Stories from Parents
"We didn't even know we needed to get help."
Believe me, neither did we. I remember saying to my wife that when you have a special education problem, you go to the trained professionals at school. After all, these individuals studied and trained to become educators of special needs children. Of course they will help! Our naïveté cost our son dearly, as he was delayed in receiving the special education intervention he required. Follow the map; we will show you how to get the help you need.
One Parent’s Warning
“I would like to offer a few notes of caution with respect to getting special education services from the local public school. My son has Asperger's and in spite of the clear and definitive diagnosis, the school stonewalled us. They fought us on the need for services and then delayed implementation is much as they could. I was also shocked about the overall ignorance of school personnel regarding special education law and the services they were required to provide. We were given young and inexperienced teachers to handle our case; it almost seemed like the tenured teachers did not want to do the extra work. Also, one of the special education teachers reacted with prejudice and resentment at having to work with a child of my son's profile.”
Our School’s Reaction
“We went to the school to ask for academic and behavioral testing for our son as is guaranteed by federal law. The school principal met us with tremendous hostility, and refused to schedule the tests. She was rude and belligerent and angrily fought us on getting him evaluated. 'He's fine, he doesn't need testing.' We finally put the request in writing, with a thinly-veiled threat that we would get an attorney involved if our son was not tested. The school finally relented. The school will set up the in-school evaluation; you don’t need to be involved with that aspect. They will have time deadlines of their own to deal with once they’ve agreed to test your child.”
"You mean I have to negotiate with my own school? Are you kidding me?"
That's a direct quote from the father of a grade school girl when informed of the work he needed to do to receive special education services for his learning disabled daughter. Frankly, the dad still couldn't believe that negotiating was necessary until after a few meetings with the school. He came back to me afterward and said, "Now I know what you're talking about."
“It's up to you to manage the process. If you hire an advocate or attorney, it's still up to you; they are not as motivated as you to solve your child's problems. You own the challenge. You're the manager with the deadlines, objectives, and time frames. You and you alone will drive your child's future - no one else."
Positive Parent Story
“Our son is severely autistic and we went to the local school asking for help. We did not experience much conflict in our negotiating with the school, it actually went quite smoothly. They recommended a good school that our son is now attending, and we are seeing progress. The stories we have heard of parents having conflict with the school aren't true for everybody. It seems to be a case-by-case basis.”
Our First Parent Meeting
“The first time my wife and I attended a meeting of parents with ADHD kids, we felt invigorated. Finally some people who understood what we’re going through. Finally some people who weren't going to judge us based on our child's behavior. Finally some people we could talk to who really understood, rather than looking at us while giving holier-than-thou parenting advice. These groups can also be a great source for finding members of your team such as the educational advocate or an attorney, if it comes to that.”
Parents of an Autistic Son
We have another story from a friend whose son has Autism Spectrum Disorder. Many autistic children have a great deal of difficulty moving to new environments. This particular boy had a very difficult time going to his school and was so terrified that he would sit in the hallway or the stairway at the school all day long. His mother found out about it and challenged the school for an alternative program. It was patently obvious that a child sitting in the hallway all day is not making effective progress. The school said that the boy should stay where he was, claiming they were the professional educators and knew what was best for this boy. The arrogance of these administrators and teachers is staggering! Rather than do what was obviously best for the child, they wanted to save money and not provide proper services, which can be costly.
Our friend also tells a disturbing story about getting a diagnosis from one of the most renowned doctors in the autism field. The mother had seen this doctor at a conference and persistently tracked him down so he could evaluate her son. After hours of testing at the mother's home, the doctor walked throughout the house and found the space he was looking for. It was a section of the home that could be modified into an empty closet with a lock on the outside door. The recommended treatment from this “expert” was to lock the autistic child in the closet every time he misbehaved. In a military setting, many countries around the world would consider that “treatment” to be torture.
If you want to know the full story, you can buy the book “Dancing with Max” by Emily Colson. This is the true story of a single mother who raised a severely autistic son. She takes you through the days of the initial diagnosis at two years old, right up to Max’s present age of nineteen. While not specifically a special education book, it's a great read as she takes you through the trials and triumphs of her life with Max.
Parents of a Bipolar Son
“Our son is bipolar and suffers from severe depression. Despite years of medication and treatment, he is still suicidal and has attempted to take his own life three times. Our local school district could not have been nicer in helping us find the school our son needs. They were professional and cordial, and seemed to have a thorough understanding of our son's issues."
A Parent’s Mistake
“One huge mistake we made early on was going to government websites to learn about all the services provided for special needs children. These sites go on and on detailing the incredible level of special education service guaranteed by federal law for every child needing special education. In practice, this simply isn't the reality for many SPED parents. What the law says and what actually happens on the street can be two very different things.”
A Warning on Parent Meetings
“I had to be cautious when attending parent meetings. Some of the groups were great, and I made a number of tremendous contacts and made some friends. However, some of the groups were awful and I avoided them. The parent groups I avoided were ones where the central focus was anger at the school system. Parents would go around the room detailing the services denied and the intimidation tactics used by the school, all the while becoming more and more angry! It didn’t accomplish anything; the meeting would end with nothing constructive to show for the time spent there. Anger gets nothing done."
Overwhelmed, I Couldn’t Handle Fighting Anymore
“My sister told me I had to keep fighting to get the right level of services for my son with Asperger's. I just couldn't do it anymore. The special education meetings with the school were so intimidating and so upsetting that I just did whatever the school recommended. I know that's not the answer some parents would like to see, but I couldn't fight anymore. I did the best I could."
“We just found out that a friend has a special needs daughter, and they didn’t tell us! We wished they had told us what they were going through; we could have used their help. As it turns out, they hired an advocate and an educational attorney to help them through the IEP process. They learned all kinds of tricks and tactics in negotiating with the school, but we didn't find out about it until after the fact. We could have used their advice, but they didn't want to go public with their daughter’s issues. I wish they had, it would've saved us a lot of trouble."
No Testing for my Son
" I don't want my son tested to see if he should get special education services. Once you're labeled a sped kid, that's it...your academic career is over! Teachers will treat you differently and no matter what he does, he'll just be thought of as someone who's deficient and not smart. Besides, the other kids will tease and stigmatize him and who needs that? He'll be fine, kids mature at different rates and he'll eventually catch up."