Fighter Parents

I read a great blog about how families of special needs people are always in fighting mode:

“I think people wonder why special needs parents stay in fighting mode. It’s because if we let our guard down even for a day, we miss something. Sometimes it’s something big. Or something as simple as our family getting to swim together in a community pool with our son safer by use of a floating vest. Our “fighting” isn’t fighting as much as it is just doing what we do. Or doing what we have to do.” http://supportforspecialneeds.com/2013/06/28/why-special-needs-families-stay-in-fight-mode/#comments By Julia Roberts

It got me thinking about the many fights we’ve had since our son’s diagnosis… He doesn’t have a modified curriculum on his IEP! Keep that little bully away from him! Don’t send him home– give him accommodations! You receive Federal funds– you can not exclude him! He’s not going into the multiple disabilities classroom– he’s going into general ed! And the list goes on… some fights I’ve handled well; others like a rabid mama bear. Some fights I’ve won– others have thrown me on my butt in a puddle of tears. But we HAVE to persevere.

I love the Samuel Johnson quote “Great works are performed not by strength but by perseverance.” But, I do believe that sometimes strength is needed… we have to be strong enough to get up in the morning and go head-to-head with people who are afraid of our kids or are too lazy to work toward our high expectations. We have to be strong enough to learn the law and use it. We have to be strong enough to keep on believing that our kids will reach their maximum potential when everybody around us only sees the disability.

Our children need to know that they are “good enough” to do what others get to do– they need to know that we’ll fight for them– that they are worth it! That we don’t give up– we accommodate.

Some of us fighter parents create organizations to include their kids when the mad hits (Ohio Adaptive Sports for example) others hire attorneys and some just pay for the private lessons when their kids are kicked out of group swimming lessons at the Y. (And wait to rub swimming medals in the faces of those who excluded our kids.).

I believe that every generation of fighter parents weakens the walls that our kids have to face. I want to be a fighter parent who helps clear the path so others have lesser fights.

Some Things Are Unacceptable

Yesterday I had the opportunity to meet two young teens with autism and their parents. Both boys were very friendly, engaging, funny! But…

Although both of these young men are more verbal than my son and both have better coordination, they are both are allowed to use autism as an out. Their families make excuses for them and accept things that society finds unacceptable.

One of these teens has hygiene issues. His grandmother, who he lives with, is frustrated and wants him to bathe, brush his teeth, stop picking at his pimples… but, “he has sensory issues” so he “can’t”.

The other teen interrupts constantly, is physically aggressive (because he doesn’t know his strength not because he’s mean or an intentional bully)… but, he has autism and “can’t control it”.

Disclaimer: I am just a mom. Every child with autism is an individual. I’m telling you what works for us– not making recommendations for your kid.

There is no “can’t”. There are accommodations, modifications. There is creativity and patience. Whether we like it or not, people with autism have to live in a world that is uncomfortable and unforgiving.

hygiene: Sensory issues do make it difficult… how do you get a child who gags when a toothbrush is put in their mouth, to brush his teeth? How do you get a kid who has poor self-control to not interrupt? We’ve done it slowly, consistently and creatively.

J used to gag with a regular toothbrush– so we used the baby toothpaste and brush for years (you know the kind– they’re usually blue, soft rubber bristles, fits over your finger like the finger of a glove). When he discovered Sponge Bob (around age 7-8) he made the switch to a little kid Sponge Bob toothbrush and toothpaste. Finally, at age 13 (when being a teenager was a big deal to him) he switched to a tween toothbrush and matching toothpaste– mild mint.  We used his interests and peer pressure to get it done. It’s taken 13 years– but he’s done it!

We’re still not “done.” J hates falling water so showers are out of the question for now– but, baths aren’t. Puberty is already here and swim team is coming this fall so he’s going to have to learn to take a shower this summer.

Lotion, ointment etc. don’t feel good to him– but, girls don’t like zits… and Stridex isn’t a cream. We’re still working on deodorant… haven’t found the right smell yet but we’re working on it. He doesn’t consistently use shampoo but we have an ongoing deal that he can keep his hair long if he keeps it clean so the threat of a haircut usually gets it done. He chooses the lesser of two evils.

Manners: This has always been a big deal in our home. We stress treating people the way we want others to treat us, we say please and thank you. We ask rather than demand. We do not interrupt.

When J was younger we used to stop the conversation and teach him the right way to get attention (“excuse me”, wait to be addressed, ask your question or make your comment) and praise him before returning to the conversation. From there, we would just say “manners” and continue our conversation until he did it appropriately and now, the raised eyebrows do the trick. It’s not a mastered skill but the frequency of interruption is so reduced that it’s not an issue anymore. Please is required to get what he wants. Thank you is required before moving on.

These skills will keep him out of trouble. Polite people do get what they need more often than the rude or demanding. It helps us value others and shows respect for them. Teachers, therapists, secretaries,  cashiers, lifeguards and peers respond much better to polite people. Having good manners helps people forgive the bad days as out of character rather than something  that is punishment-worthy.

I know I’m oversimplifying things here. But, the mentality of “can’t” because of autism is what dooms kids with autism to a life without reaching their own maximum potential. Life can be very uncomfortable for those with– or without autism– but, if we use it as an excuse, if we let our kids accept that they “can’t” then they won’t… And, that’s unacceptable!

Front Loading: What works for ONE kid with autism

My son “learns differently.” He struggles with auditory processing and has ADHD so, paying attention to a lecture is kind of a challenge. He also benefits from having a foundation to build on– learning new info without a foothold is pretty hard.

A few years ago we started “front loading” academic content standards so that our son would better be able to understand what his teacher was talking about. We believe that he learns best when information is layered. So, we started by going to museum exhibits, reading fiction (Magic Tree House series is GREAT!!), doing experiments and watching DVDs (Bill Nye, Disney Educational, IMAX, Discovery…) We haven’t had a vacation just for fun in about 8 years… but, we have had fun on our educational trips.

I’m not an expert and won’t advise anybody else on how to do this– each kid is an individual and learns differently–so all I can do is tell you how we do it and what works for one kid with autism.

Academic Content Standards:

So– we download the academic content standards from the Ohio Department of Education website– http://education.ohio.gov/Topics/Academic-Content-Standards/Science (these seem to change every year so, we check at the beginning of the summer). Then, we get the chronological order that it’ll be taught from the school and get the textbook* that we use as a guide for our work. Having the chronological order helps in case we don’t get it all done over the summer– and we rarely do!

*Recently J’s science teacher figured out that he is better able to follow along with in-class reading if he has audio of the text as well as the book so, I record mp3 of the textbook– one file per page and put it on his flashdrive so that he listen to it on his computer at school.

Exhibits:

Based on the Standards and the textbook I go hunting for museum exhibits and curriculum guides that go along with the exhibits. (Smithsonian is GREAT about this!! http://www.smithsonianeducation.org/educators/ they have online exhibits, curriculum, field trip guides, etc! Great stuff! And, my sister lives close by so DC has been a 2-3 times a year trek for us.) Museum and zoo memberships can be a big savings– we’ve found that we go more often when it’s already paid for.

Projects:

For the last two years we’ve done big summer projects– last year it was a documentary about Humboldt Penguins, this year we’re doing a documentary about the water quality in Lake Erie. Museum and zoo memberships really cut down on the cost of visiting these places… last year we were at the Akron Zoo at least once a week all summer and used the membership to get discounts for the penguin encounter, breakfast with the penguins, etc…. you get the idea.

 J is all about making movies– and it really impresses his “neurotypical” friends… Making documentaries also gives him the opportunity to work on academic and executive function skills: research, writing, reading, organization, planning, etc. So, while he’s doing a project that the girls will OOOO and AHHH over, he’s working on some pretty important skills that help him achieve academic competence– even excellence.

Before you go accusing me of being a tiger mom, let me add that we have fun together. I’ll write more details about this summer’s project in another post but let me tell you that last week when we made our first trip to the lake (1.5 hrs away) we hung out and played in the water, went searching for the nearby lighthouse, talked McDonalds into giving him an extra happy meal toy (THANK YOU!!) and he had sole control over the music. We did gather the water sample, made notes about our observations of the beach area, shot video and noted the GPS position– but it wasn’t just about the project.

Experiments:

This summer’s project requires weekly experiments to determine pollution levels in Lake Erie– but even last year, we picked an experiment a week from one of those books that uses everyday items that most of us have around the house anyway.

Workbooks and Reading:

J is also doing two worksheets a day (word problems and writing skills for last year’s grade level– because these are his two weakest areas) and once a week we’re doing “History Pockets” to front load Ancient Civilizations (It’s designed for grades 1-3 so it’s pretty easy but creates the foundation for future learning and has a pretty good list of vocabulary words and we follow it up with a subject appropriate History Channel documentary.)

In previous years we’ve read the Magic Tree House series and it’s been front loading social studies as well. But since J has reached grade level reading (Whoo Hoo!!) we’re now reading fun, age appropriate stuff… currently James Patterson’s Middle School series. The goal is to increase stamina and fluency so he’s reading aloud and increasing the duration by a chapter a week– un-scientific but functional.

It’s time-consuming and makes me so thankful that I have a flexible work schedule (most days) and that my husband is a teacher and has time over the summer to help (in between working summer camps and tutoring).  We are really fortunate to have time to do this with our son and we have seen his skills increase as well as his earned grades (he is graded– per his IEP– based on performance not perceived ability).

So– that’s what works for J. I feel like I should put a disclaimer in… I’m not a teacher, psychologist or therapist. I’m just a mom who (with help from teachers, psychologists and therapists) is learning how my son learns and working within those parameters to help him reach his maximum potential.

Autism Under Water

I’ve done a lot of online digging about autism and scuba. There seems to be some pretty violent opposition to teaching kids with autism how to dive… well… I disagree.

By saying categorically that people on the spectrum can’t/shouldn’t scuba dive they are being put into a box that they don’t deserve. Every person on the spectrum is an individual and should be treated as such.

My son is learning to dive. There. I said it. He has classic autism and he is learning to dive. He likes the silence underwater. He likes the feel of water on his skin. He likes the weightlessness, the freedom and the absence of crowds. He can’t talk underwater anyway so it’s not expected of him. Really… it’s paradise for an autistic kid! So why not?

So, J and my husband are doing this really slowly. He has taken “Discover Scuba” 3 times in a pool and now and is about to start the classes. Because he learns “differently” the classes are going to go pretty slowly– with front loading in advance– once a week for about 6 weeks and then another 5 pool sessions before open water certification. And– because of his age he will become Junior certified which means that he won’t be able to dive without a certified adult.

There is plenty that could go wrong… but, there is plenty that could go wrong with any person who dives. I don’t believe that the risks are any greater for J so long as this is done at his pace– and in a way that suits his learning style.

J wants to be an “underwater movie maker explorer who tells people to stop bullying the ocean”… but, he doesn’t want to travel– or move anywhere outside of landlocked Ohio. He’s 13 so things could change– probably will change– but for now, we’re encouraging him to pursue his interests. And, he’s interested in scuba diving.