What’s “Appropriate” When it Comes to Children With Autism?

“Appropriate.” This is a big word in the autism community. 

We learned about this word years ago. We also learned why it is considered an important word. One big reason why the word “appropriate” is so important to us is that it is often applied during conversations with regional centers (in the state of California) and especially during IEPs. Therefore, I’d like to stress the importance of this word, “appropriate.”

Why is it so important? 

We learned the importance of this word because it helps us remember that dealing with autistic-related agencies is all about balance.

What do we have to balance?

As parents, you often find yourselves asking some tough questions and/or making some tough decisions. As parents of a special needs child, there are even more questions and decisions you face. You may have to ask yourself some hard questions about services. You may also face services that may or may not be available and/or fundable. You’re going to have to learn how to balance what you want for your child (for example, you may want everything for your child) with what is… appropriate.

Do you have to do this? Do you have to balance what you feel your child deserves verses what is available? Do you have to “settle” for “appropriate?”

No.

You can fight tooth and nail for everything. You can exhaust yourselves and change programs often and more or less make a battle out of every speck of services or lack thereof. You can really do whatever you wish. Of course you can. I’m suggesting that you don’t.

An example is a situation I observed a few years back. This child was new to my son’s social group. His mother insisted on viewing the activity of the group. The facility let her do this one time with the understanding that it was only the one time. They wanted to work with her son in the most appropriate way for a social group to work – without the distraction of his mother.

The mother was not happy with this decision. She would sneak back to the group’s room every week. The facility would ask her to stop and she’d keep doing it. She finally pulled her son from the program. Additionally, I recognized this child and mother from one of my son’s pre-schools. I also noticed they were not a part of that program for very long, either.

After they left, I asked myself if the mother often behaved like that. Did she constantly move her child from program to program, always determined not to stop until she had found the perfect situation. I didn’t really know this person but in the few conversations I had had with her, she would constantly talk about how no one was treating her fairly. She was upset not only with the social skills facility but other situations as well. And she made this very clear and very verbal.

Let’s look at an IEP. How many services and what types of services should you fight for? How do you know what to fight for? Is there ever a middle ground? When can you say, “Okay, we’ll try it like this and we’ll put our concerns on the back burner?”

We backed off after our son’s very first IEP. We wanted to keep the awesome speech person from the outside facility but the school district had their own speech people in place and they told us “no” to our special outside person. The school district employs their own staff. They’re not going to fund an outside speech therapist when they already have their own. We also couldn’t ask the regional center (again, this is for Californians only) to help. They are not going to fund a service that they know is funded by the school district.

Yes, we could have fought this speech decision. At an IEP, you can fight anything you want. But, we didn’t. We didn’t because it wasn’t an appropriate problem to fight. It wasn’t appropriate for us to insist on having the outside agency. We felt it was acceptable to try the school district speech therapists. Not pushing on this issue was… appropriate.

Again, appropriate is a big word that means a lot to us autism parents.

We never felt like we had settled. Instead, we felt not fighting this issue was the right thing to do.  Their explanation and our ultimate decision made sense to us. (Of course, we did learn later on that (generally) the school district therapists are hit and miss in terms of “quality.”)

We moved forward with our decision. At the time, we unknowingly established not only an appropriate approach to our child’s IEP but our own sense of balance. For future IEPs and/or regional center dealings we needed to remember that lesson. It was better for us to keep things in perspective and balance and always strive for what was “appropriate.” We didn’t drive ourselves crazy with this approach and we gave services a fair shot at success.

We wanted what was best for our child. We still do. With that in mind, we also very reasonable parents. Every time we are confronted with an issue, we consider each decision with this  question, “Is this issue ‘fight worthy’?”

The word appropriate, therefore, applies to you, the parent of the child with special needs. Just how much should you fight? When are the services being offered appropriate? And, when are you being over-the-top unreasonable? Keeping in mind that you continually pull your child from one service and then another and then another, you child may be suffering.

“Appropriate” is a good word to keep in your special needs lexicon. We use it often. We do it for the good of our child and the relationships we have in the autism world. The word appropriate is a word that suits us very well. And, perhaps, it should suit you, too.

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