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 :)

SpeechHero

Since J is still nonverbal, we have been starting to use PECS with him. (I will write another post about exactly what PECS are soon) With all of the new technology out there, especially the iPad, there are many Apps coming out that help nonverbal people communicate. I have been researching these various app, trying to pick the one that will be the best fit for J. I am thinking that the SpeechHero app sounds like the best fit for us. An awesome site The iMums is doing a giveaway for the app. Cross your fingers - I am entering for J. Hopefully we will win! If we do I'll write up a review of the app here. Here's a link to the giveaway if you want to check it out for yourself!
SpeechHero AAC giveaway

Doctor visits, Baths and Haircuts Part 1

    There are 3 things in life that J hates and that cause him stress. They are baths, doctor visits, and haircuts. We got to experience all 3 this weekend. Lucky us LOL
    J had his 2 year well visit today. We saw the same NP we saw for his 18 month well check she was the first person to recommend that we have J evaluated for Autism. I am thankful every day that she didn't take the "wait and see" approach. I had called early intervention after his 15 month visit. They had approved him for speech and a SEIT once a week, but no one ever mentioned autism. I had my suspicions, and was thankful that my concerns weren't brushed aside. I credit her for getting the ball rolling. She was happy to see J today, and was pleased with his progress over the past 6 months. Going over his accomplishments was definitely the highlight of our visit. The rest, not so much.
    J has always hated being weighed and measured at the doctor's office. I can't say I blame him, as getting on the scale often makes me want to cry, but I'd like to think I handle it a bit better ;)  They make us strip him down to his diaper, and put him on the scale. He has always cried for this, and it has become increasingly difficult the stronger and larger he has gotten. Once he was able to sit on the scale he started trying to climb off and get to me. They always make me step away in an effort to keep him from reaching out to me, but that doesn't really work. He cries, he screams, and he gets himself completely worked up. Our current pediatrician's office doesn't use a digital scale, so it usually takes then a few minutes to get a weight on him. I was hopeful for today's visit since once they hit 2 they have the children stand on the scale. Unfortunately he still had to strip down to his diaper. I don't know if this was the cause of hits stress or not, but he was NOT standing on that scale. We tried sitting him on the other scale, but that just increases his anxiety. In the end my husband had to hold him and stand in the scale, then he had to stand on it by himself and they find the difference. Thank goodness he had the day off today, as I may have busted out the tears myself  if I had to do that! Since they couldn't get a height off of him from the scale, we had to lay him on the table, which he hated equally a much. Again I was thankful to have DH with me, as I often feed off if J's anxiety and stress a bit myself. We were to distract him for a while with some Bubble Guppies, and he was calm and happy while we chatted with the NP. All was going fine until shot time. He had a flu shot and a finger prick to test for lead. Needless to say, he was not happy for either of those. I can understand crying for the needles. I wish there was something I could do to ease his anxiety over stepping on the scale. He isn't due for any sites at his next 2 visits, so hopefully they will go more smoothly. We have 6 months to prepare.

Getting weighed at 1 month

and 1 year

    

Breaking up is hard to do

One of the (many) things I don't miss about dating is the break-up. You meet someone, let them into your life, have some fun and make some memories. Then one day you (or one of you) realize that things aren't quite working out the way you had hoped and you decide it's time to end things. I have always hated that part of a relationship. Now that I am married and have a family I thought I was done with break ups. Luckily there is no break-up as far as my marriage is concerned, but there is another relationship tha has to come to an end - the one between out family and J's speech therapist.
    J has had his current ST since around the beginning of June. After receiving his PDD-NOS diagnosis, I had decided I wanted to give DIR/Floortime a chance. At the time J was only receiving ST and a SEIT once a week each. As we were approved for an increase to 3 days per week, I also requested a change in providers. We switched from more "traditional" therapists to a team trained in Floortime. We also added on an OT who also practiced Floortime.  J and I quickly developed a rapport with his new teachers, and I found them to be very knowledgeable and invested in their jobs. J really seemed to like them and worked easily with them. As the summer went on and I continued to research, I made the decision to switch to an ABA based program. J started with his new SEIT, JT, at the beginning of September. His ST and OT  remained the same. I definitely see value in Floortime, and I feel that J has benefited, and will continue to benefit, from it. However, my husband and I both feel that he has been missing out on actual speech therapy. His speech sessions have all been FT based, which are completely child led. A majority of the sessions involve us following him around the house and trying to get him to engage with us. While I think that there is a place for this style,of therapy, I also feel that he needs some structured speech therapy. J is still nonverbal, and I want to make sure we do all we can to help him develop language.
    In the past month I have watched J thrive with the structure of his ABA sessions. I was nervous before it began, but he has impressed me with how well he has adjusted to the change is therapy styles. He is no longer trying to leave the room, and is sitting at the table for longer periods. JT has seen progress with his completion of tasks as well. While it may be slow, we are seeing progress.  In an effort to try to have him get more out of his ST sessions, we have decided to switch to a more traditional speech therapist. Actually, we will be switching to one that uses the Verbal Behavior Approach, which is essentially another form of ABA. I am hoping that we can build upon the success he has already had with ABA.

    Unfortunately switching to the new SLP also means losing our current one, which is where the break up comes in. I have really enjoyed working with her, and she has a wealth of knowledge about DIR/Floortime. She works so well with J and he really seems to like her as well. However it has been nagging at the back of my mind that I want to give a more structured form of ST another try. I found myself putting of making the switch because I felt guilty about switching therapists. I struggled with the decision for a few weeks, but in the end I realized that I can't worry about the feelings of others. I need to put J's best interest first and foremost, and do what I feel is best for him. With a heavy heart I made a call to our service coordinator to get the ball rolling for the switch to be made. Tomorrow will be J's last session with his current therapist, and his new SLP will start on Monday. I am grateful for all his current therapist has done for us, and I really feel she cares for J. I am confident that I am making the right decision, but I still feel a bit sad. And I wonder if having all of these people come in and out of J's life will have a negative effect on him. So far he has dealt with all of the transitions excellently. I hope that will be the case next week also.  So tomorrow we say goodbye to someone that has been part of out daily lives for the past 4.5months and get ready to welcome in someone new.  Hopefully our expectations will be exceeded.

Happy Birthday

2 years ago today we welcomed our little bundle of joy in to the world. Our lives have been better for it every day since. In honor of J's birthday, here's a little photo bomb :)

2 years old!!!

School Days

After getting off to a rocky start last week, J had a great day at preschool today! This was his first full 1.5hr day. I was a bit nervous about how he would do. On Tuesday when I dropped him off for an hour he was clingy and shed some tears when I left. JT said he stopped for a while and didn't start again till they put his coat on. He spent most of that day attached to JT.
    Today was better right from the start. When we arrived he immediately took off to explore and I was able to leave without any tears. JT said he played with some toys and that he was checking out the other kids. He sat on her lap at story time and didn't get antsy till the end. He also sat independently at the table and played with play-do, and sat and ate snack with all of his friends. He even did a hand over hand art project! At the end they went outside to play and JT said he ran all around. He was a little upset when they had to go back inside  so he was a little whiny when I picked him up, but  JT said that was his only fussy period. His preschool teachers said what a great job he did, and he even waved good-bye to them!
    After the short drive home J and JT went right upstairs and got to work. We both thought he might be too tired to do much, but she was able to get through some trials and he did well. I am so proud of J! He did such a great job with everything today, and I was impressed with him. It definitely gives me hope of great things to come.

jumping for joy

What part of "not talking" don't you understand?

Well-meaning family/acquaintance "Is J talking yet?"

Me "No, not yet"

WMF/A "He's saying a few words though, right?"

Me "No, he's not talking yet"

WMFM/A "He says mama and dada though, right?"

Me "No, he's not talking at all yet"

WMFM/A "oh..."   "insert change of subject here"