Sunday, May 13, 2012

A Very Very Happy Mother's day

A very very happy mother's day to all mothers

To those whose kids will make cute little cards and presents for them

And especially, to those mothers whose children won't .

Some of you will have husbands that will get you flowers

But some of you will not even have husbands

For they left when things got hard

 And your marriage was not the way it used to be in too many ways to count

( And sometimes,  in the night, you go from the place of being angry with him. And  you find yourself  in a place where you blame yourself for his leaving, for you know you have changed.

But you dont know how to find your way back to the girl you used to be, with her lightness and her flirting and her non-blaming ways )

Some of you will have children who show their love in a million ways, if not through cards

But some of you will have children that cannot show their love

Today will be like any other day where you may change diapers of children who are long past the diapers of  the cute cartoon figures .

You will cook and clean like every other day

But today you will also hide from Facebook

And you will try not to go outside

 Or turn on your television

Because everything, will conspire to remind you of all those cute moments that you try so hard  not to want

Mother's day to some of us  is the Valentines day of the mate-less and the Christmas of the loveless.

Like,  as Dani said in the post I linked above, you  got a million post cards from Italy

To those mothers, I am sending you heartfelt hugs and wishes

Just because you did not get thanked in the Hallmark ways, does not mean that you are any less of an amazing mother

For to continue day after day like you do

You, with your endless love

And your IEP-praying, online-researching, therapy-planning, worrying-if-you-are-doing-enough ways

Makes you an amazing mother

So give yourself a present

Try this year to not constantly evaluate your own performance as a mother

Be a little kinder to yourself

If you are alone on this road

Or if you feel alone on this road

Be your own best friend

Happy happy mother's day to you

You are an amazing kind of mother

The very best kind of mother

Say to yourself

I heart me

Friday, May 11, 2012

The Beginning of Summer

Lovely lovely summer is here

Slacker mom 

I have been SUCH a slacker mom - work has been frightfully busy and I have done so little floortime

A lot of snuggling and relaxing and being a couch potato

Even though R's idea of relaxation is really all of us on the couch - he will often insist "watching TV "and he will also veg out with his computer

Honestly overall I feel a much greater satisfaction and happiness and connected-ness when I am more active with him

But someday I just don't get around to doing it

I get busy with springcleaning and with watching TV !!

Outside Time

But because the weather has been mostly good - we are having a simply lovely time being outside

Surely no one provides more sensory opportunities than Mother Nature

The Olfactory

One  thing we have often noticed about R, is his great ability with smell and more importantly the pleasure he gets from it

DH and I are trying to discourage him from smelling people as it may seem rude but for everything else he can smell away !!!

"Only smelling Things and Family " is what we tell him.

I just want to thank the autistic woman who wrote "Quiet Hands" and made me feel okay about our practice of never discouraging R's unique way of experiencing the world  ( have you read this article ? if not please do !)

When I come back from a work trip, he will often smell my hair and say "Marriott " and in fact he will often be correct
I have taken to never using the Hilton shampoo.

It makes him feel betrayed as Hilton is a favorite

There is always the bad side of being hypersensitive of course and I wonder if his food-anxiety has to also do with smell

A tomato leaf - which he is equally fascinated by-  and insists I pluck and get from the garden -will make him cower( with hands over his ears )  like this

How interesting that a strong smell is like a shout !

His own developmental trajectory 

R is developing in his own way

5 years ago I would have thought that development would be moving closer to typical - but its not the case

R is autistic AND R is blossoming

Usually when we take R somewhere, we come armed with ipad etc - this weekend we had a hectic social calendar ( very unusual for us ) and we decided to go sans electronics to one of them

While it was not as easy for us as it usually is - it was interesting to see that R is more and more able to find other things to do- like play on the piano

Or make number patterns

Like this on my phone -

 here he is making a number pattern like he always did - but now he is using addition and subtraction - rather than just the numbers themselves ...


Or write out the Wii Menu in French ( I think)

Menu de

Or make silly rhymes and giggle uncontrollably ( the fat rat pats the hat )

or making observations about how

"mom loves to read and eat chocolate and how lad loves baseball and soccer"( mighty accurate if I may say so )

A weekend trip 

We went to one of my good friends house- they have a river in their backyard which is so beautiful

We noticed with amusement how he would find areas of rest for himself - in this case the dog crate :-)

We have a good IEP meeting - we are continuing with half special ed class and half mainstream.

I like our school - they are sweet and positive and try hard - like many schools in our area our resources are severely limited

We looked at some psych testing on his intellectual abilities - and the re-diagnosis that needs to happen every 3 years ( this is essential to continue with his support for autism

 How different this feels than the diagnosis at 3 - we are so much more aware now

This would have been hard to listen to , but the psychologist was really great and talked about how the tests are not very good

He also made many observations on identifying patterns that R has outstanding gifts in - while in reasoning he scored very poorly  and in math and reading he scored averagely

He observed that in one set of tests he just went down the list doing a yes-no-yes-no pattern- since he was bored with the test

He also said that he really enjoyed working with R and that the challenge will really lie in us accessing his gifts - because of all the problems of language

( DH and I made a mental note to write a social story on why trying your best in tests is important )

Whenever I write a positive post about school - someone will write to tell me how I need to take my rose colored glasses off - and the school will actually really be mean to you if you try to ask for anything

The thing is that I dont think we have rose colored glasses on - there really are very limited resources in our school district ( in one of the districts they thought that they would need to cut the school bus !!)

Our special ed teacher that we are leaving this year is AMAZING - I have seen her on a pumpkin patch trip literally carrying a child who had anxiety ( a tall heavy child too- not a baby  ) and was being clingy

Just the fact that R goes to school in a place that welcomes him, is something that DH and I  really appreciate

We all know he is bright and has many gifts ( like all children ) - though DH and I wonder how he will get through school

Still the trick of raising a child like R, is to remember that its his life and that our job is to help him lead his best life -( not our best life )

And to always wrap him in our love and approval

For to walk in the glow of your mother and father's approval is a lovely thing

Its to walk in light

Friday, May 4, 2012

Autism on Vacation

Vacationing – can be a time of stress for parents with children of special needs- as many of our kids are unhappy with change

Yet DH and I vacation and travel rather a lot !

We like going new places and we also think R’s horizons are broadened because we travel so much

Here are some tips from me  and from my friends based on many vacations we have taken

Managing  our own  expectations

One of the true pleasures in parenting is seeing our child experience joy.

However, we can forget that our kids have  a unique way of looking at things – what we imagine to be enjoyable to them, may not be.

I asked R the other day if he remembers where he was in Christmas last year

Doubletree hotel !” he answered, a smile lighting up his face at the memory 

What he did not say was that while we did stay at the Doubletree hotel- where we had spend the day was in a place that is a dream destination for most children - Disneyworld’s Magic Kingdom

I and DH smiled at this today

But on that day, I remembered that feeling of disappointment when we had   waited and waited  to get in front of the crowds to watch  the once-upon-a-time parade and our child did not  gasp with wonder- 

All he did was to  remind  us that after this, he is “all done magic kingdom

Plan some activities that your child will enjoy

In our case we usually plan to stay in hotels that R loves and that have swimming pools
Simple sensory activities – even if it’s a leisurely bath in the hotel bathtub will regulate your child


Find some tools that will help you be patient

You could even have your own mantra

“Repeat to yourself...He's doing the best he can…. Or say to yourself ..Sniping hurts his self esteem….Something that brings X’s   basic needs to the forefront of your mind so that you don't get panty-twisted by his actions.” Says Kellie

"The thing is, at least with Z, you cannot have any expectations. We struggle when we travel because DH and and L (and me, too) want to do everything we possibly can in the time we have wherever we are. But that's when I lose Z.”Says Debbie

Provide islands of sameness

We make sure we bring along R’s numbers wherever we go.

 At Disney he would often take breaks and play with the numbers and do addition and subtraction when the crowds got too much  

We also try to make sure he has his electronics

Though one friend of mine disagreed and says she likes to go vacation sans electronics

On the one hand, it's their vacation, OTOH, for some kids like A, electronics are the surest way to shut down observation, mental engagement etc.
Here is my own bias : in years past I've been more liberal, and as a result, A shut himself off to everything because he was obsessing over the electronics, and the entire day became about having access. I don't think he can have a measure of "healthy use"- it's an all or nothing thing for us.
When we went skiing in the winter, I deliberately didn't take any level 1 obsessive handhelds - and that ended up being a good thing- since he didn't have his DS, he had no choice but to play with his sister, talk with his cousin etc. More importantly, after the initial disappointment, I really didn't get the feeling at all that the lack of DS was in any way detrimental to his self regulation or even good time (I had it in my purse in case of an emergency but never brought it out- to this day he doesn't know I had it all along).
This summer will be challenging for him because we will travel a lot- but I'm planning to do the same. He can take his i-Pad but nothing else. I will encourage him to listen to music instead.
Says Lillian

Keep  family visits reasonably short

 “Y is like a 2 yo with the motor skills of a nine year so he can do a lot of mischief if left unsupervised. For example, he make take someone's medication or use someone else's toothbrush etc. At least in my home, I have it under control and I have some form of respite with school or ABA. When I visit family I have to  be on him 24 7 for the whole visit” says Purvi

"We've kept our visits home short. I hate not to visit, but after a few days, we need to go. We usually stay with my parents, and their place is tiny, so there's not much to do if we can't get outside. I think we will try staying at a hotel next visit."  Says Ellen

Try not to feel bad  with those that don’t understand your child’s special needs

And don’t feel self conscious about the extra effort you need to take
Autism Civilians just don’t understand how it is for us” says Debbie

“ … no one understand that my kids are obsessed with electronics and insist on leaving them out everywhere… then they get mad at me when my kids are touching their phones, ipads, etc. No one understands how vigilant you have to be. Heck, we had a code Adam at the Children's museum and that was when we had 4 adults with 3 children. They mock me as a copter mom and think I'm ridiculous. And yes, Z has gotten into someone's purse and taken their medication” says Meg

Don’t forget yourself

Make sure to not to ignore your own needs and the needs of the rest of your family . 

You deserve to enjoy yourself too

“We have to say that I have a pretty selfish POV when it comes to vacations. We work hard all year , we have very little time off, so vacations are usually planned around what we want to do, not necessarily what is best for A . Because if it were up to him, he would never leave the living room except to go to school. Usually he hangs in there, often times reluctantly, when it comes to seeing new places (though we have been guilty of springing new stuff on him just because an opportunity came up- well....he'll have to deal with that once in a while too). 
I keep telling myself that the autism will still be there next week, but the (vacation place) won't.”
Says Lillian

Make it Easy for yourself

We used to stay with friends and family, but as of about 2 years ago it started to become really frustrating. All of the kids in our cohort were aging out of the "roam around the house randomly destroying or getting into mischief" stage while A is still in it full swing. So we do not go visiting as a family nearly as much as we used to. When we do, a hotel is a MUST.

A hotel obviously has far fewer chatchkes, everything can be cleaned or fixed. It is so much more relaxing for DH and I b/c when A  is over at another house, one of us has to be shadowing him at all times. He is so curious and well.... you know. … says Karen

Planned Downtime

"it’s like there have to be certain anchors in place. Landmarks. Rest stops of familiarity and even perseveration-oriented. Like the breaths in between the contractions and pushing, a time to catch your breath before you have to move forward and endure once more."
Says Deb

Plan a retreat area for your child
Many of my friends stressed the importance of an “escape area" for the child – a  place that they can retreat to if the pace feels too stressful

“I think I should bring his little pop up tent beause then he can escape when he needs too and still be part of our group vacation.  Says Danielle

 We  must have a larger area. Although we are only a family of 4, we often try to rent a 3 bedroom unit so D can have his own space. “Says Amy

" Whenever we go somewhere, we allow L to scope out an area where he can retreat to have "alone time" to regroup. Sometimes it's his cousin's bedroom, away from the rest of the family. Other times, it's a bathtub in the hotel. Just somewhere he can go for solitude.” Adds Kellie

Make sure your special needs child has what they like to eat

Eveyrthing is less stressful when you are not hungry or sleepy

DH and I always looks for hotels or VRBO rentals that have a little kitchen and frig

“I think the key is having a kitchen or access to familiar foods. I don't believe in introducing new foods on vacation. Too stressful for everybody! “ Says Purvi


We never travel without planning a schedule

But even better are some of my friends who plan well in advance

"Priming is key . We showed Y a map of the Bahamas. I also showed him on a map that we will stop in Atlanta first. He was upset about the layover, but did a lot better bc at least he expected it. I also showed him pictures of the resort and told him there was a big lazy river." Says Purvi

Christine adds “I highly recommend social stories for firsts, like riding on a plane. I made a social story, including pictures of the inside of an airplane. I wrote about every detail from riding the parking shuttle to picking up bags


Some kids on the spectrum do fine  without structure

“Traveling is a delight now. It's free time away from therapy, pressure, peers who confuse him, feeling isolated, and being corrected 10 million times a day. “ Says Kat

But for most kids a well structured day is critical

“I asked him to make a schedule for the day. He got to plan it with a little negotiation and we pretty much stuck to it. We even wrote down what we will eat for our meals.”
Says Purvi

Develop a thick skin

Remind yourself not to worry about any odd looks that people give you if your child

We only stop R from doing things that are truly rude or hurtful to him

 I try to think of the impact our attitude has  actions have on R and the kind of mother I want him to remember having

Then   the two people who are looking at him "oddly"  as he is making an eeeeee sound or cooing over a plastic number becomes a tiny annoyance , not something that actually hurts you

For me, when I feel that way, it is all based on fear. Mostly fear of me and my children being judged and fear of the future.
And for me, the only thing that has ever made a change in my interactions and in my real feelings is letting go of the fear. You let go of fear and you let go of the need to orchestrate, control, see the future, steer, guide, shepard, change, improve, etc. ,etc. ,etc
Says Karen 

This post has been written for Hopeful Parents and will be published their tomorrow. Floortime Lite Mama has been helped by her Autism sisterhood. Thank you Kellie, Purvi, Lilian , Christine, Kat , Kellie, Amy Danielle, Ellen, Debbie, Karen, Meg and ofcourse my DH 

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