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!

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...

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! ;)

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 :)

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 :)

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 :)

Cheese!

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.

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 :)

Belated Halloween post

Well it's a week late, but as they say, better late then never :)  Last week was Halloween and I decided to take J out to do a little trick-or-treating. It was a cold night with rain on the way, so the plan was just to hit our immediate neighbors. Mostly so they could see how cute he looked in his costume :)
I wasn't sure what to expect. I know that at 2 most kiddos don't really "get" the concept of Halloween so I went into it with an open mind. He was ecstatic to be set free and ran up each walkway. The first house greeted us with an already open door. J took that as an invitation and thought they were welcoming him in. They put a candy bar in his bucket (which I was holding for him) and he promptly took it out and held it for the rest of our adventure. At the next house I knocked at the door and he copied me. When our neighbor held out the bowl of candy he grabbed one and put it in his bucket.  At the next house he tried giving THEM a piece of candy ;)  He quickly caught on with knocking on the doors and eagerly ran up each walkway. He could have cared less about the candy, but he enjoyed the process.
At one point we ran into one of our neighbors and their children. They have a little girl who is just 2 days younger than J. That was the toughest part of the night for me. She was carrying her little bucket full of candy and chatting away. It has only been about 2 months since we last saw her, and her language has exploded. She was also  running up the steps to the porches, a skill that J has not yet mastered. It was a big wake up call as far as just how "behind" he is to his peers. But instead of dwelling on their differences we continued on and had a great time. Everyone thought he was just adorable (how could they not LOL) and we even brought home a few chocolate bars for me, oops, I mean J.
Here's a few pics

Getting a feel for his costume

What is on my hands??

ok, let's get these off

chilling with the iPad

holding his prized Twix bar

getting into mischief

And looking pretty darn cute!

Pumpkin Patch Pics

I am WAY behind in publishing my posts. Not that there's anyone waiting with bated breath to read them, but I want to try to stay somewhat up to date.
A couple of weeks a go we went to a local pumpkin farm to get, you guessed it, a pumpkin :)  This goes back to what I wrote about in my Changing Expectations post last month. I am making a conscience effort not to go into our various outings/occasions/experiences with a predetermined set of expectations, or with a picture of what the "perfect" version of the event will be. Of course with it being Fall my Facebook feed had been full of pictures of my friends' children enjoying the various pumpkin farms - pointing at and riding the animals, picking out their perfect pumpkin, doing various art activities and painting said pumpkins, etc. I wasn't going to let these visions cloud my experience with J. Our visit to the farm might look a little different than those of others, but that doesn't make it any less of an enjoyable experience. I chose one of the smaller, less crowded farms that doesn't have a ton of predetermined activities. My goal was to visit the farm, let J enjoy running around and taking in the sights, and to bring home a nice pumpkin. And, of course, get some awesome pics along the way. I think we succeeded...

As soon as we got there he was off..

He checked out the sheep

...and apparently he had something funny to say

I think that pumpkin is a bit too big

much better :)

exploring

checking out the hay maze

All in all we had a FUN time :)

Evaluation results

Yesterday I finally had the meeting at the local Autism clinic to go over the evaluation J had back in the beginning of September.  As I stated before I didn't bring J in for  the evaluation because I thought he would get a different diagnosis. I was simply trying to get a more thorough evaluation than he had the first time, and was hoping that the doctors would point me in the direction of some good resources, along with some recommendations for therapies etc. As I wrote about here I wasn't too impressed by the evaluation. I was at least hopeful that they would provide some useful information. Unfortunately that wasn't the case.
I didn't tell them about the diagnosis he already has, nor had I gone into specifics about the therapy he has been receiving. I wanted to get an unbiased opinion and see what they would recommend.
Well yesterday I received a diagnosis but not much else. They pretty much told me he has autism, handed me a printout from the Autism Speaks website, and referred me to a parent support group (which I am already a part of). I asked if they would recommend a specific type of therapy but they just said I should 

pick the one I feel would be the best fit. I asked if they could recommend an area pediatrician that is familiar with autism and they said that no one had ever asked them that before and they didn't have an answer for me. The write up they gave me on J was pretty generic and uninformative. If I hadn't already done a ton of research I would have been pretty lost at the end.

 I was very disappointed. I guess I was expecting more since this is a clinic that specializes in autism spectrum disorders. As far as they knew I hadn't done any research yet and the diagnosis was completely new to me. I anticipated/hoped that they would provide me with more information as well as a bit of a plan of action. In feel that they are doing parents a bit of a disservice and missing out on an opportunity to educate a whole population of parents. To think I first called to make an appointment back in April. If we hadn't lucked out and had our service coordinator find us the place to get a J's initial diagnosis we would have missed out on 7 months of therapy. And had we just gotten the diagnosis we would just be getting on the wait list for ABA. After of course I did my research, chose a therapy, and found the agency.
They DID however say that they feel J is on the milder end of the spectrum and that he should respond well to therapy. He lacks so many of the behavioral issues that often accompany autism, so in that we are fortunate. it is also great that we are catching this so early.

It is definitely not easy to sit in a room and have someone tell you your child has significant developmental delays and to have him receive a "label". But it doesn't change the awesomeness that is Jake. Having the paper in hand will help to keep the therapies coming. I will continue to advocate for him and to learn all I can to be best mom I can be to him. He is already making great strides and I have nothing but high hopes and expectations for him.

iPad mini giveaways!!

I have been slacking a bit this week with my posts. I have a few started that need to be finished up and published. I will be sure to get to them this weekend!
In the meantime, check out this super iPad mini giveaway on SmartAppsForKids. It is an awesome website that features and reviews iPad apps for children. They alert you to free apps and host some great giveaways. Right now they are giving away 10 iPad Mini'!!. IPads can be excellent resources for children with ASD. I would LOVE to win one for Jake. It would be the perfect size for his little hands!

And now, the wonderful ladies at The IMums are also giving some away. They are going to have TWELVE giveaways!! If you haven'nt checked out their site yet, hurry up and head over!! Here are the links to the giveaways!
#1 is here
Here's # 3 and Here is #3
#4
#5
#6
#7
#8
#9
#10
#11
#12
#13
#14

Changing Expectations

   As I wrote in my last post, there have been times I have gotten upset because an activity or an event we did with J didn't live up to my "expectations". I had one vision in my head of how things would play out, and when the reality didn't match the fantasy I was somewhat disappointed. I have decided that from now on I am not going to let these predetermined expectations to to cloud our experiences. I need to take each day as it comes and enjoy the moments as they happen. Instead of dwelling on the "what if's" or "if only's" I need to focus on the here and now and the joys and pleasures of the experiences in the moment.
   I have had two opportunities in the past few weeks to put myself to the test. The first was J's 2nd birthday party. In the weeks leading up to the party I was starting to get anxious. I knew that J wouldn't have an interest in opening presents or having "Happy Birthday" sung to him, and that he likely wouldn't show an interest in the cake or realize that everyone was there to see him. There would be other children there close to his age and I was worried that it would stand out that he isn't talking and interacting as much as they were.  What would everyone think? How would they react? Then, a few days before the party I realized that it didn't matter. Who cares what the others are thinking? And so what if J's party didn't look like that of other 2 year olds. J isn't any other 2 year old. He is his own unique, special, and wonderful individual. He has a smile that will light up the room and melt your heart. He is a happy little guy and loves being around people. If others see anything wrong with that then they don't know what they are missing out on. So I decided not to worry about J doing what was "expected" of him at his party. My goal was that he enjoyed himself and got to spend some time with family and friends that love him. And that everyone had a chance to see what a great little guy he is. I think we succeeded.
   J doesn't have a lot of stims, but a bit does come out when he is excited. He does what we call his "happy dance". He bounces a bit like tigger and does a slight hand flap. He looks like a very excited little boy who just can't contain himself. And that is exactly what he was as everyone was arrived - happy and excited. He seemed thrilled to have visitors, especially the children. He happy danced away as he greeted everyone and they just ate it up. It was great to see him try to interact with the other kids. He would play happily along side them, and a few times took their hand to lead them somewhere. When they were in the basement playroom  he brought one little girl over to go down the slide and another to go through his tunnel. I think they might have been a bit confused that he wasn't talking to them, but his smile definitely put them at ease and they followed along with him. He is definitely a little ladies man ;)
   I was worried about him getting over stimulated, but for the most part he held it together. He did NOT want to sit and have us sing to him which was fine. I had him look at the cake, sit on my lap for a minute, then let him go on his way. When it came time for gifts I was able to get him to rip a bit of paper on a present or two, but he quickly lost interest was off to other things. I opened the rest for him and he would come over and check in here and there. He definitely didn't get the concept that the gifts were for him, but that was fine. No one seemed to really notice or be concerned. He was happy and that was all that mattered. Towards the end you could tell he was getting antsy. It was getting close to his bedtime and he was hungry - he's not a big fan of eating in crowds. He settled down as everyone left and was able to enjoy a quick dinner and was out before his head hit the pillow. All in all, I think it was a very successful and enjoyable birthday for all. Especially J - and he's the only one that counts :)

Reading his new book

Checking out his Mickey Mouse Tractor

getting a closer look

Playing with a friend

Feeding mommy some yogurt

and wearing a little in the process

   

Expectations

    In the past when I thought of having children I had all kinds of dreams and expectations. I pictured how birthdays and holidays would go, and had visions of trips to the zoo, parks, etc and what they would look like. When J was an infant I would gaze into his eyes and couldn't wait for the day he would say "mommy". I dreamt of the day he would waddle over to me to give me a big hug and a kiss. As time has gone on I am still waiting for many of these things to happen, and those that have have looked different than I expected. 

    As you know, I am still waiting to hear "mommy". Or daddy, dog, ball, milk, more, ANYTHING. My guy likes to give hugs, but on his terms. If I ask for one he's not going to come over and give one. He will however run into my arms if I have been gone for a bit, and I absolutely love those moments. He also comes over for random hugs and cuddles throughout the day, and I cherish every minute of it.  He has yet to give me a kiss, though he will usually tolerate when I give him one. I am still hoping one day to see those little lips pucker up to plant one one me, or to at least see look of understanding when I ask for one, as he runs the other way because kisses are "icky" 

    There have been days when I have let these expectations not being met get to me. When the weather started getting nice this past spring and summer I began bringing Jake to various playgrounds. I envisioned him climbing up the jungle gyms and flying down the slides. Instead he acted as if the equipment wasn't even there. He was content to wander around aimlessly, and I spent most of the time bringing him back. I stopped meeting at the playgrounds for playdates with my mommies group. We never got to spend time with the other children and their moms, and it was hard for me to see children younger than him enjoying climbing, sliding, and running with the other kids while I tried to keep Jake from running away.  I eventually found a nice fenced in playground attached to a preschool that we were able to visit on the weekends. There Jake is able to explore as much as he wants, and I don't have to worry about him going to far. They also have some smaller equipment which I will carry Jake on to and encourage him to try climbing. He seems to enjoy himself, and when he is happy I am happy.

    Our trip to the zoo this summer was the cause of my own mini breakdown. My mother-in-law was visiting and we decided to take advantage of a nice and therapist free day to take Jake to see the animals. Since J doesn't really follow a point, I didn't really expect him to look at animals I pointed out to him. I figured we'd go to exhibits with the bigger animals walking around to and see if he noticed or took interest in them. I made the mistake of taking him out of the stroller early on. From his vantage point you couldn't see anything. We were at the polar bear exhibit and the animal was walking all around. I took him out so he could get a look. I *think he saw it, and seemed a bit interested. Next was the barn which was right next door, so I carried him over as he wouldn't be able to see anything from the stroller there either. I got him to look at the horse (for about 2 seconds), but failed to get him to notice the sheep, despite them being about 1 foot away and actually within reach. He was more interested in walking around aimlessly (though very happy) When it was time to move on he had a mini fit because he didn't want to be picked up and carried out. He isn't good at holding my hand and walking, unless of course it is in the direction he wants to go. Trying to get him back into the stroller was a major fail. He pitched a fit, threw his body around, etc. I carried him and we continued on to the sea lions. We went to the "underwater" part, where the sea lion swims by right in front of you. Again, I couldn't get him to take notice of the giant animal swimming in front of our faces. He was wriggling and trying to get down to run around. After a few more failed attempts to get him back in the stroller (and one very hot, sweaty mom), we headed back to the car. We were there just under an hour.

    I think things may have gone better if he had stayed in the stroller, but as I said, the way the zoo is set up he wouldn't have seen much. I guess what was hardest for me was seeing the other children at the zoo and their reactions to the animals. They were pointing, oohing & ahhing, and  seeking them out. Seeing a little girl probably about 12 months old in her mom's arms pointing to the sea lion as it swam by, saying "more, more" in anticipation of it coming back while J wouldn't even look at it tugged at my heart a bit. On a day to day basis I see him making great strides. When we are home he is such a delight and is really interested in interacting with us. (He is typically well behaved in public also) It's when we break out of our bubble and are around NT kids his age that it really hits me how delayed he is in so many areas. Just when I think I have fully come to terms with his dx and all that comes with it, I have a day like that day at the zoo.  It took all I could not to cry at the zoo (and in front of my MIL) I guess I am sometimes still grieving the loss of the life I had "expected" for J. Experiences like seeing my son enjoy the zoo and being able to watch him delight in the animals and share in his excitement. I need to remind myself that he is a very happy boy, and that to him he isn't feeling like he is missing out on anything.  And I still haven't given up hope that one day he WILL be able to have that zoo experience.

Baby steps to baths

I mentioned in my last post our plan for trying to make bath time less stressful with J. Since he loves playing at his water table I decided to try putting his water table in the shower. My plan is to try and ease him into being comfortable in the shower, and to hopefully clean him up in the process. The fist night my husband changed his diaper downstirs while I filled the water table. He carried him up already naked, and J was crying before they even got into the bathroom. I think he must have sensed that we were up to something and thought we were putting him in the tub. Since he was already upset I didn't push him. He pretty much saw the shower and ran. We scrapped the plan for the night.
    The next day I decided to try again. This time after changing his diaper I put a clean one on but left his pants off. I then opened the gate at the bottom of the stairs and asked him if he wanted to go play upstairs. I had the water table already full and the shower door open. He loves exploring the upstairs and usually does laps through the mater bedroom and bathroom, so I figured I would let him discover it on his own. During his first pass through he noticed the table and stopped to check it out, but kept going. As he made his way around again I sat on the bench in the shower and started playing in the table. When he made his way through again he stopped and splashed in the table from the outside, but wouldn't get in the shower. He did another lap and after his next pass through did this:

He played happily for a bit then got out to do another lap of the upstairs. When he came back into the bathroom I was able to take his shirt off and he got back in to play some more. He seemed to be really enjoying himself.

As he was playing I was able to get his diaper off also, but I'll spare you those pics LOl. While he played I lathered up a washcloth and tried washing him a bit here and there. If he started to get agitated I stopped. I didn't want to push him to far. Again, my main goal was to start getting him comfortable with being in the shower. I wasn't overly concerned with bathing him this time around. Like I said in the title, baby steps.
This afternoon I tried again. Today I brought him up in just his diaper. As soon as he walked in the bathroom and saw the table he got right in the shower. He played for quite a while without getting out at all, and even wanted the stall door closed. Again I washed him a bit here and there but didn't try to do too much. I even pulled one of the shower heads down and let him put his hand underneath. This time he cried when it was time to get OUT of the shower :)
Hopefully in a couple of days he'll be fine with a full cleaning. Washing his hair may be another story...

Doctor visits, Baths and Haircuts Part 2

 Another source of major stress for J has been the bath. He has pretty much cried for every bath since day one. When he was an infant we would bathe him in padded baby tub in the kitchen sink. He would cry from start to finish. I always thought (hoped) that he would enjoy baths better when we were able to put him in the tub. All of my friends with small children would tell me how much their little ones loved bag time, and how it was a relaxing and enjoyable part of their bed time routine. I had hoped that we would be able to experience that with J as well. When he was 10 months old we moved to our current house which had a nice bathtub for him. I had visions of him happily splashing and playing in the water while we bathed him. Yeah, not so much. He would stiffen his body so that we couldn't even sit him in the  tub. And he would get himself so worked up he would do that cry where he doesn't breathe for a few seconds - you know the one. Eventually my husband had to get in the tub with him. He holds him in front of himself as J screams while I try to wash him as well as I can.  A far cry from an enjoyable experience. We have also tried the shower, with DH bringing him in. We didn't fare any better with that, and a screaming, writhing J is extra slippery when wet. After a few months I got the idea to bring our netbook in the bathroom and I would play Bubble Guppies. This worked for a few weeks. He would calm down enough to watch his show, and we were able to get him pretty clean. Unfortunately, and I'm not sure why, but this eventually stopped working and he went back to screaming.  Needless to say, bath time is anything but relaxing and enjoyable.
     I am having a hard time pinpointing just what it is that J hates so much about baths. We bought him a water table this summer in an effort to get him more comfortable with the water. He LOVES it. He will play in the water for half an hour, splashing away and even dumping water on his head, chest, etc. So it doesn't seem to be the water itself he is afraid of. He even shocked us this summer and walked right into a local wading pool on 2 separate occasions.  I thought maybe it was the tub itself. But one day he walked into the bathroom and tried climbing into the tub. I picked him up and put him in and he walked around playing with all of the tub toys that he won't even glance at when we are trying to bathe him. So the tub doesn't seem to be the issue. I considered that maybe he doesn't like being naked, but if he's not getting a bath he loves running around in the buff. I fill the tub when he is downstairs so he isn't hearing the water rushing in. I have tried having the water ankle height and a bit higher and have played with the temperature of the water a bit. So far the right combination eludes me. I really wish I could figure out what it is that causes J so much anxiety. I feel awful hearing him scream and cry and be so obviously stressed out. And it definitely doesn't do anything for my stress level. There are some definite sensory issues here, I just need to figure out what they are. Unfortunately, baths are not optional, the little pigpen needs to get clean.
    I have a new plan we are going to try this weekend. The shower in the master bath is a fairly large walk-in. I am going to get a rubber mat to put on the floor (to make is less slippery) and then put his water table in the shower. I figure we can do baby steps and see if he will play with the water in there. And while he is playing I will do my best to wash and rinse him. I have no idea if it will work or not, but at this point I am willing to try anything!

After one of his first baths

And the stunned aftermath

    The last thing that causes J stress and anxiety is getting a haircut. Fortunately these don't occur as frequently as baths :) To date J has had 4 haircuts. The first one was just after his first birthday. I took him to one of those kids cuts places. There was a play area with a bunch of toys. J played mostly happily, but started to get a bit cranky as we had to wait longer than expected. When it came time for his haircut they tried sitting him on a type of  horse seat, like you would ride outside of a department store. He wasn't very balanced and needless to say he hated  it. I ends up holding him on my lap. As soon as the woman tried coming towards him with the scissors he lost it. He was wiggling and crying and wound up turned facing me. Somehow the woman was able to cut his hear while he was flailing around. It was not an enjoyable experience for anyone involved. J was miserable and crying, and I was stressed that his ear would get chopped while she was cutting his hair. Luckily we all made it out in one piece. I decided I would never take him to get a haircut by myself again.

Before haircut #1

and after :)

   The second haircut happened while we were visiting my in-laws in Florida. As I was snapping pics of J on the beach it became painfully obvious that he was in need of another haircut. I found a kiddie hair cutting place and off we went. This time I had back up - my husband and mother in law. We also had out trusty net book loaded with Bubble Guppies. This salon had a little plane for J to sit in. It was a more stable seat than the horse. J actually ok for a few seconds at the beginning and I was able to distract him a bit with the Guppies. He became increasingly upset, but again he was able to get his haircut unscathed.

At the beach before haircut #2

Sitting in his plane waiting 

Swinging at the park on the way home :)

 
    Haircuts #3 & 4 happened at a different kids cuts place near our house, with similar results. Again, I made sure to have my husband and some Bubble Guppies on hand. There is a small toy area, so I always make sure to arrive a few minutes early so that J has some time to relax and play. This weekend when we went it was much the same as his previous visits. He is ok for the first few minutes, but gets increasingly upset as the hair cut progresses. The Bubble Guppies become a bit useless as by that point he's really not paying attention to anything but trying to get out of the chair. Luckily the woman who cuts his hair is very speedy and confident. I would be terrified of going at a flailing boy with scissors, but she is great at it. Our appointment was at 9:30 and we were in the car and on our way home by 9:38. Getting his haircut is definitely not one of J's favorite things, but luckily they only happen every few months or so.

The day before his last much needed haircut

and enjoying his post-cut sucker :)