What Works? How Will I Get the Services My Son Needs?

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Boy, can I relate to the difficulties described in this post about the difference in high income / low income school districts!

I saw the differences in test scores between high income schools and low income rural districts.  And my children were in the rural district.

My son needed special education services.  He needed higher cost services so he could get a genuine education.  How was I going to get the school to provide what I knew he needed?

I did learn the advocacy skills Pam speaks of.  I read the Wright’s website and their books. I read the laws and the regulations.  I read case law to understand how the courts were interpreting the laws and what judges were saying in their decisions.

Did I make mistakes along the way?   Sure I did.  But I quickly learned that bluster and threats do not work.

I also learned what does work

  • I learned that developing alliances among the staff  helped a lot.
  • I learned that gathering with other parents helped a lot.
  • I learned that simply going to Board of Education meetings got the attention of the Board members.  They wondered why I was showing up regularly.  They wondered about the questions I asked in public sessions. That led them to ask some of the same questions.  The administration HAD to answer them.
  • I learned that maintaining a paper trail and documenting meetings and conversations helped because it held people accountable for what they were telling me.
  • I learned that appreciating efforts, both verbally and in writing helped.  I could not be seen as a trouble maker when I clearly appreciated effort and reminded staff and administrators of the talented and dedicated people in the school.
  • I learned that it is possible to disagree with a staff person’s opinion without vilifying the person.
  • I learned that many times, the best outcome came from a difference of opinion when it was thoughtfully resolved.
  • I learned that being “pleasantly persistent” is a great way to produce compliance with the agreed on services.
  • I learned that when I was polite to people, I was not responsible for their emotions. (Some people do learn that being angry or upset can work to deflect expectations of compliance.)
  • I learned that I couldn’t expect everyone to feel the same way I did about my son or his needs.  And I learned that that is OK.  I understood my son’s needs.  That was my job.

Rural, urban, suburban – it matters less where you are than how you approach the matter.

Advocacy skills are not a guarantee of FAPE.

Advocacy skills are absolutely necessary for effective participation in the process of getting FAPE for your child.


Meet Debbie Larson on the Wrightslaw Ask the Advocates page at https://www.wrightslaw.com/advoc/guest/ask.advocates.htm

Read How I Got the School to Change My Son’s Program & Placement at http://www.fetaweb.com/success/placement.autism.htm

  1. I’ve learned that unless you have money, and a significant amount of it, then if the district wants to continually deny your child of FAPE, they can. I agree that kind words go a lot farther than harsh. I’ve learned that sometimes you don’t know how to approach the matter until it’s too late. I’ve learned that no matter how much teachers want to help, when the administration has made up their mind, teacher’s hands are tied when it comes to an IEP. I’ve learned there are many people out there who want to help, but can’t. I’ve learned that sometimes you have to make a choice between selling your home or continue legal services. I’ve learned that when the financial means run out, so does the help. I’ve learned that in extreme cases like my child’s, my child will never have anything close to FAPE because we cannot afford it.

  2. Thanks Pam and Pete for publishing these comments and observations from parents. Parents are so intimidated in special education meetings because they don’t know the special ed language or how to interpret tests. They need an advocate to help them negotiate for what education plan and modifications their children need to be learners. Who am I? A retired Special Ed Teacher still substituting Indiana.

  3. On Jan 22, Lisa said: “I think there is a fine line between “threats and bluster” and “being firm and letting people know you mean business”. Sometimes stopping pleasantries and putting your foot down can be effective if it is done in the right way.”
    When I read this I immediately thought of renown atty Gerry Spence. We start each chapter of our From Emotions to Advocacy book with a quote. Chap 27, last chapter, quote from Spence is “If we or our argument are perceived as a threat, we will never be heard.” Bottom line, think about how you are being perceived!

  4. I think there is a fine line between “threats and bluster” and “being firm and letting people know you mean business”. Sometimes stopping pleasantries and putting your foot down can be effective if it is done in the right way. I spent several months arguing with my son’s school (9 years old, 4th grade, ADHD/Anxiety/Reading disability) about his IEP not being followed. I was firm. I was assertive. They didn’t like it. In the end, I got what I needed.

    Being firm and assertive can be interpreted as being aggressive but that’s not necessarily the case. Sometimes it’s hard to tell when being firm and assertive is called for rather than being pleasant and documenting… that’s why advocacy is difficult.

    I was able to resolve my issue with my son’s school without involving attorneys, and he is getting FAPE. That’s a win!

  5. My son has spastic quad cp. developementally delayed. He is in a wheelchair. My problem is my sons hygeine, the aide at his school is not changing his diaper.Can you imagine sitting in a wet diaper all day? I have addressed it to the school, teacher etc.what happens if this problem isnt corrected? Can legal action on neglect-poossible?I know if my son isnt being changed–what about the other kids???

  6. thank you for being a leader and advocate in my area!Also your take on the challenges we face as parents of children with different learning styles, is something I can learn from too..such as “being pleasantly persistent”! Also, attending Board of Education meetings and asking relevant questions is something I could also be doing..my kids are in the Buffalo Public School system, all 3 have or do still have accommodations; it’s been a long road but they have received most of what they need, still a little tweaking to do! But I will keep in mind the approach you recommend, and that will help a lot. Thank you for your efforts!

  7. This response is for Kevin. Do you have an update? Here is one strategy as I was a paraprofessional.
    1. The teachers do not or should not change diapers. That is why they have aides in the classrooms so the teacher can focus on teaching–this may be part of the problem at your son’s school or the school nurse should change him.

    2. What do you mean for time for toilet training. What do you want that to look like in terms of how many times a day, data, etc. Is it in the IEP?

    3. You can work with the school and say, I am working on toilet training at home and sending to school in regular underwear with back-up diapers at school.

    4. I should not say this–but unless your son has a dedicated staff member–toilet training at school is very limited.

  8. I agree that going to the BOE meetings is worth the time and effort–even if you never say a word–but take notes, talk to people, network, etc. Administrators do watch and they do relate to you in a more positive way. It is not easy to attend the meetings as my town has them twice a month–I learned so much and it is good to see things from an administrative point of view. And, I learned to collaborate. My child was not going to get every service that I requested–but my child did get FAPE–it can work out.

  9. It is alarming that dropping services when a child changes school buildings is such a widespread practice. It is ridiculous that a parent is told next year’s services will depend on how many students there are with similar needs & is made to feel foolish if they ask questions. Parents are given excuses by people who know better.Some teachers do great things; others want to but don’t have the skills as the district hires whoever they can get to take the job.The knowledge/strategies needed to educate children has existed for years, but skilled professionals are needed.It takes a willingness to raise the profession to a higher level,so only the best compete for the right to be educators.The mantra at the IEP: explain the specialized instruction my child receives for ___ – what does it look like and why are you doing it? – show me the data.

  10. Wondering how you have time for all this. I have only just started working more than 1/3 time — I work 2/3 time — and can scarcely find time for all the work and effort it takes in this rural district to get what my kids need. One is twice exceptional Asperger’s, the other has behavior problems. How can I resolve things if the school thinks things are okay, but he’s hitting more this year than last?! Oh, BTW, just commenting on the shift into middle school that Clark mentioned, when my Asperger’s kid got into Middle School, it was like entering a black hole — none of the teachers had read the IEP, no one was making accommodations. I was shocked how much more I had to do. Once I realized that, it made it easier.

  11. I would like anyone ‘s advice or help right now. My son is 16yrs. old non verbal moderate to severe autistic with type 1 diabetes. We filed due process 2yrs. ago against our school district. we brought our son back to his district for his education. Now we have so much trouble and our son has regressed due to all the changes they have done to him. I go to school with him because of his diabetes to care for him. this year we have at school an abundance of children with different needs. My son’s aide was pulled away from him half of the day so he was just sitting there not learning anything and with all the changes that have taken place, our son has regressed with his education. He now has more behavioral issues. what am I supposed to do? his iep is this week and i am requesting a review.

  12. I noticed you advised Kevin that a goal for toilet training is appropriate for the IEP. I agree. But the facilitator is saying that potty training is a developmental issue over which they have no control. They will agree to teach him to pull his pants down and up (IEP goal), and to indicate (verbally or non-verbally) his need to go to the bathroom, but they won’t agree to a goal of say, daytime dryness when taken to the toilet once an hour (which he acheives now 70 to 80% of the time). Isn’t all learning more or less developmental issues?

  13. Kevin, Have you considered requesting an aide to help care for your son during school? His physical needs are important for the achievement of an appropriate education. Could you have your doctor document the negative effects of prolonged time in a wet or soiled diaper? I know this is a sensitive situation with school staff. Some people are simply uncomfortable changing an older child. As part of his IEP under physical needs, time for and a goal for toilet training is appropriate. It certainly relates to his ability to benefit from his education. See if you can develop an ally, like the school nurse. That will increase your chances of getting the school to want to provide what your son needs. ~Debbie Larson

  14. Clark, 1st, you might check his IEP and the goals. Are they being reached? Did you get prior written notice of the reason for reducing his services? This should detail the reasons for the change. Simply because he is in a different building is not sufficient. You may need to consider adding direct or indirect services by a special ed teacher to his IEP. If his frustration is negatively affecting his school work, consider requestion a functional behavioral assessment. Remember that this assessment is subject to independent educational evaluation rules. If you don’t agree with the school eval, you can get an independent at district expense. Go back to what was working before and document the success. That can help you get those same services now. ~Debbie Larson

  15. To Deb, I first listened. Getting to understand the dynamics of the Board is important. then I made sure I got the agenda in advance of the meeting (usually available from the superintendent’s office). Boards typically have a period of time for public comments. I used my time (2 minutes in my district) to ask questions like How does the Board determine if the students are making adequate progress? Or How is the Board notified of a situation where a parent disagrees with the Committee’s decision? I gave copies of my questions in writing to the Board members with an easy way to contact me. Questions about teacher training or support for aides helped raise awareness. Also, usually, you can request executive session time to discuss a specific situation. Again, thanks for responses to this post. ~Debbie Larson

  16. My grandson who has autism has been main streamed into regular classes (he is in 6th grade). He had special help up through the 5th grade, than when he was transferred into another school (middle) he had nothing. He is getting very frustrated and no longer has a special ed teacher. Can anyone suggest anything. IEP is coming up in several week.

    Thanks in advance for any suggestions.


  17. I have to agree with everything the author posted. It is difficult at times to keep your composure when you are talking about necessary and timely services for your child. It just seems like everything takes so long to get done. I just want to shake them and say “what if it was your child?”

    But, I grin and smile and continue to pleasantly persist in trying to get the things he needs. Glad I found this site.

  18. Thank you for the information above Debbie, you provide some valuable information. What questions (if I may ask) did you pose at board meetings? What is your advice for using the time allotted for public session? Your input would be greatly appreciated. Thanks.

  19. I need some advice. My son is a 12 year old 7th grader. he attends middle school. His first period class is Study skills. The fist month of school he received in house be cause he said some thing Inappropriate to a classmate. after the fact I had a meeting with the school principal regarding the incident I asked to see the written complaint . He showed me copies of the written complaints of the two girls however, There was no written statement from my son. Also, the dates and location where blacked out. This went to the Sheriff’s office.I asked the principal why my son was not given the right to make a written statement , he said” xxx told him that he did say those things and he told him verbally . I said still . why wasn’t he given the chance to make a written statement . He asked ” are you telling me that he lied?”

  20. I need HELP! My son has Jacobsen’s Syndrome and is 10 years old. He is attending the special education class at his current school. He is completely non-verbal and is not toilet trained. The teachers are not changing his diapers or allowing him time for toilet training. I have video evidence of my son coming home with the same diaper he was wearing when he left the house that morning. What can i do? I have went to the teachers and school board and nothing is changing. Please help!

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