Thursday, September 11, 2014

The kindness of strangers

Say what you want about Facebook and other social media, but for as much drama as they can cause, they can also bring a lot of good. I have had some first hand experience with this in the past 24 hours. All because of this little cup

Like many children with autism, J has his little "quirks" and there are certain things that have to be a certain way. He is definitely a creature of habit. One example of this is the cup in the picture above. Since we transitioned J off of his bottle just after he turned a year old, this is the ONLY cup he has ever drank milk from.  He is perfectly capable of drinking from an open cup and will do so with juice when he is at school. But NOT his milk. I have a cupboard full of sippy cups that we went through when initially trying to find a cup he would drink from and that we have tried to get him to drink milk from since. He has different cups that he will drink juice or water from. But if I put milk in them, the second he takes a sip and realizes what it is he will reject it. We tried a few months ago, with the help of his in-home therapist and teachers at school, to break him from only drinking milk from his cup. We tried the same cup with a different lid, different cups with this lid, etc. We also tried only offering him milk from an open cup and not giving him this one. All that these efforts just resulted in him not drinking milk for weeks. We finally raised the white flag and gave in. He has been very limited in his diet lately (a subject deserving of it's own post) so I don't want him to give up drinking his milk. So we went back to giving him his milk in his beloved cup.

Then... it went missing.  Cue panic

 Unfortunately this cup has been discontinued so I can't just run to the store to buy a new one. I have scoured the internet, searching Amazon, eBay, etc. without any luck. Yesterday I decided to post a picture of the cup on 2 Facebook pages that I have been a part of since before J was born. These are small pages with groups of woman with whom I have become close with and who have been a great source of support over the past 4 years. I posted the pic in hopes that one of them might have this cup knocking around. None of them did, but a few of them shared the pic along with a short story about why they were looking for it. From there it has taken on a life of it's own. The posts have been shared all over Facebook and seen by thousands of people! And people have responded! Last count there are 15-20 of these cups being sent to us from all over the country!  I am overwhelmed by the response and support - it warms my heart. Never underestimate the power of social media or the kindness of strangers!

Monday, September 8, 2014

Hello again...

WOW, to say it's been a long time would be an understatement lol. I started this blog with all good intentions. I planned to chronicle our journey as we learned to navigate the world of autism with my beautiful son J. I started out strong and then eventually petered out. As I mentioned in one of my earlier blog posts, I think I hit a wall and became burned out on the topic of autism so to speak. Not that I stopped living it or researching, or that I backed off from doing all that I can to help my son. However, I needed to back away from reading every single blog I could find on the topic, spending any free minute I had reading about various therapies, and obsessing over every single thing J did or didn't do and why certain things were or weren't working. I unintentionally stepped away from this blog for a while. Then, as often happens, life got busy and in the way and this poor old blog was neglected. Things have settled down a bit, so I am going to attempt writing again.   A LOT has gone on over the past 1.5 years, so we have lots of catching up to do :)

I need to update everyone on Jake's progress over the past year and a half  (can you believe he is going to be 4! next month?!?!) and on everything that has been going on with our family. Right now it's late so I'm not going to write too much. But here's a little preview of part of why we've been so busy...

Thursday, February 28, 2013

Time flies

Today we have J's annual EI review. I can't believe that it has already been a year since I first called EI with concerns that J wasn't talking yet. Autism wasn't on our radar yet, I was simply calling about a possible speech delay. I made the initial call towards the end of last Feb., a little bit after his 15 month well visit. His pedi had said we would discuss calling EI if he still wasn't talking by his 18 month well check. I didn't want to wait that long and called the next week. I am glad I got the ball rolling when I did. By his 18 month visit we were discussing his red flags, and at 19 months he received his initial diagnosis.
So today all 4 of his therapists (SEIT, ST, OT and floortime family trainer), his psych consult (who oversees his ABA program), our service coordinator, and a county rep for EI will all be coming to our house. That is quite the team for one little 2 year old!
I always have mixed feelings about these meetings. On one hand I love hearing others gush over my sweet boy. On the other, I always dread the part where we have to highlight and discuss all of his delays and the milestones he's not reaching. I know that last part is necessary to continue all of his services, but that doesn't make it any easier to hear. However I know we will also celebrate all of the progress J had made over the last year. That is the part I will focus on. And I really want to write a nice long post to let everyone know about all he has accomplished. I will definitely do that later. Right now I need to do some cleaning to get this place ready for all of out visitors! ;)

Tuesday, February 26, 2013

School pictures

J's first "school" picture

So J is almost 2.5 years old, and can you believe that this is his first "professional" picture?? I feel kind of guilty about that. However, it's not like I don't have a literally thousands of pics that I have taken of him stored on the computer, displayed around the house, posted to FB, and compiled into photo books. J has been my favorite subject to photograph. Pretty much since day one he has been a little ham. Always quick with a smile, looking right at the camera, and known for chasing after me once I have the camera out. Still, I was a bit nervous about this picture. For one it was going to be taken in his classroom at school, with big flashing lights, the furniture in disarray, and their daily routine thrown. They used his classroom for pictures for another group a couple of months ago and it stressed him out a bit. Secondly, getting those awesome pics of J hasn't been as easy lately. As I said before, in the past he has always been one to look at the camera and give a big smile. Lately that hasn't been happening so much. He is now more likely to look away or to just ignore the fact that I am trying to take his picture. I know that this could very well a typical 2 year old behavior, and possibly a passing phase. I hope so. I treasure all of the beautiful pictures I have of J, and look forward to capturing many many more smiles.
The day of this picture I brought him to school with the little order form filled out and told his teacher to just do their best. She asked if I wanted to stay and that they could do his picture first. Sure! So I took off my coat, put him up on the little step and backed up to make a fool out of myself jumping around and trying to get his attention. I was impressed with how well he did. I half expected him to cry or to try and get off of the step. Instead he sat there like a little model and looked around. He did knock over that red crayon a couple of times, but can you blame him - it was pretty tempting ;) And that little tan blob on the step near his feet is the toy potato he insisted on holding when I brought him up there. Everyone ooh's and ahh'd over how cute he was and we were all amazed at how long he sat there. In the meantime I was pretty much jumping up and down, singing his favorite songs, and trying to coax a little smile out of him. I am very pleased with the end result. I actually wish we were able to pick more than one pose. There was a cute one of him blowing a kiss back at me and one of him clapping his hands when I was singing "If you're happy and you know it".
This day was just another example of how J continues to surprise me. And yet another reminder that I need to relax. I get myself all nervous or worked up about a situation, and J sails through it with flying colors. And leaves me with a pretty cute picture to boot :)

Sunday, February 24, 2013

Radio Silence

     Well, after a false start in December, I think I am finally ready to start blogging again. For real this time (I hope LOL). I wrote in December about suffering from a bit of burnout. I had immersed myself into the world of autism and of trying learn all I could to help my son. And while I didn't slow down in my quest to do what is best for Jake, I did take a step back from the blogging world. I thought I was ready to return, but I guess I needed a bit more time. I think there were a couple of reasons for my silence. I will touch a bit on them, and then move on with my blog.
     When I first started this blog I had visions of writing a tremendous success story. I had read many blogs written by parents who watched their children suddenly thrive once they had therapies in place. Their children went from being nonverbal to gaining language and communication skills. Improvements were made in all areas, and everyone was amazed with their sudden progress. I also read several blogs written by parents whose children didn't reach this level of improvement, but I chose to focus on the "success" stories. (Not that ALL of the children didn't have successes of their own, but you know what I mean here). I was convinced that once we had all of J's therapies in place that we would suddenly see these marked improvements in his overall functioning. After sifting through the therapies available I came up with a plan of action, got his therapists in place, enrolled him in a pre-school 2 days a week, switched ST's, and waited. I waited to hear his voice. I waited for the day I could write my first "success" story blog post - the day J said his first word.  I continued to write blog posts and continued to follow along with my favorite mommy bloggers. As I waited I found myself wondering why. Why wasn't J seeing the improvements that these other children were seeing? When were his "words" going to come? Surely it would be any day now. So I waited a bit longer. And I am still waiting. And I eventually stopped writing because I think it was a bit hard for me not to be writing our "success" stories.
     But I realize that I need to stop waiting and relish in the here and now. Because J HAS had great successes. He has made many great improvements, and my pride in him grows every day. (And I owe him a nice big blog post about all of these amazing milestones he has reached) He is such a hard worker and such a little trooper for putting up with everything that we throw at him each day. I don't want to minimize the strides he has made and continues to make each day. And yes, I do realize that language isn't everything. And I understand that even if he does start talking it doesn't mean that all is suddenly right in the world. And J is an individual and it is not fair to compare him to other children. Logically I know all of these things. But sometimes I let myself lose sight of it all and get a bit wrapped up in my own head. I am going to make a conscience effort focus on the positives and on all of the strides my little man is making. Because, really, look at this face :)

Thursday, December 20, 2012

My Boy

I am writing this post in response to one of my favorite bloggers over at Reinventing Mommy. She has a wonderful blog about her journey with her son as the navigate the world of autism. She wrote a beautiful post   at Hopeful Parents in response to the unspeakable tragedy that happened last week and the way that some media outlets are linking to violence to autism. You can read it here. She has called for us to share with the world the stories of our children and to show what wonderful little beings our children with autism are. So, here's my story :)


Here is my boy giving his "cheese" face :) He is barely 2 years old and was diagnosed with autism at 19 months of age. However, his autism does NOT define him.

He is one of the happiest little boys you will ever meet, and he has an infectious smile that lights up the room. He enjoys puzzles, cars, blocks, and he loves playing with his animal toys. My boy is a whiz on his iPad. Each day I am surprised and amazed at the way he navigates it and is mastering the various educational apps. And he LOVES playing the educational games :)

J loves the Bubble Guppies, Little Einsteins, and Mickey Mouse Clubhouse. His favorite parts are the music sequences. He loves to dance along to the songs and does the motions with the characters. Recently he has been enjoying music videos from the Mother Goose Club on youtube. He's also been known to watch some of his cartoons in foreign languages on there as well - maybe he wants to be bilingual?? :)

We have random dance parties throughout the day. He loves getting down to some Old Macdonald and often requests to put on some Moose A Moose videos so that we can dance to the songs. If he hears a few beats of the Fresh Beat Band on the television he runs over for me to pick him up and dance with him. He enjoys when I sing songs to him and he will follow along with the motions to songs such as Wheels on the Bus and If You're Happy and you Know it.

Speaking of which, when he's happy you WILL know it! He emits happiness and excitement from head to toe. He will do a little bounce with a subtle flap of his hands and hop around the room with a huge grin on his face. Sometimes he will lay on his stomach and do a little belly bounce, while his hand and feet circle with excitement. It is hard not to smile yourself when you see how happy he is.

mid bounce

He has never raised a hand in anger or frustration. If something upsets him he may give a sound of disapproval, but is quick to recover. He has been pushed or hit at play dates and had other children take toys from him, but he has never struck back. He may seek me out or simply walk away, looking a bit confused as to why someone might want to hurt him.

He is currently nonverbal, so we are waiting to hear his voice. That doesn't mean he can't communicate with us though. He may not be able to say "I love you", but he shows it with his actions. He is quick to give hugs and squeezes, and will sometimes give little "love pat" on my shoulder when hugging me. If I am making dinner or otherwise occupied while he is playing, he will only go a few minutes before finding me to check in. He will give my leg a quick squeeze and go back about his business, only return a few minutes later.

He also communicates with us using pictures. He has a little book filled with pictures of some of his favorite food and toy items. If he wants or needs something he brings the picture to us. I love hearing the rip of the velcro as he tears out a picture, followed by his little footsteps padding over to find me. He will also grab our hand to guide us where he wants to go, and has picked up some basic signs and will use them as well.

He loves watching his reflection. I will often find him practicing his signs or doing the motions for different songs in the mirror. But really, can you blame him - look at this face

J LOVES fruit. Apples, grapes, strawberries, nectarines, plums, you name it. Especially bananas. He will usually sign for a banana as soon as we put him in his chair for a meal. He is a great eater. I am often surprised by just how much he will eat!

He has begun to find enjoyment in art. He will paint, color, glue, and loves to play with play dough.

J has taught me to truly appreciate the small things. Every new skill he learns or accomplishment he makes is cause for celebration. I don't take anything for granted with this beautiful boy. I know how hard he as worked for each and every milestone he has reached. He is such a trooper. He receives a total of 22 hours a week of therapy and has teachers coming in and out of the house all day. And he never complains. He meets each of them at the door with a smile, takes their hand, and leads them to his "classroom". I am in awe of him. He truly inspires me. 

These words can only begin to describe the wonder that is my son. Yes, he has autism. He is also loving, caring, happy, brilliant, innocent, joyous, funny, adorable, hard working, and the list goes on. This is what you should think of when you think of a person with autism. A little boy fill with joy and wonder who will melt your heart with his smile.

Wednesday, December 5, 2012

Finding a balance

When autism was first brought up in relation to J I made it my mission to learn all I could about it. I bought several books and started researching various therapies. I subscribed to many blogs by parents of children with autism, and started reading them from the beginning. Essentially I lived and breathed autism. As my husband and I wound down watching a TV show at night, I wasn't paying attention - I was too busy scouring the web for any information that I thought would be useful. While it is definitely essential to become educated and explore therapy options, I believe that I could have gone about it at a slower pace.
Around October I hit a wall. I would sit down to try and read a book and found myself rereading the same paragraph over and over because I wasn't absorbing it. I began to resent some of the stories I was reading in different blogs - their child is doing X therapy and getting Y results, why isn't J? I stopped visiting some online forums as frequently and avoided talking as much about ASD. I ignored my own blog. I was burnt out. Not by my son, but by my crazed quest to learn all I could in the shortest amount of time possible. I took a step back and let myself regroup. I still want to learn all I can about autism and do everything in my power to help J reach his potential. I just need to go about it in a more reasonable manner. I am ready to read and write blogs again, and I have a book that I am actually looking forward to reading. (yes, about yet another therapy lol) I just need to keep a healthy balance of seeking out information and giving myself some down time. And, of course, spending time with this awesome little guy.
J and his new Handy Manny doll. He doesn't watch the show, but hasn't wanted to put this guy down :)