I was recently at an event with a group of mothers who were discussing delayed speech in children and when the appropriate time was to call Early Intervention in for an evaluation. From my perspective, it is never too early. If they find nothing, great. But if they do find a delay, they can start therapy immediately. If the child catches up, as most of the kids in Early Intervention do, the therapy can be stopped. If by chance they have a developmental disorder such as autism, the earlier the intervention is started the better. If a parent is concerned about their child's development, contacting Early Intervention is a critical step toward their child succeeding in their preschool years and continuing to succeed in their future academic career.
While the idea of delays and the need for Early Intervention was being discussed, one mother found it imperative to point out while Early Intervention is a good thing, it is also up to the parents to work with their children to teach them to speak. I felt she implied that if your child is not speaking at an age appropriate level, you as a mother must not be pushing them hard enough. I am sure that she meant no harm in her comment. But as a mother of a child with autism and another child with a speech delay, I know that I have tried everything I could think of to get my children to speak. This situation was just another instance where it was implied that I was to blame for my children's delays.
I remember when my daughter was first diagnosed with autism someone at worked asked me, 'How do they know she has autism?". I was still trying to understand the diagnosis myself. The only thing I knew to tell her was that my daughter was two and didn't even have five words yet. Her response was, "Oh, she's your first child. You must do everything for her and she doesn't have to speak". It was like I had been punched in the stomach. Telling a mother that she must be the reason for her child's delays is extremely unfair. Personally, my kids don't sit in front of the television for hours on end. I don't do every little thing for them enabling them to stay silent. I get in the floor and play with them every day. I make animal noises, car sounds and I try to teach them to play pretend with their dolls and action figures. In other words, I have done and continue to do, everything in my power to get them to communicate.
Sometimes, you just need a professional to come in to help jump start your child's communication. The coaching that I have received from the speech therapists through Early Intervention has been invaluable. The therapists are able to educate the parents on the best way to teach their children to communicate. They work with children with speech delays every day. They have the training to know what to do when nothing else has worked. Often, even the most logical things can get overlooked when a mother is so consumed with worry that she can't even begin to think about how to teach her toddler to talk.
The doctor once told me that my daughter would learn to communicate in the same way that I would learn a foreign language. That totally made sense to me. She just wasn't going to learn to talk just by being exposed to the language as most kids do. It was going to be lots of work to teach her how to verbally interact. It has even been suggested that I get the English version of Rosetta Stone to teach her how to speak appropriately and carry on conversations. I could have waited until the end of time to give her something to eat or play with. It still wouldn't have forced her to speak when she didn't have the fundamental ability. She wasn't wired to understand information the same way other, neuro-typical children learn.
I know people mean well, but when a child is delayed, the last thing a mother needs to hear is that she isn't trying hard enough to get them to talk or interact. It is very easy to look down your nose at others and judge when you are on the outside looking in. You may not even realize that is what you are doing. A mother of normally developing children may think The mother of normally developing children may think that there should be a very simple fix to a child not speaking. But whe But, when a child is truly developmentally delayed, things aren't so easy. When you have a child that you can't get to look at you much less talk to you, communicating with that child feels like an enormous mountain you are continually trying to climb. When a child is not developing normally, all the mother really needs to hear are words of support and encouragement, not wagging fingers and shaking heads.
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.
