follow up and just keep plugging away. When our child went to that school district my good friend and I we would utilize each other to bounce ideas, letters, and strategies off of each other before sharing them with the school district. If it weren't for her there were days that would have been tougher! So try to find others in the district that are in the same position as you are and work together. There is power in numbers. Good luck! We ended up moving when things were getting better and are in a district that is COMPLETELY different. It is so validating!

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Symptoms and Treatments for Aspergers and HFA

There are various symptoms that can be seen in a youngster with Aspergers (AS) or High Functioning Autism (HFA). Parents can use a checklist to closely observe their kids when they are fairly young. Children on the autism spectrum:

• often lack motor skills
• often speak in an odd tone or pitch
• adhere to routines and have repetitive habits
• have difficulty interacting at a social level
• are often unable to make a coordinated plan
• fail to get the undertone of a speaker
• have difficulty empathizing because they have a hard time understanding the feelings of others
• have narrowed interest fields and are often focused on one particular subject or topic

There is no treatment for AS or HFA as such, but there are many ways in which a parent can help his or her youngster to cope with this disorder. Often times, there is an additional disorder found in the child, which worsens the situation. Fortunately, medication is used to help the child deal with these comorbid conditions.

There are several medicines and therapies that have been discovered so far that help to control the symptoms of AS and HFA as well as comorbid conditions (e.g., ADHD, anxiety, depression). Certain medicines are prescribed by the physicians to bring ADHD under control; however, many of them show side effects such as twitches, trouble sleeping, loss of appetite, stomach aches, and  headaches. Fortunately, most of these side effects subside within a few weeks.

There are programs conducted in various schools that help the youngster by training him and helping him understand social cues and non-verbal language. In these training sessions, a communication specialist can always be brought in to help the youngster with social communication and social interaction skills. With proper training, these "special needs" kids can easily learn about the social cues, which is often taught in a way that one is taught a foreign language. They can also be taught to speak in a natural pitch and rhythm, and they can be trained to understand the various communication gestures like tone of voice, undertone like sarcasm and irony, eye contact and much more.

There are certain behavioral training procedures and therapies that have been adopted in order to train kids on the spectrum when it comes to behavioral disorders. These therapies help to curb such habits as interrupting, obsessions, anger and other emotional outburst. Cognitive behavior therapy appears to be a very effective method for changing unwanted behavior in AS and HFA children and teens.

Why do Aspergers kids behave in an obsessive manner?

It is very common for a youngster with Aspergers to become fascinated by a special interest that dominates his time. It is important to recognize what the fascination may provide for this youngster before attempting to eliminate it or control access to it. The fascination or obsession may provide the order and consistency he craves. It may also provide a method of relaxation.

Rather than try to eliminate these altogether (which is almost impossible), create a plan that uses these unusual interests as a reward for completed tasks. For example, if you ask the youngster to complete a task that he is familiar with and in which he can be successful. Then give him time on the interest as a reward. This way your kid will learn to manage and control the obsession better.