The Schedule

Our neighbors must wonder who is coming and going at our house M-Th afternoons.  Maybe you wonder what I do with 'all my time' every afternoon.  No I'm not sitting and eating bon-bons or watching soap operas.  haha!   We are pretty busy every M-Th.  This is Sam's home therapy schedule after he goes to school from 9-2 every day.

• M- 4-6 ABA therapy
• T- 3:30-6:30 ABA therapy
• W- 3:15-4 private speech
• 4:30-6:30 ABA therapy with 2 therapists overlapping
• Th- 2-3 every other week. School ABA home visit
• 4-6  ABA therapy
• Fr- NO visitors so don't come knocking because we won't answer!  :-)

We also have the home ABA Supervisor who comes out to the house once a week or every other week to oversee the programs.  Sam LOVES all his "girlfriends". 

Some may think that 5 hours of school every day PLUS home therapy is a lot but it's not really. I don't think there's such a thing as 'too much' therapy during these early ages. And he's not working hard all the time. He has LOTS of fun and learns so much every day! He loves it and is such a hard worker!  As for me, I'm very involved in his therapy.  I sit outside of the room of speech to listen. I could sit in the reception room but then wouldn't hear him and this is where I learn ALOT!!!   During home therapy I stay in the sessions too most of the time.  I could be doing laundry or scrapbooking but I like to see what he's doing and also learn from the therapists.  So we don't have much downtime here.  But this ok!  It's a good thing we have going on!  And I will take all the help we can get now because that can always change with insurance coverage.  The more "help" we get now the more likely services will be approved down the road or maybe he won't need them at all.   The long term goal is to have him in mainstream classes in school with little or no therapy but only time will tell what his needs will be.  The future for Sam is bright and very promising!   This we know for sure!

Word World

Sam's current favorite shows are Word World and Super Why! Goes well with his language EXPLOSION! I need to start jotting down new thing he says every day! Yesterday during home ABA therapy he left the living room where the 2 therapists were to come see me in the dining room. When he went back to see them he said 'I'm back'! We were laughing! He's now saying final consonants. Some examples of recent words are; pop, cat, book, up, stop, I get milk (used to call it 'ga'), puppy, cracker, cookie, 'scuse' me for excuse me when he burps, I toot or poop, downstairs, upstairs, horse, dog, duck, pull me, train, bus, spoon, fork, eat, cup, bed, go sleep, I cold or scared, sad, happy, mama's daycare, want, yeah, , here you go, yes...geesh I'm sure there are so many more! He can put words together like Dada go to store to get mama soup. But mostly uses 1-3 words together at a time plus still a lot of jargon. He LOVES doing anything with ABCs and words on the iPad, tv, books and puzzles and of course still loves his beloved trains! He loves school, private speech and his ome therapy. He has 10 hours of ABA therapy over M-Th (applied behavioral anaysis for autism) at home. He's doing so well with the home therapy that I wonder if the 10 hours is too much. The lead therapist has to keep updating his programs. They are going to help us with potty training which we tried last weekend and he clearly wasn't ready. He will be 4 on March 29th. Where does the time go?

Sam has the funniest sense of humor and the best timing for things. Trying to think of examples...He will call me Dada on purpose and I will call him Chloe (our cat). I will call him something like puppy or silly and he will say 'no I'm Sam'! Lol!

He can spell Samuel and count up to 30. He says the ABCs all the time and yesterday clearly said S and W (all 3 syllables). We are now teaching him his last name and age and then will move onto address and phone #.

He tells us when he's sad or scared. Yesterday when he came home from school I asked him what he did and he said 'E'. I opened his school bag and there was a letter puppet E! Monday he was home with Steve and I had to work. I came home and asked him what they did. He said 'go to store' (just 1 thing they did). I can't believe he is starting to tell me things that he does when I'm not with him! A few days ago he asked for crackers but we didnt have any of his left. He said 'I go to store to get crackers'. So smart!

He will tell us if he's cold but will not wear socks once he's shoes are off. He will not use any blankets or pillows in his bed but will use them in ours. He actually slept 2x in our bed this past week when he woke up sick during the night. I still can't believe he kept still! He would never stay still and lay down to cuddle with us a few months ago! And now he gives kisses all the time! Love it! Teaching I'm how to say love! So far we get 'uv'. I will take whatever we get!

Open up and say Ahhhh!

Or WAHHHHH in our case at monthly acclimation dental visits for Sam. We go to Pediatric Dental Center of Mansfield and LOVE them! The problem is when you have a child who HATES going to doctor apps and cannot sit still for long! He gags when brushing his teeth and we worry that he may have cavities from years of acids reflux + all the vomiting and formula he still drinks! Well this visit went better but we still have a long way to go. He did well for the hygienist and after mommy pretended to demonstrate everything first; brush teeth, count teeth and look at teeth with their 'mirror tool'. He finally let the hygienist do the same. Dr. Bob came in and had Sam look in his mouth too. Lol! See pics below. Sam wasn't happy to do the same requests again for Dr. Bob and let out some BIG screams! Sigh! he said he has NO major decay on his teeth, just some staining. (One day he'll get a good cleaning). We were finally done and Sam got a new train which I had promised him (was leftover from Hannukah as he got too many). We'll be back on 2/7.

Happy New Year!  It's 2012!!!

Reflecting over the past year.... the last 4 months have been GREAT!! Sam is now talking, expressing his needs and wants. He's gone from a child who would get very upset with ANY transition, meeting new people, being left with a sitter, 45+ mins of big meltdowns to just going with the flow..He's now more independent, says yes and ok to transitions, LOVES meeting new people and rarely has meltdo...wns longer than a few mins! He's able to go to new places, loves his sitter, his teachers, his therapists and interacts with kids of all ages just like a "typical" child!! 1 year ago his future was very uncertain..today we KNOW that he's capable of ANYTHING and will most likely have the autism spectrum diagnosis lifted in the years to come!!  AND I'm so HAPPY to have found a job that gives me a nice paycheck, insurance PLUS the schedule to be here for Sam after school. Steve has a GREAT job and we are setting goals for US in the new year. Looking forward to more GOOD changes and planning our next steps for the future!!! Here's to 2012!!!

12/31/11

Had a great night with friends and all the kiddos! Sam did awesome with lots of noise!!! Happy New Years!!

12/30/11

Well there's no doubt that Sam can say the letter B nice and clearly and use it in words like 'Mama's boobies'! YUP!!! The latest from silly boy! Lol!

12/28/11

Sam did awesome again today at daycare dropoff!!! he was hugging me, walked me to the door and closed it and was standing at the window waving to me! so cute! He even said hi to one of the older kids! That is HUGE for him to interact with kids of all ages! I was kind of torn up with joy coming to my desk after that! AMAZING how much 1 year changes everything!!!

12/27/11

So proud of my big boy going back to 'mommy's daycare' today! Not 1 tear was shed, he ate all his food and had a great time!

12/26/11

Thank you to the iPad and PBS app that I just downloaded for free- I was able to trim Sam's bangs while he watched Super Why- with no crying, screaming or squirming! Super Why came to my rescue!!! yay! :-)

Dear Shopper Staring at My Child Having a Meltdown in the Grocery Store

Just had to copy and share this...I'm sure every mom or dad can relate to this story but more so parents of special needs children because the OFF button is so much harder to turn OFF!!!
  
Oh I could have used this today at Rite Aid when Sam had a huge meltdown...'I go home..no I get pops...I go home....screaming in between! One of the pharmacy techs came to tell him it was ok and he said 'go go go' as he put his hand on her to push away
--------------


Dear Shopper,


Yes, I know.  I’m well aware that my child is screaming.  Not just a regular scream, but an ear-piercing, sanity-shattering screech.  Even if I wasn’t seeing and hearing it, I would know by the expression on your face.

Clearly, you have raised your children better than me.
That is what you were wanting to say, right?   There certainly can’t be any other purpose to you stopping in your tracks to stare or elbow your companion  or better yet — give knowing looks to other shoppers passing by.

I have no doubt that you have wonderful, well-behaved children.  Grown, tax-paying, law-abiding citizens who would never have dreamed of screaming like this in public when they were children.  Judging by your expression and utter exasperation, you’ve never hesitated to let them know who was boss.
And I know that you did your best with your children, that you loved them, and want all children to have a solid upbringing in which to start their lives.  You are, in all probability, a good person.  You probably don’t mean any harm.

This is what complicates what I want to say to you.  Because, despite my anger towards you, I happen to have been raised well too.  I don’t want to be ugly, even though right now I feel like it.
Because I know some of that anger is misdirected.  It is misdirected because I, too, have stood in judgment of someone like me.  I, along with almost everyone, have stood in public and watched a scene like this one play out and thought to myself, “Clearly she has no control over her children.  When I have children, mine will never behave like that.”   I, like most people, wasn’t quite as obvious about it as you.  I didn’t stare or make comments that could be heard.  But I was every bit as decided.   So, some of my anger is really directed toward Human Nature, who refuses to be put in its place.

The nice thing about human nature, however, is that it can be overridden.  And all it takes is but a single experience, a single human interaction, to the contrary of your own strongly held convictions.  Then presto whammo — you are a new and hopefully improved person.

Let me introduce you to my child.  Like you, I marveled at the miracle of life upon becoming his mother.  Like you, I rocked, burped, and inhaled his sweet baby scent and thanked God over and over for the gift of him.   Like you, I had certain dreams for my child.  There your path and my path diverged somewhat.
My precious child is autistic.  Yes, I’ve seen Rain Man, and, no, my son is not likely going to be a great card counter.  The truth about autism is that it encompasses a wide spectrum of abilities.  And, like you and me, every autistic child who has it is different from the next.  Yet they do often share some similar traits – sensory overload and meltdowns are one of them.

Every person on the planet has what I think of as an internal alarm system.  Most of us have ours in good working order.  But some people with autism have what I like to call a hair-trigger alarm system.  Theirs can go off with what seems to average folks like little to no provocation.  There IS always provocation.  Non-autistic people simply aren’t as sensitive to seeing and hearing the triggers, and that’s when the alarm goes off.  And when it does, it’s loud.   Everyone in the vicinity wants nothing more than to have it turned off, including the people who love them.  When you see me “placating” my child and “giving in” to his tantrum, I’m really just desperately looking around for the alarm key or trying to remember the right code to turn off that blaring alarm.  It isn’t his fault.  And, no matter how upsetting it is for you, let me assure you it is that much more upsetting for him.

I’m sorry that you haven’t had quite as pleasant of a shopping trip as you had anticipated.  It hasn’t been so pleasant for me either.  Problem is — I have to feed my family, deposit my paycheck, pick up prescriptions, etc. just like you do.  And, unfortunately, no one arrived at my house today to watch my child so that his autistic behavior wouldn’t upset anyone in public.  I have to leave the house and so does my child.  Because I have to teach him about the world.  I have to let him practice controlling his alarm system.   So that he, too, can possibly be a productive citizen making come true all those dreams I had for him when he was so small.
With so many advances in early detection and therapy, many of us will be able to see most of those dreams come true for our unique children.  And for some of us, our dreams will have to change for our children.  We may need to re-define happiness and success.  For life is like that.  We constantly have to reevaluate our expectations of ourselves, others –and, sometimes, even the grocery store.

I’m hoping that your single human interaction with me has given you an opportunity to be a better person.  For, with 1 in 91 children being diagnosed with autism now, you are going to have a lot more opportunities to make a positive impact in the life of someone like me.  All it would take would be a smile, a pat on the back, or a “Bless your heart, honey, hang in there” to refill a stressed out parent’s reserve of patience and calm.  You could be the bright spot in our day.  And, then, if you want, you are welcome to ask all the questions you want.  Your curiosity doesn’t offend me in the least.  Most of us aren’t the least bit upset to talk about our kids – any more than you are.  If anything, it is an opportunity to educate and dispel myths.
And, maybe, just maybe, you will be standing there when the alarm gets turned off.  Maybe you will get to see what every mother wants the world to see – the wonderful personality of her child, in our case hidden behind a mask of fear, anger and frustration.

Who knows?  Maybe I’ll get to see the one hidden behind yours.   Found this story on a very helpful blog at:  
http://flappinessis.com/

We have an iPad!

Sam was gifted an ipad today from Gary James of www.a4cwsn.com.  We were the recipients of the 50 states, 50 ipads to 50 children campaign!!!   Gary James came to our house early in the morning to hand deliver the ipad.  We also had the RI recipients join us to help save Gary some traveling time.  It was nice to also meet Rebekah, Joshuah, Laura and Karl Tirrell!

I spend ALOT of time on the A4 facebook page, probably too much time but there are so many great resources there for apps, education, therapy and most importantly MANY other moms of kids just like Sam.  It's a family, a community, a place to go where people GET it!!!!   Thank you to Gary James for taking his vision that every special needs kid should have the resources to help them therapeutically, in school, at home and yes, to get an ipad.   You can check out the group at http://www.facebook.com/a4cwsn.  Just don't be scared if you go there one day and see either funny stories about chocolate milk, Gary's pet sticks or some crazy drama going on!  It's all good- just come back another day to join in on the fun!!!  

Lastly I have to say that Gary is an amazing man with a heart of gold!  WHO do you know that drives 20,000 miles across the US to hand deliver ipads?   He spent weeks away from his wife and 4 young kids (2 of who are also special needs).  Gary has given us and many other families the gift of an everlasting friendship and a voice for our child with the help of the ipad.    Thankfully at the same time Sam has also BLOSSOMED with language!   We are truly blessed!!!

Slacking with food trials

Sam's last scope in March was clear which means he had no eosinophils in his esophagus from the last bunch of foods we had trialed;  turkey, rice flour and rice chips and strawberries.  Met with his GI doc, allergist and Nutritionist on 3/28.  Was probably the shortest appt. and we all agreed to trial corn, beans, 1 more fruit and beef next.

Well it's the beginning of May and we haven't done much. He ate some beans with white rice one night but then vomited, maybe texture of the rice?    Then he vomited 4 times during 1 week and we weren't sure what was going on.   Maybe seaonsal allergies or a virus?  It's always a guessing game.  I want to make some corn bread, muffins and pancakes over this next week unless we try hamburger with him.  Will see. The last few days he's been very hungry and wanting more formula.  He's had 4-8 ozs. more a day and has wanted more food too.  Maybe a growth spurt or he needs more food.  I know I shouldn't worry but I do worry a little bit when he drinks more formula consistently.  I'd rather him eat more food and a variety so I really need to work on that.

School-   Sam started full day preschool on March 30th.  He loves "stool" as he says!   He's also just started saying "more" besides just signing it.  It's so cute the way he says it!   I have to keep reminding him though every time he signs it to say "more".   He's learned so much from school already. He comes home and takes off his jacket and wants to hang it up like they do at school.  He sits down and tries to take his shoes off and will put them back on but on the wrong feet.  He is using a fork now most of the time.  I was working on that with him but he just started doing it at home this week.  Every day when we get home from school I go over the paper that is sent home with him to see what he did at school.  Obviously he can't tell me what he did so I love that they have this detailed sheet where they circle things or write in what they do.   I ask him questions about his day and he will either shake his head and smiles yes or say "noooo" even though I know he did that certain thing.   I think he's being silly sometimes with all the "no's" but other times I'm not so sure.   Anyways he goes to school M-F from 9-2 and gets all of his therapy services during those times.  I'm thinking he may need additional speech and ABA therapy outside of school.  We will be meeting with the ABA therapist again on 5/19 to go over how he is doing in school and what else he needs at home or in the community.   We've had some tough days this past week.  He's been communicating more with words and showing us what he wants but at the same time his "episodes" as I call them have gotten worse again with getting very upset and for a good 45 mins.  Again these aren't your regular 3 year old tantrums.  Don't even feel like getting into them right now but it's not fun.   I'm tired and warn out every night and that's still with him going to school for the 5 hours a day.   One day we'll get a nice vacation or a day off but for now I'm happy to still be home and here for him when he needs me!

We've been putting a lot of work into his EOS fundraiser on 5/19. It should be a great turnout and I can't wait!!

Thanks for reading and trying to keep up!