Your Rights as a Parent of a “Special Needs” Child

Most kids with Asperger’s and High Functioning Autism experience problems in school, ranging from difficulties with concentration, learning, language, sensory sensitivities, and making/keeping friends. Young people with such “special needs” are usually entitled to receive additional services or accommodations through the public schools.

Federal law mandates that every youngster 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 special needs students:

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

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

1. Section 504 is a civil rights statute that requires that schools not discriminate against kids with special needs and provide them with reasonable accommodations. It covers all programs or activities – whether public or private – that receive any federal financial assistance. Reasonable accommodations include modified homework, provision of necessary services, sitting in front of the class, and untimed tests. Typically, kids covered under Section 504 either have less severe deficits than those covered under IDEA, or have deficits that do not fit within the eligibility categories of IDEA. Under Section 504, any child who has an impairment that substantially limits a major life activity is considered disabled (learning and social development are included under the list of major life activities).

2. The ADA requires all educational institutions (other than those operated by religious organizations) to meet the needs of kids with psychiatric disorders. The ADA prohibits the denial of educational services, programs or activities to children with disabilities and prohibits discrimination against all such young people.

3. IDEA is a federal law that governs all special education services for kids in the U.S. Under IDEA, in order for a youngster to be eligible for special education, he or she must be in one of the following categories:

• autism
• learning disabilities
• mental retardation
• physical disabilities
• serious emotional disturbance 
• traumatic brain injury
• vision and hearing impairments
• other health impairments

As a mother or father, you may request an evaluation of your youngster to determine his/her needs for special education and/or related services. The evaluation may include a behavioral analysis, educational testing, an occupational therapy assessment, psychological testing, and/or a speech and language evaluation. These are the steps that parents of special needs children need to take:

• Keep careful records, including observations reported by your youngster's educators and any communications (e.g., notes, reports, letters, etc.) between home and school.
• Meet with your youngster's educator to share your concerns and request an evaluation by the school's study team. Moms and dads can also request independent professional evaluations. 
• Submit your requests in writing for evaluations and services.
• Also, always date your requests and keep a copy for your records.

The results of the evaluation determine your youngster's eligibility to receive a range of services under the applicable law. Following the evaluation, an Individualized Education Program (IEP) is developed. Examples of categories of services in IEPs include speech and language therapy, physical therapy, occupational therapy, and/or the provision of a classroom aide. The parent does not determine whether the youngster is eligible under the law; however, the parent is entitled to participate in the development of the IEP. Additionally, the findings of the school's evaluation team are not final. Parents have the right to appeal their conclusions and determination. The school is required to provide parents with information about how to make an appeal.

Moms and dads of a special needs child should always advocate for their youngster, be proactive, and take necessary steps to make sure their youngster receives appropriate services. The process can be confusing and intimidating. Here are a few important points to consider:

• If the school district does not respond to the parents’ request, parents can contact a U.S. Department of Education Office of Civil Rights Regional Office for assistance.
• If the school district refuses services under the IDEA or Section 504 or both, parents can choose to challenge this decision through a due process hearing (i.e., a legal hearing in which parents and the youngster have an advocate who can help express the parents’ views and concerns). 
• It may be necessary to retain your own attorney if you decide to appeal a school's decision. This attorney can take the school to court, but most schools that get contacted by an attorney will begin to cooperate with you. They would rather pay for your child's equipment than the cost of an attorney and a court case. 
• Moms and dads should request copies of their school district's Section 504 plan. This is especially important when a school district refuses services.

Here is a summary of your rights as a parent of a special needs child. You have the right to:

• ask for an independent educational evaluation at public expense when you disagree with the school district’s assessments
• bring any person to an IEP meeting with knowledge of the child or the child’s disability, including advocates and attorneys
• consent, refuse to consent, or revoke consent for special education for your child
• file complaints, including state complaints, due process complaints, and disagree with parts or all of the IEP
• list all of your concerns in the IEP
• participate in the IEP meeting and have your opinions heard and noted
• receive prior written notice when the school district proposes a change in your child’s placement or refuses your request
• request a new IEP meeting be held within 30 days of a written request when an IEP is already in place
• request that your child be assessed for Special Education without delay
• review and receive copies of your child’s educational records

Kids on the autism spectrum who have “special needs” can't take care of themselves. They rely on their moms and dads to make sure they are protected. It can be stressful and difficult for parents if they don't know what their child’s rights are – let alone how to protect him or her. Parents can follow the steps listed above to protect the rights of their youngster.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book


==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

COMMENTS:

•    Anonymous said... My son needed big help with social issues at school, I ended up writing to the Minister of Education, Hon Anne Tolley at the time, only after her and Chester Burrows getting on board did I get help by our GSE. Then the following term the RBLT removed him from her books saying he was fine. Changed schools and the next school was brilliant.

•    Anonymous said... This is a very good article. Pay close attention to the keeping records part. You will have to fight for it. The school will want to collect "data"...so keep records of everything. If your school has an online program so you can look at your kids assignments and grades, print out the assignments and grades after every semester/quarter. Having that in my hand and pointing out that my child made all "A"s" when she did the work, and "F's" only when she didn't do the work (which was often.... any time she thought it was a stupid assignment, involved a lot of writing or she thought she couldn't do it perfectly) helped me finally get the 504 and some very needed accommodations. Be persistent, be a bitch if you have too, but stay on them. They have to respond to your requests in specific number of days, but often won't. Stay focused and know the prize will make a difference for your child!!

•    Anonymous said... We have a 504 for my daughter! Soooo helpful.

Please post your comment below…

How Important is a Diagnosis?

If you suspect that your child has ASD level 1 (Asperger's), even if he or she is an adult, should they seek a formal diagnosis?

Answer: It depends!

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

Making Your Child's Bedroom More Conducive To Sleep

“Our 5 y.o. boy has been diagnosed with autism (high functioning). Any suggestions on how to make his bedroom more favorable for sleeping? We have been told by the therapist that he may be over-stimulated by the digital gadgets, toys, games, etc., in his room – and that these items are distracting him from falling asleep. This is a plausible theory, because he will get out of bed late into the night to play around. Also, he is easily aroused by the slightest noises through the night.”

It is important that the bed and the bedroom are associated with sleep and are not associated with activity. When young people with High-Functioning Autism or Asperger’s have sleep problems, it is highly recommended that their bed and bedroom activity be limited to sleep only. Also, it's important to make sure that extreme changes in temperature are avoided during the night.



Increasing light is associated with decreases in the release of the neuro-chemical melatonin, which triggers sleep onset. Thus, it is important to get the sunlight flowing in the child’s room as soon as possible in the morning. Conversely, darkening the room at night is critical. When a child’s fear of the dark is an issue, behavioral psychotherapy may be necessary. I also recommend moving the clock so that the child is not watching the time while lying in bed.

Here are a few additional suggestions that will help facilitate a good night’s rest:

• Cool colors (those from the left side of the color wheel) are thought to provide a sense of calm. Choose one of these for your child’s bedroom, and avoid bright, loud colors that are more exciting than soothing.
• If your child needs a little light to sleep comfortably, consider adding a couple of nightlights or a dimmer switch rather than having him sleep with a lamp on all the time.
• Loud pipes might be keeping your child awake when one person makes a bathroom visit in the middle of the night. Look for the cause of any clanging and banging, particularly in a bathroom that may be adjacent to his bedroom.
• Make sure doors and windows are solid and secure, with no drafts or rattles. 
• Make sure that rooms adjacent to your child’s bedroom are not home to stereos, televisions or other noisy electronics. Most modern homes don't have completely soundproofed walls, and the bleed-through noise may be keeping him awake.
• Organize closets and keep your child’s clothing and other personal items in their places. A chaotic, messy room is stressful to the mind. 
• Select light-blocking window treatments. Even though the sun isn't out, plenty of light can sneak into the bedroom from outside, disrupting your child’s sleep patterns. 
• Use an air purifier or humidifier to keep air quality at its best. Allergens and excessively dry air can interrupt a child’s sleep and make waking up unpleasant, too. Also, many machines create a white noise that drowns out other distracting sounds, which is often very appealing to children on the autism spectrum.
• One mother suggests the following: "We also used either a sound machine (played nature sounds) or a CD with relaxing instrumental music to help our son get to sleep or stay asleep. That seemed to help reduce waking up from other people moving around after he went to bed." 

As a side note, many parents report that Melatonin (a hormone secreted by the pineal gland which has been shown to regulate sleep patterns) has been highly beneficial in helping their child with sleep difficulties.  For kids on the autism spectrum, the patterns of melatonin secretion may be irregular, so it is not that they don't produce it, but that they don't produce it at the right times of day. 

More resources for parents of children and teens with Asperger's and High-Functioning Autism:

==> Preventing Meltdowns and Tantrums in HFA Children

==> Discipline for Defiant Asperger's and HFA Teens

==> Teaching Social Skills and Emotion Management

==> Parenting Children and Teens with High-Functioning Autism

==> AudioBook: Unraveling The Mystery Behind Asperger’s and High-Functioning Autism