Warning: This post is looong and informative, not entertaining. I won't be offended if that's not your thing and you skip it.
Now I have a daughter with special needs, though much less significant. And people can be pretty timid with their questions. So I thought I would address some common questions here! I am an open book about it.
Q: What's up with June?
|Mismatch Day at school|
A: June has a diagnosis of Level 1 Autism. She struggles with appropriate social interaction, learning in a group setting, paying attention and getting lost in her own world.
Q: How severe is she?
A: The autism spectrum has been divided into three "levels". Years ago, you would hear about Asperger's Syndrome and Autism being separate things. Now they (don't ask me who "they" is--the gods of the Autism Spectrum, I guess) have done away with the different diagnoses and call everything ASD (Autism Spectrum Disorder) with varying levels of severity (1 is the least severe and 3 is the most). Someone with a diagnosis of level 3 is likely nonverbal or may have extremely limited speech. June is the in "least severe" level 1. She has a lot of language and requires less support.
Q: So would she have been diagnosed with Asperger's a few years ago?
|Flag Day (and Gwen does whatever she wants)|
A: Probably not. Asperger's had its own characteristics, and for that reason many people are upset that everything is being lumped together. June was considered for Pragmatic Social Communication Disorder, which deals solely with social interaction, but the doctor thought she was a bit too rigid in other areas of her life to qualify for that diagnosis.
Q: But she's so social! I thought kids with ASD weren't social!
A: They often aren't, but sometimes are. June is social and loves people but does not know how to appropriately interact with them. Her social skills can be extremely awkward. She struggles having a reciprocal conversation because her brain gets stuck and only wants to discuss a few topics. Often, she'll prompt people to say what she wants them to say instead of letting the conversation flow. Sometimes I want to do this with other people too, but I refrain. Ha.
Also, the ASD diagnosis and evaluations were put together based on a bunch of boys. Because boys have ASD waaaaaaaaaaaay more often than girls do (about five times as much), girls have been harder to diagnosis. Girls tend to be more social than boys, and that includes girls on the spectrum. So even though she is more social than a lot of kids with autism, she still struggles with appropriate social skills.
Q: Is she in a regular classroom at school?
|The world's worst bang trim. Thank you, Great Clips!|
A: First of all, be careful about calling things "regular" or "normal". I don't care if you say it (and I say it often myself), but the PC term is "neurotypical" or "typical". And June would be considered "neuroatypical". But no, she has attended a self-contained classroom since she was 3 years old. I just had a meeting with her case study team at school, and it was determined that she will remain in a self-contained classroom for kindergarten. If she shows enough progress next year, they are hoping to move her into a mainstream typical classroom for 1st grade.
Q: Do you want her in a mainstream or self-contained class?
A: There are so many pros and cons either way.
She is very safe in her self-contained class. Safe from being overstimulated and safe from kids making fun of her, She also has a ton of support in her current setting. Her classroom has a 1:1 adult to student ratio. There is a full-time teacher and several aides and a behavioral specialist. They are highly trained on how to teach kids with special needs and how to deal with tantrums and meltdowns and rigid behavior. Also, June really struggles with learning in a big group. She will not pay attention unless you are in her face.
On the other hand, the mainstream classroom offers tons of typical peer models that she can learn from. There have been many studies that show that some kids progress most when they are learning alongside with kids who are not struggling with the same things they are.
I met with a therapist earlier this year to discuss June's school placement, and he put it in a way that really spoke to me. He said that a common misconception is that kids are placed in a mainstream class if they are on the smarter end and in special ed if they are not. But it has nothing to do with it. It has everything to do with how the kid learns best. June's teachers and I really struggled to know where to put her. She loves kids and needs to be around them to learn to socialize better. But she requires assistance on almost every task. Some of the assistance required is physical--helping her put on her jacket, button her clothes, etc. But most of the assistance is getting her to do what you say. She gets very stuck on what she wants to do or say and needs a lot of help to get with the program.
|Gwen's general attitude about taking pictures.|
Q: Aren't kids with ASD geniuses and have special talents they can do?
A: Sometimes. Some kids can do tons of crazy amazing things. Not all. June doesn't have a special crazy talent, though she is good at lots of things. She loves art and music. She's an excellent swimmer. But she also can't run or jump or go up the stairs without holding on to the handrail. She loves to sing, but when asked to perform on command, she rarely does. It's frustrating!
|Last Day of School! Which was today (06/23! Isn't that so late???)|
Q: What are some examples of rigid behavior that she exhibits?
A: Some kids have a thing they are set on forever, but June's little quirks come and go. She insisted on being called "Fluffy the Dog" for six months straight last year. And "Dumbo" for awhile. You can only imagine the looks I got when I would say, "Hurry up, Dumbo!" to my sweet little three year old scurrying behind me. Not my best look.
Currently, she has an extremely rigid bathroom routine. She places her green blanket outside the bathroom on the floor in a perfect square before she enters. When she opens and shuts the lid to the toilet, it cannot make a single sound or she will do it over and over again until it's completely silent. I count down from 5 as she lathers up her hands and then down from 10 when she rinses her hands. I started adding the countdown to her routine because she would take so long to do any given task that it kind of moves her along. But now it's a rigid part of the routine. That's the hard part about implementing something--it often becomes a requirement in her mind.
Putting on shoes and socks is a real chore. June has to tug on each corner of her sock three times before she puts it on, and then if the shoe doesn't feel right, we take it back off and put it back on and she has to tug again. I love summer and sandals!
The answer to these behaviors may seem simple--don't put up with it. And that is definitely something we work toward. But you pick your battles because there is a lot of battling to be done. It's helpful for me to remember that June doesn't do any of these things to be defiant, but rather does these things to satisfy a need in her brain. When we try to break her of a habit, it's like if someone were to tell you that the color red is now going to be green and you just have to deal with it. It's hard.
|Crying about wearing pigtails. So I offered to change them. And then she cried that she wasn't going to have pigtails.|
Q: Does she have meltdowns?
A: Yes, occasionally. She will bite, hit, scream and freak out sometimes if she doesn't get her way. My husband is SO good at taking care of these situations. He doesn't give in but he's also really calm.
And yes, lots of 5 year olds have tantrums. I think sometimes she's having a 5 year old tantrum and other times, she's having an autism tantrum.
Q: Does she flap her hands?
A: A lot of kids with autism "stim" or exhibit self-stimulatory behavior, such as hand flapping, as a way to comfort themselves. June is not a huge stim-mer, but she does chew on her blankie, and she does splay her fingers a lot. She also holds her hands awkardly or pulls back on her index fingers with her middle fingers, and it really creeps me out and I tell her to stop. You can see a little of what I mean here:
Q: So what will her life look like?
A: She will have a great life, but I don't know the specifics. She obviously needs a lot of support now. But there are plenty of kids with ASD who go on to live independently. There are a lot who don't. I read a stat once that only about 17% move out of their parents' house. That's a pretty interesting number though since I feel like the spectrum is so much bigger than it used to be, and I wouldn't be surprised if a lot more kids on the spectrum these days will be independent.
We are just taking it a day, week, month at a time.
Q: What are some things I shouldn't say to someone with ASD or to the parents of a child with ASD?
A: Overall, I think our society is super easily offended and I try not to be. I have said plenty of dumb things to people that I have regretted later, and I try to keep that in mind as people ask me questions. People really want to be helpful and supportive and would die at the thought that they are being insensitive to your situation.
That being said, I really don't enjoy a few things. One is when people tell me that June's diagnosis is wrong. I completely understand the initial incredulity that June has ASD. But if a person will spend enough time with her one-on-one (say 10 minutes), they will definitely see it. This is especially true if (1) you ask June to complete a task independently and/or (2) you also have other kids her age around and can see the marked difference. So I understand the initial "I am surprised that she's on the spectrum" as opposed to "I know someone with ASD, and June does not have it." I don't want to convince anyone of anything, and I won't.
Yes, she is high functioning, and that is a huge blessing! I am very grateful! But, we still struggle a lot.
Some great words someone once said to me: If you've met one kid with autism, you've met ONE kid with autism. Meaning it looks different on every kid.
I've learned a lot from June. I love her so much. She is my buddy. She loves life. She loves art, music, swimming, singing, dancing, cooking, chocolate, pancakes, playing with friends, and SHE LOVES dogs.
Q: Heather, why are you so long winded?
A: I don't know, but I received checkmarks instead of plus signs on all of my elementary school report cards for talking too much.