Lately, I have been focusing a lot of my energy on researching what the law says about education as it pertains to a special needs child. More specifically, as it pertains to my special needs child who is going to be entering kindergarten this fall. For those out there who are new to the IEP (indvidualized education program) developing process, I want to pass on a little of what I have learned so far. I still have miles to go, but I wanted to share what little information that I have already gleaned.
First of all, the law governing the education of students with special needs is the IDEA (Individuals with Disabilities Education Act). You can Google it and find a copy online. This law states that all students with special needs are entitled to a Free and Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE). Of course, this leaves a lot of room for interpretation, so as a parent, you must be vigilant when it comes to advocating for your child.
Always tape record everything. If it is not recorded via a audio recorder, and it isn't documented on the official IEP, it is as if it was never said. Lots of times, school officials will make comments during meetings such as, "That gets worked on anyway." or, "It doesn't really need to be a part of the IEP." That may be true, but if it has been recorded,
they must follow through and implement what was said in the meeting.
I also have a hard time remembering everything that is said in a two to three hour meeting. An audio recording helps me to recall who said what and when it was said. Be sure to let all others who are at the meeting know that you are tape recording it, otherwise, the recording may be inadmissible if you ever end up going down the road of mediation or litigation.
I have learned that walking away from the IEP meeting and not signing the IEP speaks volumes. It means that you do not agree with the proposed plan. It also means that your child's case will quickly be moved up the chain to someone who probably has enough power to help to resolve the issues. Many parents that I have spoken with don't realize that this is even an option. Personally, I think that it is the best way to get your voice heard by those in power. If the issues are not resolved, there is always mediation or, worst case scenario, litigation. I pray that we never end up going that route, but we are going into each meeting with our eyes open to the fact that it is always a possibility.
If you don't understand the law, there are resources out there that can help you navigate the system. Most school systems have a Parent Resource Center that can help sort through some of the red tape (this is a free service offered to all parents of preschool through high school students). You can also get ideas from parents who have been there by attending support groups or networking with them on social media. A word of warning though, be sure to take everything you hear from other parents with a grain of salt. Being a parent of a child with special needs can stir up some serious emotions. Every decision the school system makes can be taken very personally. Also, be sure not to react to hastily at the school meetings regarding your child. The heat of the moment is not always the best time to give your final opinion. Sometimes you have to take the time to step away, take a deep breath, and reflect back on the situation when you are thinking more rationally.
I truly believe that the majority of people working in the school system care about every child that attends their school. (My parents are both teachers for goodness sakes!) But, I also know the reality of the situation is that they have very limited resources and must pick and choose how and where to allocate the small amount of funding that they receive. I encourage all parents of children with special needs to do their own research. No one else is going to do it for you. Go into these meetings as prepared as possible. You must advocate for your child. Give them a voice in each meeting that is held regarding their education. If you speak for them now, maybe, one day, they will eventually be able to speak for themselves.
If you weren't already aware, there is an amazing woman with autism competing in the Miss America Pagent tomorrow night. Her name is Alexis Weinman and she is from Montana. As a true blue North Carolina girl, it will be a rare event that I will be rooting for someone to win other than Miss NC, but this young woman's story is so inspiring, I can't imagine supporting anyone else.
As the mother of a little girl with autism, I am in awe of what this woman has accomplished. When people think of autism, there is such a stigma. These kids will never be social, they will never be able to publicly speak, they will surely have some kind of solitary career where interaction with others is minimal. These are some things people, including myself at times, tend to think about children with autism. The fact that a woman with autism is in such a public position, has already been already crowned Miss Montana, and is in the running for Miss America, is mind blowing. How much more social of a job can one have. She must daily interact with others, speak publicly on a routine basis, and she will be scrutinized daily by those who find it easy to judge, but difficult to really understand someone with autism.
I was in tears tonight as I saw her parents interviewed on television. The pride that they feel must be completely overwhelming. When your child has any type of special needs, you, as a parent, can't help but assume that there will be limitations on their future. The amount of hope that this girl has given to a nation where 1 in 88 children are diagnosed with autism, is unfathomable. I have said before that I have grieved over the loss of what my daughter's future could be. I am guilty of assuming that this diagnosis will surely determine the avenues that her life will take. The fact that this girl has triumphed over the enormous obstacle of an autism diagnosis is eye opening to me as a parent of a child on the spectrum.
I have a t shirt that says, "Autism: Different, not less". I never really grasped the true meaning of that phrase until recently. Hopefully, I will no longer let my own preconceived ideas of autism dictate my perception of my daughter's future. She can do anything and be anything. Just because she is on the spectrum doesn't mean she has to fit into the little box of what society thinks a child with autism will end up as. Her future does not have to be a result of her diagnosis. Her future can be a result of her ability to overcome whatever difficulties she may face.
I am not under the assumption that my little girl is going to be the next Miss America. That would be great, but I really don't think she's the pageant type. What I am saying, is that she can be anything that she sets her mind to be. The Lord only knows what the future holds for my daughter. I will continue to trust in Him and the fact that He has said, "...For I know the plans I have for you," declares the Lord, "plans to
prosper you and not to harm you, plans to give you hope and future." As long as my daughter knows that He holds her future, I am positive that she will surely prosper in whatever lies ahead.
So, I know that I haven't blogged in a while. A lot of things have been going on in my busy life. We have recently gotten our daughter reevaluated to determine eligibility for special education services when she begins kindergarten next year. This evaluation consists of numerous observations and standardized testing scenarios. This has made our already hectic schedule even more hectic than usual.
Her recent eligibility meeting determined that she does fall under the Autism label within the school system. Previously she was under the label of Developmental Delay. I am extremely concerned about the change of labels. Those within the school system have told me that labels do not determine placement. I will believe it when I see it. The area we live in doesn't seem to offer much when it comes to full inclusion in schools. What usually happens is that the kids with Autism spend sometime in a regular classroom, but a good part of their day is spent in a self contained autism classroom. I have made it known that this is not an appropriate placement for my child. With minor assistance, I am sure that she will be able to function in a regular kindergarten classroom with minimal pull out. Hopefully we will be able to rock the boat and get my little girl the "Free and Appropriate Education" that she is entitled to by law.
At this point though, she is doing really well. She is talking and commenting more, and has even developed somewhat of a sense of humor. She has started to say things that are kind of off the wall and then laugh. The other day, I asked her what her teddy bear's name was and she replied, "Ellie", and then she killed herself laughing like it was the funniest thing she had ever heard. I am thrilled that she is able to start to find the humor in life. Do you know how hard it is to teach someone to have a sense of humor?!? It is nearly impossible to explain why something is funny, and by the time you have explained it, it really isn't that funny anymore.
I have also been quite concerned about my son. He is almost 15 months now and is still quite delayed with his speech. He is getting speech therapy once a week and is making progress. But when you have one child on the Autism Spectrum, you tend to over analyze and worry about anything that your second child does that could be seen as odd. Especially when your second child is a boy and Autism is so much more prevelent in boys.
My son is in a sibling study at a major autism research center. He will be evaluated every four months for the next year, and then he will be seen once or twice a year after that. They look at every aspect of his development. When I recently took him to his 14 month visit, I was very concerned. They did confirm that he has a significant speech delay. When I asked them point blank if they thought we should go ahead and pursue ABA therapy for him, the evaluator said,"Not at all." She sees many children on the spectrum and she did not think that he fell into the category of autism. It's amazing how relieved I felt. I didn't even realize how worried I had been. I think that my worry is what has kept me from blogging for such a long while. I just couldn't write about what was going on while everything was still so up in the air. I guess in my mind, if I wrote about it, then it might have come true.
I am well aware that we are not completely out of the woods with my son. Until he starts really talking and engaging with other children, I probably won't be able to fully relax. But in the meantime, I am going to try to take it day by day and focus on all of our many blessings. As recent national events have shown, you never know how long you have with your children. I intend to try my hardest to make their lives as full of joy as I possibly can. This may mean more time playing and less time cooking or cleaning. (Not that I have ever really been Suzie homemaker or Betty Crocker.) I just think that they will benefit more by my being emotionally present in their lives than if I was merely physically present with a really clean house and a huge meal on the table everyday.
