HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Advocating for Asperger’s and HFA Children in the New Year

Another year is coming to a close. Do you have a New Year’s resolution in mind yet? If not, how about this one: "I’m going to be the best advocate that I can be for my child."

Being a mother or father of a youngster with Asperger’s (AS) or High Functioning Autism (HFA) can be both exhausting and rewarding at the same time. As the parent, you are responsible for being your child’s advocate. Advocating on behalf of a “special needs” youngster can be both intimidating and daunting; however, armed with just a few simple “advocacy tools,” the parent’s course-of-action can run relatively smoothly.

The following “keys to success as an advocate” will show how you can become an effective activist for your AS or HFA youngster:  

1. Make sure you understand all the assessments and evaluations that are going to be – or have been – conducted concerning your youngster. Always request clarification before consenting to evaluations or when reviewing test results. Ask questions such as, "who, what, where, when, why and when" …and then listen carefully to the answers you receive. Research relevant questions, and then document responses instead of simply relying on your memory. Learn how to best ask questions, and don't come across as hostile or defensive in order to get the best open and honest replies from others.

2. Avoid blaming the people that you need assistance from, and don’t be a problem-maker. An adversarial relationship between you and your child’s educator is typically never in the best interest of the youngster. It's easy to fall in the trap of blaming others – or even pointing the finger at bureaucracy – for disappointments or a particular unsettling circumstance. But blame doesn't typically result in anything more than bad feelings and a disappointing outcome. Try the opposite approach. Keep calm, know the facts, and advocate about meeting your kid's unique needs. Propose solutions or create a possible plan that works best for everyone. Be open-minded and hear proposed solutions from the educational side as well. Being an advocate is not synonymous with being pushy and demanding.

3. Be an expert in special education. It’s good to become extremely knowledgeable about special education law. Learn the details behind the federal law that effectively created special education, now known as the Individuals with Disabilities Education Act (IDEA). Moms and dads typically have goals for their children, and families of special education children in particular should establish goals – along with a strategy to obtain them.

4. Stay positive. Celebrate what is right with your youngster. Have your youngster's teachers tailor curriculum so that the focus is about “capitalizing on strengths” rather than “fixing weaknesses.”

5. Fill out an Individualized Education Plan (IEP) for your youngster. You will be thankful you have this document, which is considered legal and binding in a court of law. Add as much information to it as possible. If it is not documented in the IEP, your youngster's school does not have to follow it. Your first year may be trial and error as you learn what needs to be included and what can be taken out. If the school does not adhere to the IEP and you have contacted them unsuccessfully, you can request a hearing. If your issue is not satisfactorily handled at the hearing, you can bring your matter before a judge. The school knows how binding the IEP is, so most of the time you will never have to request a hearing. If you find that your IEP isn't being followed, you may want to consider hiring a lawyer. The IEP should include the following:
  • Description of any modifications in state- or district-wide assessments of achievement that are needed in order for your youngster to participate. If the IEP team determines that she will not participate in such an assessment (or part of an assessment), a statement of why that assessment is not appropriate for her and how she will be assessed.
  • Statement of how your youngster's progress toward his annual goals will be measured and a description of how you will be regularly informed of his progress toward the annual goals and the extent to which that progress is sufficient to enable him to achieve the goals by the end of the year.
  • Statement of measurable annual goals for your youngster, including benchmarks or short-term objectives. These must help him to be involved in and progress in the general curriculum, as well as meet other educational needs that result from his disorder. 
  • Statement of the special education, related services, and supplementary aids and services to be provided to your youngster. This would include program modifications or supports for school personnel that will be provided for your youngster: (a) to be involved and progress in the general curriculum and to participate in extracurricular and other nonacademic activities; (b) to be educated and participate with other kids with “special needs” and “typical” children in all of this; and (c) to advance appropriately toward attaining the annual goals.
  • Statement of your youngster's present levels of educational performance, including the ways in which her disorder affects her involvement and progress in the general education curriculum. 
  • Explanation of the extent, if any, to which your youngster will not participate with “typical” kids in the general education class and in extracurricular and other nonacademic activities. 
  • Beginning at age 14, and updated annually, a statement of the transition service needs, and beginning at age 16 (or younger, if appropriate), a statement of needed transition services. 
  • Projected date for the beginning of services and modifications, as well as their frequency, location, and duration.

6. Find out what type of schools are available for your youngster, and make an appointment to visit them. Some states have “special needs” schools, and others do not. Many states have different classrooms within their school for “special needs” children.

7. Parenting an AS or HFA youngster comes with a lot of paperwork. Make sure to keep those papers neatly organized in a file or notebook. Additionally, you should always write down any questions you have concerning your youngster's care or education prior to meeting with physicians or educators.

8. Imagine that YOU are the youngster on the autism spectrum. Advocating for your son or daughter can be stressful at times, but it has to be done. Try to imagine that you are the youngster with AS or HFA. What would you want someone to do for you? Often times, thinking about the situation like this will give you the right perspective and the direction you need to become a very strong advocate.

9. Learn as much as possible about your youngster's disorder. Do your own research, attend meetings, and join support groups. Information is power, so moms and dads need to start with the facts about their youngster's disorder. Keep emotion out of it. Have fact-based knowledge from your youngster's doctors, specialists, special education experts, attorneys, educators, and anyone else who can provide information.

10. Don't just assume that your youngster’s school doesn't want to meet his or her unique needs and provide educational benefits. Most do! However, a wide range of need combined with limited resources often create the potential for conflict between (a) what reasonably can be provided versus (b) the parent wanting what she believes is "best" for her child. Moms and dads and educators should do everything possible to establish a positive, partnership-based learning approach and work collaboratively.

11. Recognize that you, the parent, are your youngster's BEST advocate. Despite the professional opinions of teachers, therapists, physicians and researchers, you know your youngster's personality better than anyone else. Don't be hesitant about calmly asserting your own views, but do so in a non-aggressive way.

12. Be assertive when dealing with physicians. If you feel something is wrong with your youngster and your physician insists there isn't, you need to take action. Request a specialist. Most physicians will give you a referral to see a specialist. There are doctors who specialize in autism spectrum disorders, and they will be more open to listening to your complaints and finding whatever is wrong. Don't discount your parental intuition.

13. Be assertive when dealing with insurance companies. Along with the physician, you are going to need to advocate for your youngster with the insurance companies. They may try to deny anything extra that your youngster needs. Don't give up. Get documentation from physicians and specialists to back up your claims. Also check with other moms and dads about what your insurance company may cover. The insurance companies won't tell you this, but you can find out by asking other parents with kids on the autism spectrum.

14. Think long-term. Moms and dads not only have the responsibility of planning their youngster's education and requirements today – they are also faced with the difficult task of thinking about the future. Be an active forecaster in setting-up your youngster's successful life down the road.

15. Questions to ponder as your child’s advocate:
  • Are you satisfied with your youngster’s progress in school and/or at home?
  • Are you tired of being told your youngster does not qualify for a special education assessment?
  • Do you feel comfortable dealing with your school officials or regional center representatives?
  • Do you feel your youngster is misunderstood at school?
  • Do you feel your youngster was assessed adequately and is placed in a program that fits his or her unique needs?
  • Do you need assistance and/or advice in your efforts to be an effective advocate in your role as parent, an equal partner during IEP or Regional Center meetings?
  • Do you need help overcoming road blocks in your efforts to gain appropriate services for your AS or HFA youngster?
  • Do you need help persuading the school to give the educators and support personnel the tools and skills to help your youngster gain benefit from the curriculum presented?
  • Do you need help securing services or placing your youngster in a particular program meeting the unique needs of your youngster?
  • Do you understand your youngster’s rights regarding education and/or early childhood intervention?
  • Do you understand your rights with regard to your parental involvement with your youngster’s program?
  • Is your youngster getting the right services?
  • Is your youngster reaching his/her potential?

Failing to be an advocate for your AS or HFA youngster is not an option. If you skip over this most important role as a mother or father, the only person who is going to suffer is your son or daughter. Get the New Year off to a great start by learning how to be your child’s hero, blazing a trail for his or her success in life.

The Aspergers Comprehensive Handbook

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