Author Archives: mamafog

Parental self-care -migraine survival tips

A twitter conversation with Liana Brooks about migraines, inspired me to get started with a list of tips for those of us who get migraines.  I don’t mean to imply there is any connection between autism and migraines beyond being human. But I would like to spark more dialogue about parental self care.

Most non-medication related migraine advice is to avoid stress, eat well and sleep well.  Which is great advice for us humans, but most of us struggle with these issues and they compound upon each other. Don’t let self-care stress you out, set reasonable goals.

Accept that migraines happen. Of course I try to avoid them, but my main goal is to lessen the negative impact of migraines on my daily life. This sets me up to have some successes, which makes me feel less defeated by them.

I get up and go to bed at the same time every day.  This is hard, but irregular sleep patterns are a big migraine trigger. I don’t sleep in on weekends and I try not to stay up late.

Naps are migraine triggers for me, your mileage may vary. Even if I am up for part of the night, I’m better off waiting until my regular bedtime to sleep.

Find ways to give yourself five minutes of zen. Listen to a song, play a game, watch a funny video, whatever it takes. I’m teaching DD to give me a five minute break.

Drink lots of water. At the first twinge especially, up the hydration. Consider cold or warm compresses on eyes, neck or anywhere you like. 🙂 Try an extra bath or shower or humidifier.

Be aware of food triggers and that you might crave the very foods that trigger migraines.  Its like I crave junk when I need proteins and fat so I try to plan options ahead.  Figure out what foods make your brain feel good.

I try not to skip meals or let myself go to sleep hungry.

Too much sun is a migraine trigger, but getting some sun can help to end a migraine episode. Mysterious vitamin D. I’m going to experiment with supplements, but I’m trying not to fear the sun.

Anyone else have any suggestions?

Her Selfies for Autism Acceptance Month

R. still likes taking pictures and videos of herself and I hope these show her sense of humor.

photo 1-1photo 2-1photo 3-1photo 4-1

If you’re happy and you know it

R. has been very into clapping and getting people to clap since Early Intervention. These days when she tells me to clap your hands, she means that she wants applause, and of course I oblige. Lately after I applaud, she says raise your hands, and then wants me to say yay.

I wonder if this is her way of saying, Mom, you’ve got an awfully flat effect. If you’d just throw yourself into things, you could enjoy this world so much more.

Maybe I do need to try to get more excited about the little pleasures in life. So I’ve been working on this. At the smell and taste of that first cup of coffee, I threw up my hands and said yay coffee. R. thought it was hilarious and encouraged me to say it again. I felt a little silly, and since I had to work at it, I can’t say that I’m experiencing the same joy as she is. But I did enjoy that coffee more than ever after cheering for it.

While there are many things that make her unhappy, R. is a happy person. It sounds almost trite to say that. Because what I really mean is that she can be so happy, it is like she knows secrets that I can’t even imagine.

Julia Bascom wrote a post, The Obsessive Joy of Autism, that I think should be attached to every single autism diagnosis. What if instead of being asked about R.’s special/restrictive interests by professionals, I was asked what brings her Obsessive Joy?





More information, please.

Most of the frequent articles and reports about autism are sensational and include little accurate information about autism.

Here in California we’re having a drought.  Every article about the drought contains at least a brief reference to how a drought is defined, how much rain we’ve had compared to previous years and suggestions for conserving water. Some say that many of the drought related articles are politically inspired, but the information is still there.

Maybe the drought isn’t the best comparison, topic-wise.  I’m sure everyone has heard that the actor, Philip Hoffman, died recently. A sad loss, and I am not trying to relate the topic of addiction, merely the information given in the articles. I learned more about heroin in just a couple of articles about Mr. Hoffman’s death, than I learned from reading 70’s rock star biographies.

There was another kind stranger autism article recently. A restaurant manager gave a mother and her autistic daughter a free meal after another customer complained about the child being too loud. Of course I applaud the support or acceptance that this stranger offered.  But I also resent the tone of these stories is that the kind stranger is doing a marvelous favor and paints the child and parent as a tragic situation.

These articles could have included an explanation about how self-stimulatory behavior, like yelling, helps people, and not just autistic people, deal with the sensory overload they can experience in public.  How about an interview or link to an autistic person’s account, like this post, Quiet Hands?

There are too many stories about autistic people, usually children, going missing, often with a tragic end. The public needs useful information about autism and wandering, especially when a news report is a about a human being who is currently missing. All news reports should contain descriptions of the missing person using respectful and meaningful terms.

Describing an autistic eight year old child as being like an infant is demeaning to the person and inaccurate information to provide strangers who are helping in a search. Tell us how the missing person is likely to respond. If the person is not going to respond to traditional communication methods, offer alternatives, such as the person’s favorite familiar items, songs or recordings. These details should be in articles about anyone missing.

I’d like to see law enforcement professionals answer questions like: How soon should a concerned parent or caregiver call when a child is thought to be missing? What about an adult? If we see someone who fits the description, or spot what may be an important clue, how should we respond?  How can parents and caregivers of children prone to wander keep our children safe and still encourage them to interact with the world? What kind of training is given to law enforcement professionals to handle situations involving people with disabilities who may respond differently than the general public?

I wonder if these details are left out of some articles because they are good bait for controversial comments.  There are many topics other than autism that have the same information and controversy challenges.  So this is me, stepping up onto my soapbox to ask for more accurate information. Don’t assume we know anything. Especially on the internet, give us links to define terms, not links to other articles.

I’ll keep reading and someday, the information will be there, and hopefully a new trend will be started.

Ipad Memory Games

R. loves memory memory matching games on the ipad. Here’s a short list of her favorites.

Amazing Memory Match has an assortment of memory matching games. The opening screen reminds me of the old speak and say dials. You can choose a picture (different animals, foods, transportation…) and get a game with pastries or dinosaurs. When a match is made the app flashes a picture of the item matched along with the word and speaks the word aloud. I think this is great for vocabulary development. There is a free version available with a limited number of games.

Miss Spider’s Tea Party app has a read aloud story, coloring, puzzles and a memory matching game. She’s had this one for a while now and just gets more and more out of using it.

Timmy’s Kindergarten Adventure isn’t the best educational app. While it does allow you to pick until you choose the right answer, it advances to the next level too quickly. And compared to other apps the graphics are dull. The best part about this app is that you can buy in app toys with coins earned for answering questions correctly. No real money is involved and it is fairly easy to earn enough to buy everything. There is of course a matching game. It has animals and makes the animals sounds. A light bright style toy is fun too.


She can play anywhere

Playing in a bathtub at Home Depot.

Playing in a bathtub at Home Depot.

Last summer we got rid of the stroller, and we’ve been able to do most errands and shopping as long as we are quick. We have been working on spending more time out in the community.

It can be difficult, but we’ll encourage her to touch appropriate things, choose her own items at the store and even play. We only let her play for a few minutes, and we’ll give her warnings and that seems to avert meltdowns, though she’ll often want to return to a favorite spot in a store.


Loving the purple curtains at Sears.

Loving the purple curtains at Sears.

We’re getting a lot of entertainment out of curtain departments lately. I am careful that she doesn’t make a nuisance of herself and we don’t stay long.

Dancing in the strobe lights at Spencer Gifts

Dancing in the strobe lights at Spencer Gifts

We went back to the same mall two weeks in a row and spent quite a bit of time in this store. Luckily it was empty and the same nice girl was working both times and she had no problem letting R. dance in the lights.

Finding peace with the IEP Process

R. has only been in school for three years and I’ve conveniently lost count of how many IEP meetings we have had. In some ways it is easier, I know what to expect and I’m able to manage the process as much as they let me. But it is always stressful to hash over all my daughter’s challenges and wonder if we are making the correct decisions.

An IEP is a document that is meant to be changed as needed. 

It feels like they are creating this master menu of all the potential for my daughter over the year and if I don’t get it right then she’s going to miss out on something crucial.  But an IEP can be changed at anytime.

R. has only had two teachers so far, but with each I talked to them about their willingness to make minor changes to the IEP without calling the entire team together for a meeting.

Everything on the IEP should be easy to understand and implement even by someone unfamiliar with my child.

It really helps to read through the IEP at times when I don’t have to. When there’s no major issues or an impending meeting I can be more objective.

The Present Levels of Performance section of the IEP is the first window to R. that a school professional will see.  I generally send my own list of strengths, abilities and weaknesses to the teacher prior to the IEP meeting. It is common that R. will show new skills at home before they see them at school and this information should be included in this section. I’ve never had them disagree.

There are many resources for writing IEP goals out there.

Cultivate relationships with the professionals on my child’s IEP team and inform them of my expectations regarding the process.

We have been lucky to have had nothing but good and great team members since R. started with public school.

I have the email addresses for the OT and ST at R.’s school and I communicate with them, asking questions and updating them regarding progress and challenges. I don’t do this too often, but I do feel like I’m getting the information I need from them. And when it comes time for the IEP meeting, I don’t feel like I’m meeting with strangers and they are not surprised by any of my comments or suggestions.

I also communicate with the teacher, again I don’t make a pest of myself but she knows my concerns and what has been working. I’ve always sent an agenda of my concerns, what goals I would like updated or added and any questions. With R.’s current teacher she has been awesome enough to see me for a Pre-IEP meeting. She gives me half an hour and I’ve been good about not going over––yes I have to watch the clock to make sure.

Educate myself and learn when to trust my judgement and instincts.

I’ve realized that I don’t need to have the common core standards committed to memory––and there’s an app for that. There’s actually a  mind-boggling amount of information out there like these goal banks:

IEP Goal Bank

DIR Goal Bank Handout

I speak to other parents and attend trainings when needed. Sometimes the hardest part is knowing when to stop gathering information for a while.  Thinking back to Dr. Greenspan’s analogy of development and building a skyscraper I have to be careful not to pick out the drapes before there are any windows to cover.




More of her self portraits for Autism Acceptance Month
















She has questions

For over a year now R. will occasionally take my finger and use it to point at something. She seems to be asking what the item is, so I tell her. It was random for a long time, she would do it once every couple of weeks.

A couple of months ago she started asking every day who particular muppets were on one of her favorite Sesame Street videos – A Celebration of Me Grover. Most of the muppets were just generic nameless characters. At about the same time she started to open Safari on the ipad and ask for Elmo. If you search for Elmo in Google and select images there are tons of pics of her favorite red monster.

It didn’t take long before she asked me to look up other Sesame Street characters and it became a new activity-her asking me to search for something and then looking at the pictures.

She’s also started watching some different shows-only on the ipad, but I’ll take it. She came to me with each show-– Backyardigans, Wonderpets–– nearly every single kiddie show and wanted me to name each character and look it up in Google.  I prompted her to use her own finger and say Who is it. This has become a favorite activity, so she picked it up quickly.

Now she’ll come up to me all the time, point at the picture and say Who is it. And then I have to look the character up in Google. I’ve learned all kind of names. I now know that Caillou’s mother’s name is Doris. How fascinating that she even wondered about that. She was upset that the boy in the cat in the hat has no name. And I’m amazed that she figured that out, I never even noticed.

She has been very into Sid the Science Kid, and one of his phrases is I have a question. R. repeats this, sometimes out of context but often she’ll walk up to me and say either I have a question or just question. And then she will ask a question!

An example of an exchange:

She walks up to me and says Question.

Me: Oh you have a question? What’s your question?

She tugs on my hand and says Come.

I remove my hand from hers (I’m working on trying to remove her touching me from her communication.) and say OK, I’ll come with you. I follow her to the stairs where she has a bunch of stuffed animals lined up.

She points at one and says Who this?

I say That’s a cow.

She walks away, retrieves the ipad, opens up Safari and points at the Google search window and says That’s a cow.

I search for cow pictures for her to look at.

The teacher suggested that I have her type in her search requests, even hand over hand. Sometimes she’s impatient, but after weeks of doing this it seems like she can spell some of her favorite searches on her own, I’m just sort of holding her arm for moral support.



Elmo’s not looking so good

At least he has his nose

It started with a small hole in his chest that R. couldn’t resist yanking stuffing through. And then she destroyed the arm.But she doesn’t seem to mind that it is missing. She can still make him clap.

I warned her that his eyes would come off permanently if she kept chewing and pulling. But I don’t think she understood, or maybe she didn’t care. She came to me when the eyes finally lost hold and said eyes over and over again for the next few hours. But she didn’t cry or even whine. And now they are forgotten.

I’ve had a back up Elmo on hand for years now. So when she went to school the next day I hid away eyeless Elmo and took out the new one. She greeted him happily at first. But after a few minutes it dawned on her and she screamed and screamed for Elmo.

I realized at that moment I had to make a choice. I could stand my ground and eventually she would stop crying and either become attached to the new Elmo or not. But I just couldn’t do it. There are so many instances where it is a matter of safety or something and I have to stand my ground. It seemed unfair to deprive her of a beloved comfort item because I think it looks bad. So I gave it back.