His Autistic Life

Stand out or fit in??

2015-10-14T22:33:00.004-07:00

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

2015-09-20T21:15:00.003-07:00

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

2015-09-18T19:24:00.001-07:00

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!

2015-09-17T22:19:00.001-07:00

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

2015-09-17T22:15:00.001-07:00

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

2015-09-17T21:45:00.001-07:00

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

2015-09-17T21:17:00.000-07:00

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

2015-09-17T21:06:00.001-07:00

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

2015-09-17T20:58:00.000-07:00

\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

2015-04-14T18:27:00.000-07:00

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

2015-04-13T22:03:00.003-07:00

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

2015-04-13T18:46:00.001-07:00

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

2015-04-13T18:24:00.001-07:00

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."

A Note of Thanks

2015-02-05T23:01:00.000-08:00

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 :)

Halloween fun!

2014-11-01T10:53:00.004-07:00

Another Halloween has come to an end. The boys get more excited every new year and thankfully 'Milo can handle it. He's always done well and we've always taken him trick-or-treating. Some of the costume are a little scary for him, but he's he does OK. I see him get a little frighten, but a little excited at the same time. It's a good 'ol healthy dose without being overwhelming. But last night, for the first time, I could see the excitement wear off his face. He started to be come quiet, looking around in the darkness. Staring at people. Even the unicorn mask I wore lost it's luster to him, even though he had bee so amused by it when we left the house. When we started off, it was still a bit light, but the overcast sky brought the night on much quicker. And the area we walk literally had no street lights. It was quite a busy and long day. Both kids were pretty tired by 7:15, but 'Milo's eyes were big and on the verge of teary. I said "are you all done son?" He said "yes" in a very tiny voice. "OK, let go" I said, and home we went.

When we got to the house and it was time to go with dad, 'Milo said, "I'm gonna miss you". I said "dad is going to protect you and keep you safe just like I would". I think he was stressed so I'm glad we stopped when we did. I gave him a hug and a kiss and reminded me I would see him at his soccer game the next day. I'm glad he can enjoy the holiday like other kids...at least for a while :)

Wins! I'll take 'em where I can :)

2014-10-29T21:23:00.002-07:00

Busy schedule lately that I haven't had too much time to post. Halloween is on the rise so excitement is in the air :) Plus both boys are playing soccer again this season (both teams are undefeated so far :) yay) so we're usually out on the field 5-6 days a week. Makes for one tired mama! Once the kids go to bed, that's usually my time to do my research, catch up on some of my fav TV shows, prepare for the next day and just plain relax. But even in those last few hours of the day, I'm having a hard time staying up just from being exhausted! My mom had some surgery too recently so our household is a bit topsy-turvy lately.
But I do have an update on 'Milo! We had an IEP meeting on Friday. Not a full meeting, but just an meeting to say they were going to exit 'Milo from Speech and OT. This is something that was brought up in his last IEP, by me and 'Milo's dad. We agreed that we felt it was time. He has made a lot of progress over the last couple of years in both area. Personally I feel the sports helped a lot. So they school said they would do an assessment to be sure this was the right decision. They said he passed with flying colors in both area and felt that he did indeed had made progress. I'm glad that he will now have more academic time; after all Jr High is right around the corner! Trying to get him up to speed on his multiplication table has been tough, but he's got most of them down! I will randomly ask him throughout the day and he'll get them right 99% of the time. And spelling words... well, now that I've found a method that works for him, he no longer come home with a spelling test where he got them all wrong! He gets 100%s now, or at the most only 4 wrong. This was a huge struggle, but as I've said before, find what works and go with it! So lots of fun stuff going on and we'll continue to strive for more wins in our world with Autism.

Best quote of the day: "I want to touch everything!"

2014-08-24T16:20:00.002-07:00

Most little boys love trains. But there are many kids on the spectrum that have a similar fondness for them. For my son, he use to love to watch the wheels turn. Thomas was always the favorite. We even had his first birthday party at Travel Town; a train museum in Los Angeles. Was the really 10 years ago!!?? <sniff, tear> We went to visit Travel Town today and it is just as popular with kids as ever. My kids always loved this place and that was no different today. They were so excited that I even let them ride the train around the park all by themselves for the first time. And they got seats right in front.
'Milo had always been so sensitive about his hands. He didn't like them dirty or sticky, but more so than just typical kids. He reacted like it was burning his skin. But over the years, with OT and therapy that he has had since the wee age of 2, it has really helped to relieve the anxiety he had about it. So today when he exclaimed, "I want to touch everything!" I had a moment where I stopped and thought, "oh that's right! he never did that before". Watching him opening flaps and moving levers and not worried about the dirt on his hand and not SMELLING his hands after touching something!! I mean wow, really. Even as I write this I realize, he didn't smell his hands once! This is really only in the last month and a half of ABA and he's already stopped smelling things.

One might say, what's the big deal about smelling things. Well, let me ask you this; as an adult, if another adult shook your hand and smelled their hand after, what would you think? It's just not a socially acceptable behavior. This is a life skill that most people don't have to be taught. It's little things like this that people don't realize. There is constant teaching when you have a child with Autism. Today made me realize all the blood, sweat, are tears you put into helping your child it so worth it when you see what's been accomplished. I appreciate all he has become so much.

Yesterday started off with a bang...

2014-08-22T07:01:00.002-07:00

I was not good as you can see from the post I wrote on our FB page:

"Today I hate autism. I hate the challenging behaviors it gives my son. It's not his fault, it's the autism. I hate that I have those moments where I just need to close the door and scream! It's not my fault, it's the autism. I hate that it can ruin a moment in time for my family. It's not our fault, it's the autism. I hate that people who have not experienced autism first hand can be quick to judge. It's not their fault, it's the autism. I hate that at times I feel like I'm the only one that gets me, when there are thousands of autism parents having that same feeling. It's not our fault, it's the autism.
There are times that I love what autism has taught me. I love that other autism parents support each other. I love when I can share a suggestion that works for another parent and they are so appreciative. I love that ah-ha! moment when I figure out that one thing that helps my son "get it".
But today, I hate autism"

Autism and my Nuro-typical child

2014-07-05T20:02:00.000-07:00

I have a son who is going to be 8 soon. He has a brother who is Autistic. He can be is brothers best role model and worst critic. He is impatient at times, and that's understandable, but no one can deny how much he loves his big brother. We started ABA a few weeks ago and have been having some good session. But on July 3, things got rough as I described in my posts on our FB and G+ pages. In the hour and a half that my older son was having his meltdown, D was in his room playing with the iPad and waiting for the calm. He has seen these episodes in the past and has been in tears over it. I feel bad for him when this happens. Not only because he's obviously overcome with emotion but because at these times, I have all my focus on my older son. But that is the least of his worries from what I can tell. Aside from the gut wrenching screams that are definitely unnerving, he will say to me he was upset by what 'Milo saying (usually calling me names), or that he was hitting me or hurting himself (banging his head on walls or scratching his face) Or he was upset that 'Milo was throwing things or knocking over furniture. I'll admit, the older he gets, the stronger he is... and well, the older I get, not as strong as I used to be I guess, but at least for now, I can still overpower him so there isn't too much damage. But Thursday it was evident that 'Milo had actually physically left me with some marks. Honestly I've grown a thick skin to this. I take none of it personally. In fact, when every last bit of his outburst is over with, he'll sit quietly for a bit an out of nowhere he back to just being 'Milo. He will tell me sorry for "being crazy" and give me hugs a kisses, the go on as if nothing had happened. It's like someone flipped a switch.

When my younger son saw this he said, "Did 'Milo do that to you!?" I said, "yeah, but I'm OK". He didn't respond. The next day he saw my arms again and said "I don't like seeing these marks on you...when are they going away?" I said, "hopefully soon". Then today, 'Milo went over to grammy's for the night...honestly, I think she just likes to give me a "break" now and the, bit also to give me and D some one-on-one time. Seriously, he deserves it. I asked him what wanted for dinner and he said pizza. I said "oh, you want to go to Pieology?", he said "no, just here". So we went to the store, got a pizza, brought it home and sat and ate. As we bit into our first slice, he put his hand out for mine, and held my hand...as we sat and had pizza... just the two of us :)

We need to talk about it!

2014-06-26T22:07:00.000-07:00

I know, I know... who wants to talk abou this, right?? But don't we spend so much time already trying to give our special needs kids the best possible quality of life right now. But what happens when we're gone. What happens if your child is an only child. What happens if you have other children who are Nuro-typical and go off to collage, get married and have a family of their own? What if we live a long life, but are not capable of caring for our special needs child when they grow into adulthood? Planning for a special needs child with benefits such as life insurance 401K, saving accounts, are critical in helping families pay the huge expense of caring for and educating their children with special needs. However, a child with special needs cannot have more than $2,000 in their names; if they do, the government could freeze benefits such as Medicaid, Medicare, Supplemental Security Income, or Social Security Disability Income – money some families need to care for their child.

Here are a few things that I found on the Mass Mutual site that parents/caregivers should remember.

If you have life insurance, make sure the policy does not benefit the special needs child directly; proceeds that are generally tax free should be paid into the child’s trust
Do not give or accept financial gifts or assistance in the name of a child with special needs. If you do, deposit gifts into a special needs trust that benefits the child. these gifts can legally be given to the trust of a child with special needs and will not jeopardize government benefits if the trust is properly drafted to comply with your particular state’s requirements.
Be aware: there is no difference between gifts of cash, bonds, stock, property, inheritance, annuities, art and automobiles; they all count against the child’s net worth

Another really good tip my cousin pointed out to me is a conservatorship. When a child reaches the age of maturity 18 in most cases, but 19 or even 21 in some states and is not ready to make adult decisions, he or she is nevertheless considered an adult under the law. A parent may find, that they are no longer allowed to handle their child’s money, gain access to their child’s health records, or make important medical decisions. It may be appropriate in these cases to consider a conservatorship.

All of this should be discussed with a attorney or financial planner to ensure the trust works best for the needs of the family and child.

Check out this clip from Autism-Live from their show on May 8 where they talk about Special Need Trusts.

Sources:

Mass Mutal

The information provided is from my own research and is not specific for every family situation. Please be sure to check with a Special Needs Trust Attorney or Financial Adviser to find a plan for your specific needs.

2014-06-21T22:19:00.001-07:00

I came across this on my computer and I thought I'd share because this melted my heart then and still does. I have this posted at my desk at work and I see it everyday.
Before I had my boys, about 12 years ago or so, I was diagnosed with Lymphoma and treated with chemo for 7 months. Every year the Leukemia/Lymphoma society holds a fundraiser called Light the Night. This is a cause that has been close to my heart since being treated and recovered. I have taken the boys almost every year since they were little. Everyone is given balloons; red for caregivers/supports, white for survivors, and gold in memory of someone who passed. These balloons light the night. It is a beautiful event.
In Nov 2012, when 'Milo was in 3rd grade, we went to this event like we had in the past. At the time 'Milo's teacher had a daily assignment in the class where they would write in a daily journal. These writings were sent home every couple of weeks...and that's when I saw it. This beautifully drawn, beautifully written recollection of the Light the Night event we had attended. I was so moved because before then I never really knew how much he realized what is going on around him or if it impacts him enough to remember something, beside cartoons or a video game.
But this time I knew.

Eye Contact

2014-06-09T14:39:00.000-07:00

Check out this video regarding eye contact and why it's so important. Those of us not on the spectrum do this all the time and may not even realize it. This is one thing the ABA therapists are working on with 'Milo.

If you have a chance, check out Autism-Live on YouTube. You can also check out their website autism-live.com! It is a great source of info and resources.

A change is coming...it's a good thing, really!

2014-04-11T21:37:00.000-07:00

'Milo has received services since just over 2 years of age; Occupational Therapy (OT), Speech, and Early Intervention. Since starting PreSchool at age 3, he has been provided OT, Speech and Adaptive PE (APE - for gross motor skills) thru LAUSD. All, thankfully, free of cost. Each year at the IEP meetings, his services have always been reviewed an renewed. Today, sitting in the office waiting for the meeting to start with 'Milo's dad, I said to him, do you think 'Milo even needs to continued speech therapy anymore? After talking it over, it was clear to see that he has come a long way, even in the past few years, that we agreed to bring this up at the meeting. Then I said, what about APE? He's been playing soccer and he seems to be much better with the skills as well. And again after discussing, we agreed to also bring this up in the meeting.
So here we are, 'Milo's teacher, his speech teacher, the vice principle, 'Milo's dad and me. We went over the his English, math, writing and so on. Talked about the goals he met (most of which he did!) and some that needed to be adjusted to be more attainable. So when speech came up and the teacher talked about how he's met these goals and how much better he was even since the beginning of this school year and new goal we listened. It was then I said, "we were just talking about this before the meeting started and we're thinking, does he really need to continue with speech? He's come so far in just the last few years; he's aware when he mis-uses a word, and will even correct himself and if clear about that he saying. We feel that he should spend more time on his academics. What are your thoughts?" His teach nearly jumped out of his seat! He said, with a huge smile on his face, "I think this is the first time a parent has asked to remove a service! We have to mark this day down! You guys get it!" He said that parent see progress and they ask for more time on services, but we were asking for just the opposite! This is 1 hour a week, that he is away from class and it just didn't make sense anymore to use that time on a service. He even said, "you should write a book!" I think that was the biggest compliment When the APE services and goals came up, we said the same thing, let's use this time on academics now. I said "he plays soccer now and even wants to try basketball. We think he's ready to transition out of that service as well". They asked how he was doing with soccer, I said he did great, he was even goalie and played defense, blocking shots running up and down the field. They were all supportive of that as well. So now the next step, which is required, is the put in the request for an evaluation in these two areas just to record his progress and make sure these services are no longer needed. I'm sure they will be removed and so next year, he will be able to spend more time in the class on academics. More than likely, the assessment won't be completed until the next school year, but we were able to request that speech be reduced by a half hour a week in the mean time starting the next school year.
All in all it was a great meeting and very happy with the out come. We should start to see some more progress in his academic goals with that extra time in the class. Onward and Upward

IEP: individualized education program - Kids with delayed skills or other disabilities might be eligible for special services that provide individualized education programs in public schools, free of charge to families. Parents work with educators to develop a plan to help kids succeed in school. The IEP describes the goals the team sets for a child during the school year, as well as any special support needed to help achieve them. - Source, http://kidshealth.org/

OT: Occupational Therapy - helps kids who have a physical, sensory, or cognitive disability carry out everyday activities like brushing their teeth or putting on shoes and socks. - Source, http://kidshealth.org/

APE: Adaptive PE - Adapted Physical Education is physical education which has been adapted or modified, so that it is as appropriate for the person with a disability as it is for a person without a disability. Assists in fundamental motor skills and patterns (throwing, catching, walking, running, etc) - Source, http://www.apens.org/

Speech Therapy - With a variety of techniques, speech-language therapy addresses a range of challenges often faced by persons with autism. For instance, some individuals on the autism spectrum do not speak, while others love to talk but have difficulty using conversational speech and/or understanding the nuances of language and nonverbal cues when talking with others. - Source http://www.autismspeaks.org/

Early Intervention - Early attention to improving the core behavioral symptoms of autism will give your child – and the rest of the family – several important benefits that you will not gain if you take a wait-and-see approach until your child enters school at age four or five. A good early intervention program has at least four benefits: It will provide your child with instruction that will build on his or her strengths to teach new skills, improve behaviors, and remediate areas of weakness. - Source http://www.autismspeaks.org/

Diet & Encouraging Picking-Eaters

2014-04-09T21:37:00.002-07:00

None of us have this problem, right?? I can tell you, in my personal experience, my son adjusted to food well after being breastfed. He tried just about anything; fruits, veggies, meats, dairy, the works. As he got older he stopped eating foods he use to eat. Now at age 9, he has gotten very picky and specific about food. He does not like fruit. In fact, just until a few years ago, he would eat bananas and applesauce, but he refuses those now. He's actually better at veggies and will eat broccoli, carrots, peas, onion (mixed in foods), string beans and corn. And forget about breads. Will not touch or eat and if someone is eating bread near him he has a disgusted look on his face! So I was excited for this topic. Here is some information I obtained at a recent support group meeting at CARD. I feel a disclaiming coming on....

This site does not provide medical advice. The content of the information obtained from CARD and shared here is intended for informational purposes only. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding you or your child with Autism. Never disregard professional medical advice or delay seeking it because of something you've read here.

Common Nutrition & Feeding Concerns:

“picky” eating behaviors
Difficulty with transitioning to age appropriate diet
Increased Sensory Sensitivity
Short attention span
Limited variety in diet
Need for routine

Common eating preference:

Preference to dry, crunchy food
Refusal of soft, smooth textures
A dislike for fruits and vegetables
Preference to finger foods
Preference to certain brands and preparation methods
Preference for food of particular color(s)
-some common foods that are preferred:
Dry cereal, crackers, chicken nuggets, pizza slices, hot dogs and pasta

Impact on growth and development?

The majority of children with ASD are of average height and weight, according to the Center for Disease and Control (2012)

www.cdc.gov/ncbddd/autism/index.html

Other nutrition concerns that are associated with diet:

-vitamin and mineral deficiencies

-gastrointestinal concerns (reflux, constipation, diarrhea)

-food allergies

-drug nutrient interations

Drug Nutrient Interactions

Medication may increase of decrease appetite and may affect vitamin and mineral absorption.

Examples for interactions:

-Ritalin decreases appetite and stunts growth

-Risperdal or SSRI, may increase appetite

-Seizure medications affect calcium, vitamin D and folate metabolism and may need to be supplemented

What we know about Autism & diet implications

Studies have shown a difference in nutrient intake with typically developing children (CDC, 2012).

Additional studies have shown children diagnosed with ASD eat less than the recommended amounts of: vitamin C, D, several B vitamins, iron, and calcium

Gluten-Free, Casein-Free diet

-Leaky gut hypothesis; the gut allow peptide metabolites of Casein & Gluten to cross into the blood stream and then into spinal fluid.

-These peptides act as opiates in the brain and interfere with CNS Function.

The central nervous system (CNS) is the processing center for the nervous system. The two main organs of the CNS are the brain and spinal cord. The nervous system consists of the brain, spinal cord and a complex network of neurons.

Some argument have been made that Autism may be influenced by Gluten and Casein diets

GCFC Diet: Studies and Implications

-A meta-analysis in 2008 showed no-evidence for efficacy of a GFCF diet.

-2010 study of 15 children with Autism (ages 2-16 years of age), showed no significant results.

--However, Parents and Caregivers reported improvement in Autism related symptoms

--Indicate there is more of a need for investigation and analysis within clinical trials

GFCF diet impact on families

-Extra time needed to buy and prepare foods/meals

-Diet makes child “special” or “different”

-Diet makes peer/social interactions difficult by the introduction of this barrier

-High cost of alternative foods

GFCF Diet: Nutrition Implications

Children on the GFCF diet ten to eat more fruit & vegetables, and less bread and cereals.

Common risks of nutrient deficiencies:

Gluten Free diet: Iron, Zinc, B-vitamins and Folate

Dairy Free diet: Calcium, vitamin D, Vitamin B2, and Protein

GFCF diet: What to do?

Weight the Pros and Cons and decide if the diet may be an “option” for your child.

Start slowly. Start with a CF of GF diet first. Then make a few changes at a time, and observe your child

Supplement Calcium and Vitamin D

Give a Children’s Multivitamin with Minerals

Most importantly, talk to your pediatrician or consult with a registered dietician.

www.glutino.com/

www.gfco.org

www.gluten.net

www.livingwithout.com

www.allergygrocer.com

www.foodallergynetwork.com

Encouragement: picker eaters

Helpful guidelines

-Important to rule out any medical drivers of food allergies that could be causing a dislike of particular flavors or food groups. (Consult with pediatrician/dietician)

-Its perfectly natural for a child to be averse to eating a food that caused a bad tummy ache or a bout of food poisoning in the past. Basic instinct!

-Avoid making food a source of conflict with your family! Arguing over a food item will not make any situation better—tends to make things worse.

7 Stops to trying new foods:

Simply look at new foods items together
Suggest to smell it and/or touch the food item together
When you feel your child is ready, suggest licking or tasting the food item
Sometimes it can help to mix the new food item with a familiar and preferred food for the first taste. (This gradual approach can decrease anxiety about new foods by increasing familiarity.
Try and give your child choices so they can feel in control of their meals (provide 3 choices: Peas, carrots or salad -or- Providing a wide array of foods items, like a buffet.
Make you child’s favorite meal, but add a “mystery ingredient” and make a game out of it
Include your child in the cooking process, and have him/her choose certain food items (encouraging choice and control can help avoid argument/meltdowns and encourages a more varied diet)
It’s important to find solution with you child. The more fun, the better. Make faces on pizza with different vegetables and pepperoni. Paint with pasta sauce. Experiment with how food changes color or consistency when mixed together or cooked. Each of these activities will help a child become more comfortable around new and different foods, create opportunities for trying new tastes and keep food discussion positive. Make mealtime an opportunity for flexibility, education, choices, and most of all, fun and children will respond favorably, whatever their age.

source: CARD

Social Cognition and Theory of Mind

2014-03-05T18:15:00.001-08:00

Recently at an Autism Parent Support group, the discussion was about Social Cognition and Theory of Mind. How many of us have experienced our Autism child lack the basic social skill in some degree? I'm sure at one time or another this has happened. Example, one story that was discussed was a child who was home with another family member. The family member was in a different room and had fallen. The child heard the commotion and ran to see what had happened. The relative said, "go get your mom, I need some help", the child replied "I'm busy" and walked away. In my own experience, my son has told other children who were being noisy in a store or other public area to quiet down, in a very assertive tone. We've gotten some strange looks from parents when he does this... heck I would probably do the same thing. So I've told him that is not his job and not to do that. Or in other cases, kids will talk to my son but because he's very fidgety and hyper, they give him an odd look.

Here are some of the highlights that the group host provided to us:

Social Cognitive Impairments in Autism

Inability to infer or empathize others' desires & feelings
Inability to consider what others know
Inability to consider what others are thinking
Inability to infer others' beliefs and opinions
Inability to consider unintentional behaviors of others
Inability to infer communicative intent
Inability to understand or engage in deception
Inability to coordinate multiple social cues in a given social scenario

So the question is, can a "Theory of Mind" be taught? Here are some examples that were provided on how this can be address:

Train for generalization in a one-on-one setting
Teaching "rules"
Role Play / Rehearsal
Reinforcement / Natural Contingencies
Generalization to peer iterations

"What is “Generalization?” It’s a “spreading” or “expansion” of teaching, beyond what was directly or intentionally done. Example: explicitly teach turn-taking to a child at school and then the child starts taking turns at home with siblings or friends, even though no one ever tried to teach turn taking at home" source

Teaching desires

Child's desires

-Child identifies what he/she wants

Others' desires

-Caregiver express/demonstrates desire. Child identifies/responds to others' desire

-Target finding out others' desires. Asking "which one do you want?"

Increase Social-Cognitive Repertoire

-Begin with obvious reactions, then reduce

-Generalize to natural social situations

-Have the child offer snacks to peers

-Have the child pass out pieces during a game

-Have the child find out what peers want to play

Teaching Knowing

Child's perspective

-Target identification of what and how child knows: "I don't know what the color your socks are because I can't see them"

Others' perspective

-Target identification of what others know and how: "You don't know what I had for breakfast because I didn't tell you"

-Target generalization to social interactions

Increase Social-Cognitive Repertoire

-Utilize visual prompts to increase comprehension

-Generalize social situations

-Rehearse and reinforce:

-Inhibiting telling what others already know

-Inhibiting asking questions and know answers

-Providing enought background information for the listener to understand

-Applying concepts of know to Social Play: Secret/Strategy Games, Hide-n-Seek

Teaching Beliefs and False-Beliefs

Child's own beliefs and false-beliefs

-Child identifies earlier false-belief: "I thought it was in the garage"

Others' perspectives

-Observes others' experiences and infers others' beliefs: "She thinks I'm doing my homework."

-Target predictions of others' emotions/behaviors: "He'll go to the park because he thinks his friend is there"

Increase Social-Cognitive Repertoire

-Do Not teach rote responding via mass trialing of scenarios

-Utilize natural situations

-Use visual prompting to help child recall earlier beliefs. Demonstrate what others think

-Inferring beliefs must be generalized to variety of stimuli and social situations

-Characters in stories

-Characters in videos

-Creating false beliefs in others: "tricks" and jokes

Advance Beliefs: Intentions

-Target a variety of Intentional / Unintentional behaviors

-Accidents vs. "On purpose"

-Mistakes

-Playful joking / Mean joking / teasing

-Lying of inferring intention

-Target a variety of means

-Facial expressions

-Body language

-Vocal qualities

-Previous experience

"Social interaction is not a static or segmented process. Social interaction is a subtle, reciprocal dance where friends continually assess how one’s own behavior is being perceived by others and adjusting accordingly. There are countless “unwritten” rules, rapid perspective taking requirements, and a demand to continually “socially filter” how you communicate to various listeners. Learners on the autism spectrum often lack this intuitive social thinking process of aiming to please and attend to other people in their interactions. Rather, conversations and relationships can appear one-sided or superficial in nature. Children with ASD miss the subtle nuances of non-verbal communication. They are unaware of unwritten social rules. Lastly, children with ASD can be hyper-focused on their own intense interests and have difficulty dampening or managing their own emotions when facing the unpredictability of the social world. It is for these reasons that an approach to increasing social competence should incorporate all aspects of Pragmatics: perspective taking, emotion/non-verbal communication awareness and expression, conversation skills with a social cognitive slant on analyzing skills, as well as teaching behavioral friendship skills." source