The Oregon Trail - with a special needs child

diagnosis: AUTISM

The first mistake we made was dividing up our family duties. It seemed pretty logical and seemed like the only way that we could pull all of this off. I concentrated on Bradley, running his Applied Behavior Analysis program and dealt with our dispute with the school district. My husband concentrated on the other three kids, the homework, the games, Dr.'s appointments, grocery shopping, etc. It didn't work, it only divided us. The most consuming of course, was the dispute (to put it lightly) with the school district. It turned into an "I" thing instead of a "we" thing. I resented him not doing more in this department and he resented my spending so much time on it. What we realize now is that it would have been better to remain team members than to become co-workers.

I stopped by a friends house last night, just to say "hi" and we ended up talking for hours. I left with a whole lot to think about. Here is one analogy that she shared with me: When a child jumped off a covered wagon on the Oregon Trail, the wagon did not stop... it kept on going. This doesn't mean that one or two did not go back on horses to retrieve the child. It just meant that the wagon kept on going no matter what, for the good and survival of the group as a whole. So, when advocating for your child it is important to let the wagon keep on going. Don't stop the family wagon for your child with a disability. The family is the foundation and must remain stable.

Do as much as you can without stopping that wagon, for the good of the entire family. In our case, we saw stopping the wagon to be a temporary thing. :o) This is where we made our second mistake.

Autistic child has been a gift from God

I have had the opportunity to speak with many parents of children with autism. As a parent myself, I can relate to the issues surrounding having a child with a disability. As parents, we are challenged with some very difficult decisions pertaining to our children and their needs. Somehow we find ways of pulling through the most difficult of times. My child has given me strength. He has given me hope, courage and faith. He has further defined love, joy and success unlike ever known to me before. He is my gift from God for which I am forever thankful.

At What Point

The moment you were born, I promised you what I could. That you would be allowed to be yourself, no matter where you stood.

As my thoughts are absorbed with you, pondering to myself, and wondering when did I break the promise that I once dealt.

Do I want for you to be more than you are meant to be, or do I allow you to be yourself, for you and not for me?

Dreaming the dreams I have for you, but only in my selfish bliss, and searching through the stars without knowing what to wish.

At what point do I say to you, you are the finest you can be; please don't change a bit because you are perfect to me?

At what point do I relish in all the things that you've achieved and say goodbye to that little boy, the one I wanted you to be?

At what point do I change my dreams to accommodate you better? Just take my hand and come with me, because we can dream together.

I love you, Bradley.

Inclusion is more than being included

Inclusion only works if it's done right.

The fact that the term "inclusion" even exists is proof we have a long way to go before achieving equality for those with disabilities. To me, inclusion goes well beyond the classroom and least restrictive environment. Inclusion can make a difference in all aspects of a child's education and life.

Special education was meant to be a service, not a place. The same holds true for inclusion. To simply place a child with his-her peers is not enough, it is only part of the service. Without needed supports, the child will not receive the educational benefit they should. Some districts in the state fully include the majority of their special education students. This can be problematic if it is not in the best interest of the child. On the contrary, in many districts not all children who would benefit from inclusion are given that opportunity, especially if the disability is moderate or severe. Many parents have to fight for their child's right to inclusion. We fought our school district for seven months to get our son partially included. Also, children who are included are entitled to receive educational benefits, not merely exist or gain some social or play skills.

To me, inclusion is more than just being included. It is belonging. It is attending your neighborhood school, whether in a self-contained classroom or not. It is for that self-contained classroom to not be in the far left corner of that neighborhood school. It is sitting among regular education students during lunchtime and not just at a separate table in the same lunchroom. It is being part of the district's school calendar and not being just a "reading buddy" in January. Inclusion is not only educating those with disabilities in their least restrictive environment, it is also teaching the regular education students about dignity and respect.

Is your special needs child getting a good education?

Top 10 signs that your child in special education may not be receiving a Free Appropriate Public Education.

• Your child is unable to meet the goals outlined on the Individual Education Plan(IEP). Your child may have had the same goals year after year. A child’s goals must be based on the child’s ability, not on what the child is expected to learn in a certain placement.
  

• Your child’s goals are too general, weak and un-measurable. Do the goals say “child will begin to” or are the goals solely measured by teacher observation? Goals should state the following: **1) The direction you want to go; 2) the problem you are addressing; 3) the present level; 4) the amount of change by the end of the school year; and 5) the methodology needed.
  

• Have you been told that the district does not have the funding needed for x,y and z? Federal and State laws require the district to provide your child with the services he/she needs, not what services the district has available.
  

• Inadequate evaluation by the district or refusal to include independent evaluations as part of the Multidisciplinary Evaluation Team (MET). The MET team must consider parent input and independent evaluations when determining eligibility for services.
  

• Lack of progress in current placement. Your child may be making some progress in the districts program, but it may not account for more than developmental gain. Is your child falling further and further behind his/her peers each year? Meaningful progress would enable your child to progress toward the general curriculum.
  

• Has the district failed to provide you with the following: 1) an invitation to attend your child’s IEP meeting; 2) a copy of Procedural Safeguards prior to each IEP meeting; 3) a copy of your child’s IEP and all evaluation reports; 4) copies of progress reports throughout the school year; and 5) written explanation of any requests that have been denied.
  

• Have the following persons attended your child’s IEP meeting: 1) your child’s teacher or other qualified teacher; 2) a representative of the district who is qualified to make decisions pertaining to the IEP; 3) a member of the MET to present the team report if a MET evaluation took place; and 4) a regular education teacher if your child is included. § Has your child been placed in a one-size-fits-all placement where children of varying needs all receive the same services out of convenience or is your child segregated from typical peers? Federal law states: "that to the maximum extent appropriate, children with disabilities, including those children in public or private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily."
  

• Have you been told any of the following: 1) The law doesn’t state that we have to provide x, y and z; 2) We are not allowed to staple your notes to the IEP; 3) your child only has to make some gain in our program; 4) we don’t offer that here; 5) there are no spaces available in that program; 6) the speech, occupational or physical therapist has already reached their caseload; 7) your child is not old enough/disabled enough to receive x, y and z; and 8) we don’t have to, we can’t, we won’t.

• Have you been told that the district does not have the funding needed for x,y and z? Federal and State laws require the district to provide your child with the services he/she needs, not what services the district has available.
  

• Has the following ever been said about your child: 1) your child is lazy; 2) your child is unmotivated; 3) your child stopped learning; 4) your child does not have that potential; 5) your child will always be disabled; 6) your child’s behavior is your child’s fault; 7) your child does not try hard enough; or 8) your child will feel self-conscious about his/her inabilities if we expect too much out of him/her.