AUTISM. Advocating your child’s EDUCATION.

AUTISM. Being your child’s educational advocate.

It’s that time of year again where parents will meet with their school districts to write their Individualized Education Programs or IEP’s. These are mandated by the Individuals with Disabilities Education Act or, IDEA laws. My ‘other mother,’ (who has her Masters is Education), told me, “if every parent knew their IDEA laws, the school systems would go broke.”

As the parent/ caregiver of a child with Autistic Spectrum Disorders, ASD, you will need to be an educated advocate in many areas of his life. Picking up, reading and understanding the IDEA fundamentals from a recent copy of, “Wrightslaw: Special Education Law,” will make you an invaluable resource for your child. There is no excuse for being unprepared for these meetings which will determine in great part your child’s ultimate functionality and success.

I recently read about a mother whose argument with her school district was, in part, in reference to her son’s handwriting. A recent Japanese study involving middle and high school aged children advised on this subject. The findings showed that kids with ASD, but more specifically, Tourette’s Syndrome, ADD, ADHD with hyperactivity and other co-morbid diagnosis, would have substantially lower grades when forced to hand write their assignments. The implementation of computer keyboards and typing devices raised their grades from C and D averages to A’s and B’s!

Further, studies have shown that by allowing these affected students to complete homework assignments at school and NOT in their ‘natural,’ or home environments also had significantly higher grade results.

Parents/ caregivers who come prepared are a far stronger force than most realize. By law, the parents/ caregivers are never to be excluded from these importantdecision making meetings. You have the right to be heard and understood. Your home research and knowledge will prove to be invaluable. Even the simplest of rules, like knowing to use the verbiage of ‘accommodating and appropriate for your child’s diagnosis and ongoing therapy,’ will keep the systems from finding loopholes to refuse services. Knowing when a transfer to another school or district is allowed is extremely important. Each state has its own interpretations of how and when they are willing to transfer or contract out for appropriate services. Knowing these rules will keep you from spinning needless wheels while showing your school administrative team that you have done your homework and know your child’s educational rights.

My oldest son has a 504 plan which is not as powerful as an IEP, but certainly provides for ‘appropriate accommodations.’ His 504 plan includes having no HOME work, the use of a keyboard instead of handwriting, allowing for quiet time, allowing for frequent small healthy snacks to keep his constant high energy from wearing him down and even a rest outside when his anxiety is peaking. These things can all be a mandatory part of your child’s program but will rarely be offered. I even learned to bring in a supportive advocate at times when I knew it would be a ‘battle.’

If the system does not provide, they MUST accommodate. Test scores and specific diagnosis are the baselines for constructing a plan that will be therapeutic, stimulating and educational for your child’s special needs. The IEP’s and 504 plans also offer greater protections than those of typical students.

If the plan your child has in place does not seem to be working, you can always call for another meeting even if the next scheduled one is months away. Stay on top of this critical part of your child’s life and KNOW what you can and cannot do and/or ask for.

In my Autistic son’s first meetings, I walked out because the offers were neither accommodating nor even reasonable. A school district Occupational Therapist began coming to my home for 20 minutes once a week. I was already seeing a brilliant OT privately and had worked through the majority of occupational and sensory issues. My son needed speech. This was his diagnosed and obvious primary area of delay and disturbance. She gave me a copy of Baby Einstein which would have actually have been detrimental and I showed her the research to justify this. I then went on to show her my collection of ‘Prescool Prep’ and ‘Baby Bumblebee’ highly accredited ASD DVD series. She asked me to make copies for the other 3 children affected with ASD in the district! This would have been illegal. To make matters worse, she always replied,  (when I repeatedly requested that a speech person should be coming to my home); “he’ll get speech when he turns 3, it really won’t matter.” Since 70% of a child’s learning and language foundation is finished by the age of three, I knew that not only did his lack of having appropriate speech therapy matter, it was CRITICAL. I immediately called for a new IEP meeting when I realized she was, in my opinion, completely without any Autism Awareness. A degree not backed by ongoing research carries little or no merit in any area where ongoing research is being performed.

Your leverage is the laws and the fact that a child with Special Needs is worth as much as double and triple the tax monies as the funding for a typical child should put you in a position of empowerment not groveling.

In an instance that I can personally speak from, for a curricular school year, (September-June), a typical student brought an award to the school for $5,000. A student on a 504 plan was worth approximately $8,000. A student with an IEP at early Intervention age brought the district a whopping minimum of $14,800 or three times the amount of a typical student of the same age. Their offer to have the schools OT visit my house for 20 minutes once a week and no speech therapy to a severely speech delayed son was unacceptable.

I continued to battle until he finally was allowed to attend school 2 times a weekwith a speech teacher. The teachers, though kind and well meaning, did not have the educations, Autism studies , programs or even tools to make an accommodating and proven difference. After 14 months of battling by trying to transfer to another district or contract out for services which allegedly they MUST accommodate but were not, I gave up. I was in the 48th worst state for ASD resources and I knew that I had to do better for my son.

I moved to New York where my son’s IEP would finally be written to accommodate his special needs. With New York’s 5 day a week speech program, with a speech therapist fully acquainted with current Autism research and cutting edge therapies, (and every other imaginable accommodating resource),  my son went from mumbling and to a greater extent, ‘speechless’, to fully conversational in 2 months.

He began playing board games, speaking, (though very impaired), making eye contact, singing, dancing and HAPPY in only 2 months. I was completely in awe of the provisions given to my son in New York State. I was also in disgust of the state I came from.

If I had to pay out of pocket in my former state for the services he was receiving in just the curricular year, it would cost in excess of a half a million dollars! By the time my son has finished his two years of Early Intervention before starting Kindergarten in NYS, he will have received well over a million dollars worth of therapy. I did not have to beg or battle, these services were given to my son on a silver platter.

Had we not moved, my son, (as a child who would not have received appropriate and accommodating therapy), would have cost taxpayers anywhere between 3.7 and 77 million dollars in his lifetime depending upon his assisted living, medical, educational, personal and therapeutic needs. So, who is short sighted? The 42 states that do not provide appropriate services are.

If I didn’t know the laws I wouldn’t have known what he could and should be getting, though the verbiage does say the initial school district MUST accommodate. It’s despicable and injurious that so many states allow for this. A fellow parent of a child with ASD in the state where I was has sued the school systems there at least 4 times, and won each time. The schools still did not change and are still not accommodating.

Clearly, knowledge and leaving the door open to move are essential. In many cases, even just a move to another county will make the difference. In other cases like mine, moving over 3,000 miles away did the trick.

Remember, stimulus monies are given to the schools according to your child’s diagnosis and anticipated needs…not for what they are actually providing! This allows school systems to ‘fly under the radar’ by offering substandard and sometimes ridiculous individualized educational programs. If you don’t know what your child needs and what you can and cannot ask for, in most cases they won’t tell you either. Therefore, you need to be prepared.

For early intervention, I strongly advise parents to look at the SPICE program atElmcrest in Syracuse, NY. Their programs not only provide and accommodate ASD and other special needs, their success rates are unparalleled. You don’t have to battle, they automatically provide and offer far more than most caregivers could ever imagine. SPICE has a resident Social Worker to help gain information and hands on help with acquiring community and/ or State services. They even have a resident ‘Mary Poppins’ with her master’s degree in Play Therapy. ‘Learning through play,’ and Board Certified ABA are pivotal in the treatment and healing of ASD. The results of this program, designed and run by Dr. Leah Phaneuf, PhD, speak for themselves and should be used to not only provide a blueprint for all early Intervention programs related to ASD, but it can be used by you when battling for your child’s IEP, no matter where you live.

The very basics you need when comparing programs begin with:

The need to know your child’s individual special needs and IDEA lawswhensearching for an appropriate and effective school program. Many head start programs are beginning to accommodate the early intervention needs of a child with ASD. Each program is unique, and each teaches a child with ASD in different ways. When deciding on a school, consider the program’s emphasis on:

  • Social interaction with both other children with special needs and with typical children. Children with ASD mimic. Inclusion with typical kids provides that your child will have appropriate behaviors to copy instead of other behaviors associated with ASD.
  • Family involvement, which does mean you. As the great Beth Wilder, OT, said to me, “even the greatest therapist or therapy would have no effect without the continuity and continuation in the home, or ‘natural environment.’ Since the Board of Pediatricians has stated for years that a child affected with ASD MUST receive 40 hours a week of Board Certified ABA for at least 2 years. This means you will have to be closely following the techniques and routine patterns which are used in the school. If your child’s school program does not include classes and/ or some form of training for you, then find another or battle to be trained yourself.
  • Range of activities. Not every child with ASD is the same. What works for one child may not work for the other. A wide array of activities ensures that each child’s niche(s) will be discovered, accommodated and realized.
  • Structure of environment. A Board Certified ABA Therapist at the helm will guarantee that your child’s daily and overall plan will be structured with a correct mixture of teaching, therapy, play, routines and other special needs.
  • Curriculum is key. Children with ASD can learn everything typical children learn but they must learn it differently. The ‘techniques and curriculums may differ program to program.
  • Collaborating with other services student receives (i.e. counselors, doctors, etc.) In the instances where a child’s specific needs cannot be met within the school program, it may be necessary to contract out for a provider to see your child privately or be brought into the school. Issues like potential hearing, vision, speech apraxia and so forth typically require appointments outside of the school.
  • Appropriate therapies typically include but are not limited to, occupational therapy, OT, speech and language pathology, SLP, physical therapy, PT, play therapy, sensory integration, SI,  inclusion with typical children, art and music programs and most importantly, Board Certified Applied Behavior Analysis, ABA.
  • Teacher to student ratios are critical and you can at the early intervention ages, ask for a 1:1, or chaperone, (sometimes known as ‘shadow’), for your child.

Be prepared. Your child’s diagnosis of Autism has changed your lives forever. Getting accommodating therapies from the school systems will typically ensure that your child realizes his ‘high functioning’ ASD potential and will avoid falling between the cracks.

Your life as you knew it has changed. Knowledge of the IDEA laws will enable you to be an excellent advocate and resource for your child’s growth, future, functionality and successes.

Welcome to Autism.

SHARE+CARE=AWARE! -C.A. Curie


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36 comments on “AUTISM. Advocating your child’s EDUCATION.
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