Living with Autism!

Arek has just finished his first week back in school. It is a strange mixture of feelings of sadness and happiness when our children go back to school. We miss the daily treasures of being around them like the random babbling  and spurts of uncontrollable laughter. It is so wonderful to see the absolute amusement and joy in Arek’s eyes when he sees the bus coming down the street. The first day of school it was almost an hour before we got him dressed and after much protest, when that bus pulled up the smile and words ” go to school” were worth it.  Now every morning Arek just smiles and says “cereal” and ” need clothes” followed by “go to school”. Coming home from school he says “goodbye” to the bus. there was a time living with Autism not so long ago when we did not think we would hear Arek speak at all. Now he speaks enough that we are able to at least make out what he wants most of the time. This year Arek is in pull ups as he hasn’t completely graduated to potty trained status. he will go number 1 most times on the potty but number 2 just for some reason scares him. Hopefully between school and home we can conquer the number 2 and he can graduate to potty trained. His teacher says he is a pleasure to work with and we are looking forward to watching him progress throughout the year. We will keep you posted.

The national Autism Association finished a campaign asking a simple question How much longer until autism gets the attention it deserves. The president in his speech on health care mentioned the H1N1 or swine flu as an epidemic. He failed to address the Autism epidemic which has been years in the making and seems to be increasing in severity.  According to a recent survey by the National Survey of Children’s Health (NSCH), with support by the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services, Autism Spectrum Disorders now affect 1 in 100 children. The campaign sent out 8 different ads have circulated over the past 6 weeks. This campaign was not like most , the campaign was rather rebellious and harsh at times. They actually call out the National Institutes of health for not focusing more funding toward environmental causes of autism. The campaign calls out the Dept. of Education for their slow response to the abuse and even death of special education students in our schools. This campaign is over now but it is never to late to contact your congressmen. The campaign sent out over 50, 000 letters to President Barrack Obama and others by September 9th.

Arek has lost his first baby tooth and we believe he swallowed it.  about a week ago Arek started saying his teeth hurts.  We were surprised to see his tooth was loose. He wiggled it around but not as much as we expected. Having Autism and sensory issues he is prone to obsessively play with things. We are so excited he is actually talking so well. when his tooth fell out Arek told us that we need  to get a new one. He is so sweet we told him a new one would grow.

The (I.E.P.) Individualized Education Program is a very important document for the education of your child. An IEP is required for all children who are eligible for Special Education. The IEP is determined through a team effort and must be reviewed at least once a year. In order to have an IEP written, your child must be eligible for Special Education. According to federal law, A multidisciplinary team must determine that:

1.     Your child has a disability

2.     Your child requires Special education and any related services to benefit from the general education program.

IDEA (Individuals with Disabilities Education Act) is a federal law that requires certain information to be included in the IEP. Different states and local school districts may have additional information; forms differ from state to state and will vary from school district to school district within a state. It is recommended that you find out your specific state laws from your actual state resources.

IEP Team Members:

1.     The parents who provide insights that only you the parents can about your Childs strengths and weaknesses. Make sure to give your ideas about your Child’s education.

2.     The General Education teacher(s) who can provide information on what is expected and your child’s ability to meet expectations.

3.     The Special Education teacher, who will be providing services to your child, preferably has training and experience in teaching individuals with disabilities. They work with the other teachers to plan modifications to your Childs education.

4.     The school districts Special education coordinator who has the authority to commit resources and services.

5.     If needed a person to explain the results of your Childs evaluation.

6.     Any experts such as therapist, psychologists etc… That may be invited by you or the district.

7.     When appropriate your child.

The IEP

The IEP is not a contract but a guarantee of the necessary services and supports that have been written and agreed to for your child.

The IEP must contain at least this information:

Current levels of Performance

All information about your child’s strengths and weaknesses are presented by you the parents, teachers and any school personnel who evaluated your child. Results of the various tests are reviewed. Included are state, district, and individually given tests. Concerns such as language development, social skills or behavior should be discussed, as well.

Goals

Goals are established that are measurable and can reasonably be accomplished by your child in one year’s time. The goals should be based on your child’s present level of performance and address their needs resulting from their disability. Goals must help your child progress in the general education curriculum including academic, behavioral, social, self sufficiency and any other education needs. Goals are not geared toward maintaining skills or reaching above grade level performance. Law states that a child’s IEP must have “a description of how the child’s progress toward the annual goals … will be measured and when periodic reports on the progress the child is making toward annual goals will be provided”.

Special Education and Related services

The school districts obligation is to provide your child a (FAPE) Free Appropriate Public Education in The Least Restrictive Environment (LRE). The team determines how to give your child the most appropriate education with or without students who are not disabled. Special Education is the services your child receives not the actual place they receive them. Depending on your child’s needs there are a few options including Special Education classrooms and General education classrooms with aids.

Also included in the IEP are:

1.     To what extent your child will interact with disabled and non-disabled children in the school.

2.     If your child needs aids to take state and district tests or take different tests altogether.

3.     When, where, how often and how long services will begin and continue

4.     Any necessary transition services needed when the child turns 16.

5.     Supports and methodologies for behavior management if your child’s behavior interferes with their learning or the learning of their peers.

6.     Communication needs

7.     Special modifications in the educational setting.

8.     Assistive technology if needed to receive a FAPE.

9.     Language needs if your child is not able to speak English

Parents role at the IEP meeting

I know personally the first time I attended an IEP for my daughter I was scared and nervous and overwhelmed to say the least. Sitting there with all the teachers’ experts and the like, I basically just shook my head yes like I was child myself. You cannot do that! Here are some ideas to help you participate more effectively in the IEP meeting.  

1.     Try to keep in contact with the child’s educators so you have a better idea of what to expect from them at the meeting. I recommend sending a notebook to school and asking it be filled out every day with some info on how your child did that day.

2.     BE PREPARED! Yes I am yelling it is so important. Write down any thoughts, ideas or concerns you have. Stay focused on the main issues your child has. Any information you provide should be included in the IEP.

3.     Bring someone with you preferably your spouse or significant other. A friend or family member. You need a support system also.

4.     There are no stupid questions. Ask questions if you don’t understand something. They have to make sure you understand everything and must provide an interpretation to you.

5.     Do not let emotions take control of the meeting. If emotions become an issue stop the meeting and try to continue at another time. Emotions can get in the way of an effective IEP and only your child suffers from that.

6.     You should sign to show that you participated in the meeting. You still have the right to disagree with the goals of the meeting if you need to take the IEP home for review and modify it later.

IEP’s are reviewed at least once per year. If you or the school district feels the need for a meeting sooner it should be requested in writing. It is your right to withdrawal your consent for services but should only be done if you have been recommended by a legal advocate.  That is the basics of an IEP and the meeting involved. Below you will find some links for further information.  I have also provided links to books that are highly recommended.