Stand out or fit in??

I was thinking about this quote today, and wonder is it really accurate or do we really not want to fit in? Just fit in.  I understand the concept of trying to be yourself and wanting to "stand out".  But when you have a child with special needs sometimes, at least for myself, I just want him to be able to carry on in the day like typical peers mainly because I don't want him to stand out so much that he's targeted or made fun of or laughed at just because he's misunderstood by other people. It's a great thing to be able to just be yourself and I totally get that.  I'm not saying that you shouldn't just be yourself. But sometimes, even adults, can look at other adults with differences and poke a little fun between friends about it or just stare at them and I don't want that for my son. So I'm a little torn about this because I see it very often in the Autism community.  And it is a beautiful thing to just be yourself and stand out but not so much that it's at the expense of the individual. I worry about that a lot. Maybe I shouldn't, but I'm his mom so I'm always gonna worry.  And I get telling your child "don't worry just be yourself.  Don't care what anybody else thinks". But if I were standing on the sidelines and watching someone making fun of or staring at my son, I would get angry.  I've seen people when we're out staring at him because he's acting little too quirky than he probably should or he's loud or he's being way silly and doing a lot of stimming and it frustrates me that they stare at him.  But they don't get it.  They don't understand it.   I guess I shouldn't care if they don't understand.  I could say, don't worry about it, we're never going to see those people again. But I'm not just talking about strangers; I'm talking about school and work and relationships. I know it should be socially acceptable, but I don't think society is there yet. I think there's way too many people that judge a lot of the behaviors people, kids and adults, on the spectrum have because they don't understand.

Back To School Night

Since school started I have been in contact with 'Milo's teacher almost daily.  Yes, I am THAT parent.  I always have questions.  Thankfully the teacher is very understanding and very responsive.  She never makes me feel like I'm being a pain in the butt!  
On back to school night I was excited to finally meet her and see the class.  He's in the AutCore program at a public middle school.  The program is new there, so there were concerns.  Will they know what he needs and will they be patient and understanding?  Will they understand how he learns?  But my son was fearless going into this and he is loving school.  
His teacher is very sweet and was very excited to show the parents what the kids are doing and how they are doing.  She had a powerpoint presentation which she said she uses for teaching.  She said the kids love the graphics and moving gifs saying it keeps them engaged.  She told us that she herself has a daughter who is on the spectrum who is now an adult.  That's when I realized, she really does understand.  I couldn't believe it.  I felt so luck to have a fellow Autism parent teaching our kids.  Someone who has been in the ranks just like us.  She explained that she is very protective of our kids and looks after them, not just in class.  She told us for the two periods our kids are in other classes, she teaches 8th grade math and has introduced these kids to our kids and has them looking out for them during nutrition and lunch.  WOW, I was BLOWN away.  She mentioned how our kids were having trouble at PE with the lockers and getting ready quickly and out to class on time that she requested two aids to assist during PE for them.  I was thoroughly impressed.  How could we have possibly gotten so lucky.  I felt compelled to write the Principal and V. Principal a letter

Dr. C and Ms. B

I attended the back to school night last night and would like to give you my honest feed back on my child’s teach, Ms M.  Can I just tell you, I feel like I have struck gold!  You really have yourself the best fit for the AutCore program in my opinion.  Her openness to the parents was such a relief as I and other parents that I talked to last night, have been SO stressed about our Autistic kids starting 6^th grade.  As if a new school isn’t hard enough, they’ve had to remember 2 locker numbers and the combinations, Meal PIN numbers, changing classes, bigger campus…. It was so overwhelming the thought of, “will my child be safe?”.  I truly believe that he is.  She really gets our kids and many of the parents I talked to last night echoed the same.  She understands what they need to be motivated to learn.  If I didn’t already feel that P H was a good fit for my son, Ms M would have convinced me last night.  I was already happy with the school choice we made, and Ms M is the icing on the cake!

It's was such a relief to know that the teacher has our kids best interest in mind.  I don't think things could have gone better.

Light bulbs and meatballs

I work in the lighting industry.  My department provides lighting and lighting maintenance to our customers.  As customers go, some are very easy to deal with while others can be challenging.  At times I think to myself "geez, it's just light bulbs people...no need to get snippy!"  But then I have to take a step back and say to myself, it's their job to make their store/office/restaurant look good and they are relying on me, so suck it up!  After all, it's my job to provide this service. 

On one such day I was dealing with a very particular customer.  This customer is not the type of person that throws around the warm fuzzies, but I sucked it up and did what I needed to do.  It never seems to be enough for this one customer.  I've had what I would considers some significant struggles in my life; I've had cancer and had to go through Chemo, I've been through a divorce, I deal daily with a child with Autism, so it can get hard for me to suck it up at times when someone gets this bent out of shape over lighting.  But again I try to refocus my thoughts and see things from this customer's prospective and SUCK IT UP!  Do my job. 

It was on that same morning that my son was looking over the menu for school... "Spaghetti and meatballs!  I'll eat at school." he exclaimed.  Thanks goodness!  One less of a hundred other things I have to do that morning.... I don't have to pack him a lunch.  Easy enough.  On this same morning I was borrowing my mom's car because my car had broken down the day before (like I need that in my life).  Because of this, she would have no way to pick him up after school, so I was going to pick him up and take him home on my lunch hour.  As we drove home and talked about his day, I asked him if he ate his lunch and he said sadly, "no, a girl took it".  
Jumping to conclusions, I said, "WHAT?! What do you mean?  She took it from you?"  
"No" he said.... 
"oh so she was in line in front of you?"  
"yeah"  
"OH, so she took the last one?" 
"yeah".  
"Well, did you eat anything?"
"yeah, I had the bean burrito.  I ate half of it"
"Well next time, ask the lunch lady.  Maybe they were going to bring out more and you just didn't wait.  Next time, just ask someone" 
"ok" he said, but I could tell it still bummed him out and he wasn't listening to the solution I was offering if it happened again.  So I dropped him off and told my mom to give him a snack before the therapist got there figuring he would be hungry from not being satisfied with his lunch and made my way back to work.  Knowing little things could set him off, but never really knowing when or how big of an impact it will have on his mood, I called my mom after I knew the therapist would have arrived.  I asked her how he was doing, she said "he's telling her about the meatballs".... "OH BOY! it's going to be one of THOSE sessions" I said.  Whenever this happens I worry, but I'm at work and I have to work because people need light bulbs.  But my son, what if he has a melt down and I'm not there.  I want to help him and I need to work, but I can't just run out over meatballs!  Still I wait.  I wait and work and help customers, all along thinking and worrying about my kiddo. I take a moment to text "is he OK?"..... reply.... come on, reply..... "yes, she talked to him about it and now they're reading"  WHEW!  OK  I fell better now.  Back to light bulbs.
I get home and they are working on homework.  He seems fine and had a good session.  After the therapist left we had dinner and did all our nightly rituals; reading, showers, TV, snack, and brushing teeth before going to bed.  Oh but wait for it.... he's sitting at the table having his snack when he says, "I'm so angry".  "Why?" I asked, and he says "that girl!".  Oh for crying out loud!  But just like that customer with the light bulbs, when the expectation wasn't met, #fail!  I mean, come on, it's just meatballs!  But once again, I had to suck it up...suck it up because he is this bent out of shape over meatballs.  And again I try to refocus my thoughts and see things from his prospective and SUCK IT UP!  Do my job.  I talked him off the ledge again, over meatballs.  Because logic just doesn't cut it for him sometimes.  And trying to explain to him that its not a big deal and to "get over it" doesn't really help.  To him it was a big deal.  His routine didn't go as planned, and we are working on flexibility, but it doesn't come easy for him. 

So for now, I'll continued to help him work through the little unexpected things that can throw off his routine...and of course, I packed him meatballs the next day for lunch :)

Dance baby!

So once a month 'Milo's school has a dance during lunch...the first one was last Friday. The kids pay $2 to get in and they have a live DJ that spins. When he heard about it he was excited and said he wanted to go. Mind you, his classroom is only about 10 students or so that are in the AutCore program. Only 1 girl, statistically pretty right on mark. The kids in his class all eat lunch together but at the same time as all the mainstream kids. They don't interact too much with other kids just yet as it's still early in the school year; the AutCore kids all kinda just stick together. But still, 'Milo wanted to go to this dance, so I gave him $2 today when I dropped him off at school. Anxious to see how it went, I called my mom right after school was over. She said he was telling little brother that he went to this dance at school and it was so cool and so fun. This made the little one so excited to go to Middle school, which is still 2 years away for him. She passed the phone to 'Milo:
Me: "Hi son. Did you go to the dance today?"
'Milo: "yes"
Me: "did you have fun?"
'M: "yeah, they played Sugar and Harlem Shake"
Me: "did your friends go?"
'M: "no"
Me: "Oh...did you dance?"
'M: "yeah"
Me: "with a girl??"
'M: "no"
Me: "by yourself?"
'M: "yeah"
Me: "Good for you! I'm so proud of you! Are you going to go to the dance again next month?"
'M: "yeah!"
I admire him so much. Just went out there and did his thing and not embarrassed to do so...especially at an age when most kids can be self-conscious and not want to stand out, or on the flip side want to be cool by putting others down. Who knows if anyone was staring or laughing; the point is he wanted to dance and he did, even if he did so alone. It's more than I can say for most people I know including me!
‪#‎JustDanceBaby‬ ‪#‎BestTwoDollarsSpent‬

And then there was Middle School

So the time had finally come.  It was orientation day for Middle School.  It was a full day of getting class schedules, locker information, text books, ID pictures, spirit shirts.  'Milo was happily going around checking out the new surroundings.He practiced his locker and got to visit some of the classes.

 
 So on the first day of school I asked 'Milo if he wanted me to walk him into the school on the first day, he said no.... I said, do you want me to take you to the gate where the aids pick up the kids from the bus or do you want to go through the front of the school to your class, he says "I'll go through the front, don't worry, I'll be fine." <sigh>, he's such a big boy 
 

During summer we had an ABA session that went well for the first couple of hours, but then he was clearly agitated. He started hitting scratching the therapist and scratching himself. She thought maybe he was mad because the lego Jurassic truck was broken up, and she told him they can put it back together, but he was not having it. She finally got him settled, but I could tell when I got home that day he was still in a mood. So I told him to go lay on by bed and I would put a cold towel on him so he could calm down. Once he was calm I said, "OK you need to come and pick up the stuff off your floor in the room and put them away", he had knocked off all his dinos from his shelves and that's when I saw it.... the Jurassic legos got put in the bin during clean up time and 'Milo didn't handle it well. He saw the bin and said, "I just want to smash the box" I said why (of course knowing why, but I wanted him to use his words to tell me), he said "because those don't go in there. They should to go there", pointing to his book shelf. I said, "OK so this is when we need to be flexible. It's OK they are in the bin. But if you don't want them there, you don't need to smash anything, you just need to say what's bothering you. This way people know what you want. They don't know when you are throwing things or hitting them. That's not how you should communicate, you need to use words. Finish putting the dinos up on your shelf and they you can put these legos where you want them." Once he finished cleaning up, he put his Jurassic legos where they "belong". Then he was happy. Completely happy.
I'm sure it was completely unintentional by the therapist, otherwise she would have known why he was upset. I'm sure she didn't know they didn't "belong" in the bin and was just putting the legos back where all the other legos go.  
‪#‎autism‬ ‪#‎flexibility‬ ‪#‎ABA‬ ‪#‎CARD‬ Center for Autism and Related Disorders

All summer long I've been leaving the boys school work to do during the day. With 'Milo not in summer school this year, I wanted to be sure to maintain some structure as well as keep his mind fresh and start introducing some subjects that he might see in the first year of Middle School. He's actually very enthusiastic about it and is always looking forward to the work I leave for him. He's doing well with most of his math, but has struggled with addition and subtraction; despite the fact he has his multiplication and division down. He's easily frustrated when he gets them wrong, but he tries his best. 
One day, I get this text from my mom: "I must admit, D is very patient helping 'Milo with his math. It's so cute to watch. He told him 'when you're taking your test, pretend it's me testing you and that will keep you calm'. I wanna cry. 'Milo got them all right!"
I told my little one that I was so proud of him. I told him, I know your are the little brother but sometimes you take on the role of a big brother and I thanked him for being such a patient and loving brother. His little eyes filled up with tears and I said, why are you crying? He said, "they are tears of joy"
So that day after dinner, I took him out for a special treat, just the two of us. I know its rough on him sometimes. It's not uncommon for siblings of kids with special needs to feel overlooked. So when my son shows this much compassion for his brother, completely on his own, I have to acknowledge to him how proud I am of him. And and little ice cream doesn't hurt
‪#‎autismbrother‬

Feelings

We went to see Inside Out this over the summer and we loved it. I loved it not just because it's another cute movie from Pixar, but it has 'Milo talking all about his feelings. He talks about everyone's feeling too, including the dogs and dinos :)
I thought about making a feelings chart for him as an incentive, but I was sure someone else had already come up with something, and sure enough I found this site: http://www.busymomshelper.com/…/today-im-feeling-printable-…
So cool!! So of course I went to work and put one together. He loved it. I hope it encourages him to continue getting his feeling out in words, rather than behavior.

The end of Elementry

  \It was bittersweet, but he did it!




The school year had finally come to an end.  'Milo was so excited on culmination day.  He did great too sitting through the long program, singing songs and finally receiving his certificate of completion. 
Soon it would be time for middle school, which he was also very excited about.




Honestly, I have not been looking forward to it.  But we had toured a school and liked it.  It looked like a good fit for him despite the Aut program would be new to the school.  But we felt confident and comfortable that he could do well there.  
Well, here goes nothing....TBC

20-some years ago, my cousin was diagnosed with Autism. I remember when I first heard. I asked my mom, what's that? She said she didn't know. I don't think any of us really did. It wasn't like now where you can just Google anything. There was no research available for us to do on our own. His mom and I are the same age and at the time she was living so far away from our very large family. I can't even image what it was like going through it all that far away from home. And now here we are, 20-some years later and still no concrete known cause or cure. And it continues to grow with more and more diagnosed every year. And those of us that are caregivers continue to press through, aimlessly as it feels at times. Even with all the progress in treatments, it seems like we're still so far from seeing the end of Autism as we know it. So we keep doing what we're doing to make living with Autism "livable". ‪#‎AutismAwareness‬ ‪#‎ThisIsOurNormal‬

My work-free, autism-free, kid-free, Lisa only day

A couple of weeks ago I hit a rough patch.  Between preparing for middle school, upcoming IEP, bad ABA session, I was feeling pretty worn out.  But as usual, I go to work, press on and move though life.  But on this particular day, my manager got me in a bad moment.  We were just having conversation when I broke down in tears at work.  I hate that.  But she didn't judge.  She's knows what I'm dealing with and she's amazingly understanding.  She said, "You need a day off.  Every time you take a day off it's for your kids, your mom or school; you need a Lisa day!  Take a mental health day and go get a massage.  Don't tell anyone, just leave in the morning like you're coming to work and take the whole day off for yourself"  Can you imagine that!?  It was so refreshing to just be vulnerable and allow someone to help me thru a rough moment.... I don't like asking for help.  But you know what, everyone deserve a little help in their life once in a while.  She said, "by tomorrow, I want you to come up with a day that you will take off, and it has to be soon... not 3 weeks from now, not a month from now, but like in the next week or two."  Then next day I came in and found a note from my manager with a purchased massage that said "for your Lisa day, from your friend, not your manager".  WOW.  Such a wonderful gesture and I'm so thankful to be blessed with wonderful friends.
So today, I had my Lisa day.  And it was wonderful.  After I dropped off the kids at school I went to Starbucks in the morning, got myself some coffee and a croissant and sat and enjoyed it.  Not feeling rushed, not thinking about anything work or home related.  Just sitting there enjoying the time.  From there I drove out to Valencia and did some window shopping, taking my time till my massage appointment.  I hadn't had a massage in years and it was such a treat.  It was ridiculously relaxing.  It really got rid of the stress I had in my shoulders for the past few weeks.  After that I had some lunch and drove back to the valley.  Went to the mall and did some more window shopping.  Stopped by a new store and just went in to look around, but ended up buying a dress for a wedding I'm going to.  Went and got a Jamba Juice and sat outside enjoying the nice weather till it was time to go home.  
It's always hard for me to make time for myself.  Even when the kids are gone for a weekend I always end up doing loads of laundry, researching stuff, running errands and never really do anything "me" related.  But it's like they say, you can't take care of other people if you don't take care of you first.

Middle school... bleh

A few weeks ago we had parent/teacher conference for 'Milo. Overall, the teacher had a pretty good report for him. He said he is doing well in Math and has made real improvement in his spelling words (heck yeah, we worked HARD on that one!). He did say he needs to improve his reading. He does read everyday, so we just need to get his reading speed up. He also said although 'Milo qualifies for Summer School, he didn't feel that he was in any real need for it. I'll have to admit, I agree with this one. Last year, the Summer School teach he had never sent home any homework. And the work I did see, was review of past grades and not much of his current grade. The teacher said he didn't have any concerns for 'Milo regressing over the summer. So this will be his first summer off... aside from the work sheets I'll leave for him to do during the day.
Then the dreaded topic came up: Middle School. I can't believe it's that time.
The teacher had the school 'Milo has been assigned to. The school has an all-Aut program; some school Special Ed programs consists of ALL disabilities. He explained that he would be assigned 4 classes; Math, Social Studies, History, Language Arts. Then he will have a home room, an elective and PE. That's when my stomach dropped. PE. I hadn't even thought about that. Changing in a gym locker room with other boys. Will he remember to put away his clothes/glasses/shoes in his locker? Will he remember his locker combination? Will he be picked on by other kids if he can't get the instructions down during PE? So many things go through my head that make me want to quit my job and go to the school everyday to keep him safe and protected. Obviously that is not an option. But I've had this sick pain from worry in my stomach since then. ‪#‎AutismMom‬ ‪#‎ThingsThatKeepMeUpAtNight‬

The story behind World Autism Awareness Day

I was listening to Autism Live a couple of weeks ago and Shannon explained how World Autism Awareness Day came to be. I found it really interesting that is was implemented by the United Nations who UNANIMOUSLY declared April 2 as the day. Here is the decoration from the United Nations web site:
"The United Nations General Assembly unanimously declared 2 April as World Autism Awareness Day to highlight the need to help improve the quality of life of children and adults, who are affected by autism, so they can lead full and meaningful lives."
"World Autism Awareness Day
The General Assembly Recalling the 2005 World Summit Outcome
and the United Nations Millennium Declaration, as well as the outcomes of the major United Nations conferences and summits in the economic, social and related fields, Recalling also the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, according to which children with disabilities should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community, as well as the full enjoyment of all human rights and fundamental freedoms on an equal basis with other children, Affirming that ensuring and promoting the full realization of all human rights and fundamental freedoms for all persons with disabilities is critical to achieving internationally agreed development goals, Aware that autism is a lifelong developmental disability that manifests itself during the first three years of life and results from a neurological disorder that affects the functioning of the brain, mostly affecting children in many countries irrespective of gender, race or socio-economic status, and characterized by impairments in social interaction, problems with verbal and non-verbal communication and restricted, repetitive behaviour, interests and activities, Deeply concerned by the prevalence and high rate of autism in children in all regions of the world and the consequent development challenges to long-term health care, education, training and intervention programmes undertaken by Governments,
non-governmental organizations and the private sector, as well as its tremendous impact on children, their families, communities and societies,
Recalling that early diagnosis and appropriate research and interventions are vital to the growth and development of the individual,
1. Decides to designate 2 April as World Autism Awareness Day, to be observed every year beginning in 2008;
2. Invites all Member States, relevant organizations of the United Nations system and other international organizations, as well as civil society, including non-governmental organizations and the private sector, to observe World Autism Awareness Day in an appropriate manner, in order to raise public awareness of autism;
3. Encourages Member States to take measures to raise awareness throughout society, including at the family level, regarding children with autism;
4. Requests the Secretary-General to bring the present resolution to the attention of all Member States and United Nations organizations."

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A Note of Thanks

To the nice nurse who helped treat 'Milo in the ER last night, THANK YOU!

It all started with a call from the school that 'Milo was coughing and coughing and needed his inhaler.  His asthma was acting up again.  The second time in two weeks.  So I got to the school with his inhaler and decided to take him to his doctor.  The inhaler seemed to be doing it's job while we waited.  She saw him, checked is vitals and he seemed to be doing good.  We got him some new inhalers and went home.  Everything seemed fine. 

11:30pm came around and the coughing began again.  I could hear the wheezing, and shortness of breath.  Not again!!  My poor little guy.  I hate to see him going thru this.  I didn't want to take a chance, so off to the ER we went.  It was unusually light at the ER; only a few people were in the waiting room.  I checked him in and they wasted no time and took him in right away.  He got settled on a gurney and the doctor came in to give him a quick check.  It was clear his breathing was not well.  He ordered a breathing treatment, check for flu, X-Ray, blood work and IV then went on his way so they could get started.  It was then that our nurse came in.  She listened to his breathing and let him listen too.  He was amazed by this. She was very nice and explained everything very thoroughly.  She then came in and gave him a stethoscope of his very own.  His face lite up.  It was time to get started.  They put a mask on him to start the breathing treatment and the nurse told him, "we need to take some of your blood now".  He began to make those squealy, whimpering noises he makes when I know he's uncomfortable or scared about a situation.  She started to say to him, "come on, you're a big boy, don't be like that", but quickly realized he was not like other 10 year olds that she' probably treated before.  Her tone was stern, but quickly pulled back into a softer tone.  It was obvious he was overwhelmed.   He had this mask on blowing medication into his face and people there waiting around to take test after test.  She had all the commotion stop so she could explain to him what was going on.  She explained the blood work and how being calm and breathing normally would make it quick and painless.  He listened to her and when he was ready they took his blood.  She told him, "I am so proud of you!  You did so great!"  Next it was time for the IV.  She explained it all to him, let him touch everything before she did anything.  again he was calm and the IV was placed.  I told him he was a better patient than me!  She took the IV pouch and showed him how to start the drip and she let him do that too.  She gave him a scan gun and let him scan his wrist band and all the medications.  She told him he was her best patient that day.  I was so happy that she was able to keep him relaxed and calm.  As they finished up all of his tests, her shift was ending.  She came in to tell him she would be leaving and thanked him for being so great and how proud she was of him.  He was smiling and happy and told her to have a good night.  I'm so thankful for the care she gave 'Milo.  It certainly made things a lot less stressful, for both of us!  As we sat and waited for his test results he was wide awake, so he watched Minecraft videos to past the time.  Around 2:30 the doctor came in to check his breathing again and was pleased it was better.  He also told us that all of the tests came back normal and was ready to discharge.  We got back home at 3am.  He excitedly told Grammy how brave he was and what a big boy he was and proudly told her he didn't cry.  All because of one very special nurse :)