School: Day 8

Well, I'm happy to report that after all of that bitching and moaning last week (and possibly a little foot stomping too) school Monday was back to 'normal'.

After a quick stop at McDonald's (just to be sure if Carson was angry this time it had nothing to do with food lol) and home to let the dogs out we made it to school 10 minutes early to see Patty.  Carson seemed eager to get in the building and even pushed the button on the door to have the lady in the office buzz us into the building.

Patty was waiting for us when I signed in and immediately grabbed Carson's hand and took him to the stairs.  She had an idea for having him climb the stairs, pick up a rubber rat, bat spider etc (Halloween theme) and then walk back down the stairs and put them in a bucket.  He climbed the stairs fairly well but refused to pick up the critters.  He then made his way down the stairs with Patty while holding onto the railing.  He was doing really great.  Up again to the landing and then a line of kids were coming down for recess.  He walked down again and then stood at the bottom of the stairs and watched curiously as another line of children made their way down the stairs to go outside.  It was really cute to see him so interested in these children.  He seemed to want to follow them down the hall but stayed with me.

When we got to Amber's room I found out that we had a new student in the class!  A little girl.  Very cute and very tiny.  I don't know what her primary diagnosis is but currently she is in a wheelchair and a body cast because of hip surgery.  Her mother stayed in the room with us and we chatted a lot while the kids got busy.  Jen stayed with Carson and Patty stayed with this little girl just to see what it was that she was capable of doing since she had only seen her profile in an email she had received. 

Jen put Carson on a scooter board on his stomach and had him pull himself with his arms into the hallway.  She grabbed a Magna-Doodle to take out into the hallway for a little fine motor as well.  I decided since there seemed to be a lot of chaos going on that I would just sit and wait for them to return.  Carson didn't seem to miss me too much, but I'm sure a lot of that had to do with the fact that he loves Jen-and I'm pretty sure she loves him too :)

 

Jen and Carson returned to the classroom and played on the floor with Play-Doh and alphabet stamps until it was time for Carson to go with LaQuita for speech.

 

I was really happy when we got to the table with LaQuita and she had her iPad ready to go for Carson.  She had a new app called Bitsboard which is basically flash cards BUT instead of "This is the ______________" it will show 4 pictures and will ask which one doesn't match or which is an animal etc.  Carson did great with this.  I think it is because he gets the instant feedback from the app.  In the end he ended up getting officially 6 out of 10 right but there were a few that were sort-of confusing.  Pick the two that go together:  It would have two pictures of fruit, a picture of a mouth and then a picture of a car.  He would pick the fruit and the mouth.  So while technically he got it wrong because they wanted both of the fruit pictures to match he also got it right because you eat fruit.

 

LaQuita then gave him his iPad and asked him to write his answers instead of touching the pictures on her iPad.  He wasn't really into this but he was goofing off on it.  She said something to him about being funny and he wrote "hilarious".  We all cracked up at that one.

 

Because Patty wasn't able to work with him much because she was learning about the new little girl, she asked if we would be able to stay for about 15 minutes more so she could have some extra time with him.  I said yes and was happy to sit with LaQuita and talk about Carson and my personal goals for him.  She understood when I told her that I thought that he did much better working with an iPad or something similar as opposed to something that doesn't give any feedback. 

 

Next week we have an IEP meeting before class.  To save time Amber e-mailed me a copy to go over so they wouldn't have to spend a lot of time going over it with me.  I have to admit it broke my heart.  They have either changed the format of the way they are doing the IEP forms or I have just never paid attention to them before because this one had a LOT more information in it than I was prepared for.

 

Basically it states that in some areas such as speech and language he is measuring about where a 2-year-old would.  Then in other areas such as gross motor he is only about where a 3-year-old is.  ECO is a test they do that measures on a scale from 1-7 (7 being age appropriate with no concerns) to check for social and emotional skills (he scored a 3), Acquiring and Using Knowledge and Skills (he scored a 4), and Self-Help Skills (he scored a 3).  It's heartbreaking.  I know it have said it before but I swear as a mother you don't see your child's disabilities.  I mean you SEE them but you don't really think about what it looks like to others, how professionals perceive your child. 

 

Next week Carson has 3 appointments two of which are pediatrics and genetics.  I think it's time that I really press them about what they think my options are regarding his future and what I should be planning for.

Holidays

Last week it snowed. Not much. Just enough to really get me thinking about how much this time of year and the holiday season is such a double-edged sword for us.  To start, I LOVE Halloween. It has to be my favorite holiday. I love dressing up and going out trick-or-treating. I did it until I was probably 19 and too old to be doing it but I didn't care. It's fun to see all the kids dressed up in their costumes and running amuck in the streets. 

This past Halloween wasn't so much fun.  Carson outgrew his costume in a 2 week span and I didn't figure it out until 5:30 pm Halloween night. He had fallen asleep in the car on the way home from my mom's house and instead of waking him up I just let him sleep so that I could get ready myself. I woke him up to put him in his costume and it didn't fit! The thing that sucked the most was that he was supposed to go as a dinosaur and I was a Jurassic Park employee. I even had make-up on to make it look like half of my face was tore up from a Dino scratch. So in a panic I threw him in a matching pair of camouflage sweats and told everyone he was an Army man. I didn't have time to change so I just went with it.

We met my sister in her old neighborhood and put Carson in his stroller since he can't walk very steady or long distances. It was bitter cold out. We had blankets and coats but I didn't have gloves for him because they were built into his other costume so we tried to put socks on his hands knowing he didn't have the dexterity to take them off but eventually he figured out how to get them off with his teeth.  It was such a disaster.   He kept fighting to get out of his stroller so I was excited and thought he wanted to go door to door with his sister but when we got to the first house he just wanted to go inside where it was warm. 

We ended up having Mike take him to my mom's house since it was about 2 miles away and hang out there while my sister and I took Baylee and her daughter around the neighborhood.  She then drove us to our mom's house when we were done because Mike had taken the car. 

Carson didn't care that he didn't get to go trick-or-treating, but I did. I want so desperately for him to have a 'normal' childhood, to experience the same things that his sister does and not miss out on even the littlest of things. But that's not how it works. 

I just bought front row tickets to go see the Cincinnati Ballet's "The Nutcracker" as a surprise for Baylee since she takes ballet lessons. Guess how many tickets I bought?  Two. One for me and one for her.  Of course price was a factor. If I had bought 4 we would be in the loge for sure. BUT the real reason I only bought 2 is because I'm afraid to take Carson.  A few months back a friend of mine (who I met on Facebook in a closed group for our families with children with the same diagnosis) bought tickets to see the Broadway production of Disney's Beauty and the Beast for herself, her two daughters (one of which is a 15q kid) and her daughter's nurse.  They were literally THROWN OUT of the performance because her daughter was being 'too loud'. If she is anything like Carson I'm sure she was squealing and cooing like he does when he is happy. Apparently the other patrons didn't complain about the noise it was just a decision that the venue made because they have standards to uphold. 

She posted on Facebook before they left pictures of how excited they all were to be going and then a couple of hours later she posts how embarrassed she was and what had happened. Of course we all cried discrimination. It was on the local news in Boston and everything but they stood firm.  They claimed they offered for them to stand in the lobby and watch the performance on a TV!!! Unbelievable.  The little girl is in a wheelchair AND has a hearing loss like Carson.  No way she would be able to hear a TV in the lobby.  It's just so unfair that so many people feel like our children should be locked away and never seen or heard, their rights don't matter because people assume that they don't think or feel just like everyone else.  Like the big uproar about Disney's new park policies about the handicapped 'fast pass' but that's another story.

Halloween is in 2 days.  I'm prepared this time.  We tried on his costume yesterday - he's going as an astronaut - and it fits!  It's not going to be as cold this year so that's a plus but it is going to rain.  We have umbrellas or I'm thinking of making his stroller a rocket ship....

XX

 

School: Day 7

Home today from school pretty pissed off.  If I ever needed reassurance that thinking about homeschooling Carson was a good idea, I got it today.

Carson and I showed up to school about 10 minutes early today so that we could work on stairs with Patty.  When we got to the office she was waiting for us.  We started going up the steps and she began to tell me that she had received an e-mail from someone higher up that they had changed the schedule and she wasn't happy about it.  She was telling me that she was getting discouraged because Carson hasn't met his PT goal (which is to go up and down stairs freely with no help-I know I have complained about this before).  I told her that maybe it is time to amend the goal.  I have absolutely no problem with Carson going up and down stairs holding onto something..I actually would prefer it.

After doing the stairs a few times to let Patty vent and try to get Carson working towards his (new) goal we made our way down to Amber's room.  (Cue the doom music).  We get there and find Jen and the other little boy in the room waiting for everyone else to arrive.  So I'm already starting to get nervous because Amber's room is LOADED with toys.  Gee, that couldn't possibly be a distraction, could it?  And now as I stand here writing this I'm wondering how that little boy knew to go to Amber's room and not the music room because his mom was sitting outside the office and I saw him run down there without any instruction which is now making me think they were notified ahead of time.  Hmmm....

So anyway I'm getting off topic here.  So the new idea is to have ALL of the therapists in one room and then switch off (or so I thought).  When Amber showed up she handed me a questionnaire and asked me to fill it out so I sat at a table and waited to see how this was all going to work.

The first half hour of us being there was a total WASTE.  It was Amber conducting preschool singing the days of the week song and the weather-watcher song and what day is it? And what does the weather panda need to wear today?  Total crap.  I mean in the whole scheme of things not total crap but I'm sorry, Carson isn't there to learn what day it is.  I teach him all of that and more AT HOME.  He is there to get his allotted PT OT and speech.  Which has now been cut significantly.  Poor Jen and Patty had to sit and struggle to keep Carson calm and on task while this droned on and on.  Now I see why Patty was so upset in the hallway. 

Then when that was done LaQuita read a book.  Which book? I have no idea because by that point Carson had made his way to me and was sitting on my lap shaking his head 'no' the whole time while I was trying to reason with him and tell him that this was the way it was going to be now.  I see why the kid was so upset.  For one he doesn't handle change very well (neither do I, if you can tell) and for two, sitting has never been his strong suit.  Maybe that is the idea?  I have no clue.

After the story and trying to do a timeline with items to match the story (again no clue) they broke off into "centers" where Carson went with Jen and Patty and the other little boy went with LaQuita.  Amber mysteriously went with LaQuita and left me alone at the table with my paper which had long-since been finished. 

So picture this: When we were in the music room we had full run of the entire room.  In Amber's room the were stuck on a 10X10 mat.  No place to do an obstacle course or anything.  They had just enough room to bring in a stool to stand on and jump off of and do some yoga.  Again, with the toys right beside them just tempting Carson to come play.  Jen did try to get him to mimic her writing numbers but instead he would actually write out the number and not draw the number.  It was kinda funny.  They were also passing a pumpkin back and forth and they were impressed at how easily he could pick it up (it was about 5 pounds.  But then I told them he can carry a gallon of milk and then it wasn't so impressive).

Somewhere during this time Amy popped in to drop off some paperwork to Amber and didn't even bother to look my way or Carson's.  I would like to think that she was really busy but they don't have any other students on Mondays so I don't see how that's possible especially since he was right by the door.

So we switch and Carson goes over to LaQuita (with me) and the other little boy and Amber go to another table.  We get out his iPad and she is wanting him to answer questions about pictures she is showing (girl painting, eating etc) again things that aren't on his IEP and things that I'm not all that concerned with him knowing right now.  He just needs to learn how to communicate what he needs or wants at the present time.  I'll cross the "the girl is painting" bridge in a few years.  Am I being unreasonable?  Possibly.  But to be honest, I don't care.  If we push him too hard into something that he doesn't understand or want to do he'll shut down.  I know my kid and I've seen it before.

So then giving up on that idea for today LaQuita started asking him questions about himself.  His dogs, their colors, how old he was etc.  He then in succession wrote:  ANGRY.  HUNGRY.  ARBYS.  It was a nice icebreaker, it made us laugh at least considering how mad I was by this point.  He then wrote "lopsided" and slung himself sideways in my lap.  Goofy kid.

It was the end of our time together.  Patty came in and said that she had spoken to Jody (the coordinator) about the new schedule and the concern that not only were they taking time from actual therapy but that it wasn't really geared for Carson anymore.  Jody asked that we give it a couple of weeks to get used to it. 

So that's what I've decided to do.  Give it a couple of weeks and if we're not happy I am making the decision to pull him from the program and seek private therapy elsewhere.  I will be home full time by then so I won't have to worry about a work schedule to adhere to.  I understand that there will be times in Carson's life where he will have to get used to change.  I just don't think this is necessary. 

So for now we are home, decompressing.  I can't wait for Mike to come home from work to tell him all about this day and see what he thinks about it all.  And no, Carson does not get Arby's for dinner.  He gets chicken and green beans ;)  

Fall Days

Today I decided to get the kids out of the house for a little bit while Mike stayed home to work on putting new carpet down in the living room and hallway.  We went to a local farm called Bonnybrook for their fall festival which runs every weekend from the beginning of September to the end of October.  It is really a fun place for the kids to go and it is only about 10 minutes from our house.

I loaded the car with Carson's stroller and diaper bag (which I camouflage by using one of my Thirty-One bags ) and headed out the door.  When we got to Bonnybrook we put Carson in his stroller and went into the main barn to see what they had for sale.  The place was packed and honestly not big enough for our stroller to go between the displays.  I pushed him to one side and watched as Baylee went in and out of the set-ups to see if there was anything she really liked.  We had gone there last year with Amber, Carson's teacher and the rest of her preschool class and had been able to pay one price and ride the wagon and pick a pumpkin for one price.  (Literally pick.  They give you pruning shears and tell you to have at it.)  This year they were weighing pumpkins in the patch so you weren't really sure how much it was until you had already cut it from the vine and taken it up to be weighed.  Knowing I only had $20 on me I decided that the best thing to do would be to just buy the ones that were already priced in their little store. 

I picked a really cool warty pumpkin and I let the kids pick theirs out themselves.  Carson wasn't really into it so the first one that he kicked was the one that he got.  Baylee took her time finding just the right one.  We paid for our pumpkins and took them to the car.  Afterwards we headed to the horse barn to see the animals that we could pet.

 

 

Carson really loved the chickens. 

 

We then went to the other side of the barn and watched as Baylee was able to ride a horse.  Carson laughed as he watched his sissy on this beautiful majestic animal.  My heart kind-of broke for him knowing that this was something that he would not be able to do.  For one, I didn't know if he would even WANT to ride it and if he did, I don't know if he would know how to or be able to hold on to the reigns so that he wouldn't fall off.

 

When we left the barn we went over to Horseshoe Hill which is basically a hill that has a  100 ft. culvert pipe down the middle of it and you can slide down once you scale the hill.  Baylee did it a couple of times as we watched.  As we were making our way back to the main barn Carson started screaming and looking back towards the hill.  I got him out of the stroller and carried him to the top.  When it was our turn I sat down, placed him on my lap and down we went.  It was fun and scary at the same time.  There is no way to slow yourself down and then at the end there is a large bump which hurts your butt when you land.  Carson loved it.  That's the daredevil in him.  He wanted to go again but by then I was tired and thirsty.

 

We made it to the main barn and stood in line at the concession stand to get a drink and a soft pretzel.  The poor girl standing in front of us kept getting kicked in the back of the leg by Carson because he was starting to get really antsy.  By the time we made it to the front to order he had ripped off his shoes and socks (it was only 62 degrees outside) and was screaming at the top of his lungs.  At this point it never really phases me anymore but there were a lot of people looking our direction as I'm trying to navigate my way through the crowd to get to a quiet corner to give him a drink of my pop and at least get his shoes back on him before we headed to the car.

 

Once I got Baylee and Carson in the car I handed him my cup and loaded the stroller into the back.  When I tried to take the cup away from him he started screaming again.  I watched as he chugged half of my pop down without stopping.  The poor kid was just thirsty.  I felt so bad.  I had left his iPad in the car because I didn't want it lost or stolen so he basically had no way to tell me that was what he wanted.  Lesson learned. 

 

We left Bonnybrook and drove just a short distance down the road and went to Pringle's Orchard to buy apples.  Carson loves this place.  We had gone there Friday and bought Jonagold apples to make apple pies and I wanted to get some more to freeze because the pie turned out so great.  This time we bought McIntosh apples and some Red Delicious.  They are a family run orchard and I love being able to support the local economy. 

 

On the way back to our house, we turned onto our street and noticed a house was on fire!  I called 911 and waited for help to arrive.  I was so surreal to be standing in the middle of my road (about 3 miles from my house) and watch this house burn.  The next door neighbor ran over and told us that the people who lived there had just left about 10 minutes previously and that he thought that the dog was probably the only living thing in the residence.  I honestly thought about running up to the house to see if we could break a window or something on the opposite side to see if we could get the dog out but then the neighbor told us it was natural gas and that was enough to keep me on the street.  Living in the country has it's pros but this was definitely a con.  It took the local fire department about 10 minutes to get to the house.  Within that amount of time the fire had engulfed probably 75% of the house and the entire area was so smoky.  Carson was excited to see all of the fire trucks and such but it really made me reevaluate everything.

 

Those firemen ran to that house without flinching.  I have never seen a house on fire before that wasn't just for practice.  We left when another township's fire trucks started showing up because we were on a one lane road and we didn't want to be in the way.  I can only hope that those people have a place to sleep tonight either with help from family and friends or the Red Cross.

 

XX

Crazy Day

Yesterday has to be one for the record books. I woke up in the morning to find Mike Carson and the dog in bed with me. I was barely even on the bed laying on my side with my knees pulled up to my chest. Carson was lying sideways with his feet on my head, Mike was laying normal with plenty of room ( minus Carson's head on his pillow ) and Daphne our Great Dane was stretched out across the foot of the bed. It must've looked really funny from the outside. 

We got up and ate a quick breakfast before Baylee and I headed to the library to drop off the pumpkins we decorated for their annual contest. Carson seemed content hanging with Mike and since he is usually a bear at the library anyway I figured it was best for him to stay home. 

When we returned, I decided to fold laundry on our bed and Carson came in to my room too to hang out and watch.  I had a pile of towels to put in the hall closet and left for only a few seconds to do that and when I got back to my room Carson was coming out of my bathroom with wet hair. I ran into the bathroom thinking he had put his iPad in my bathtub and I needed to save it, but nooooooo, he had put the top of his head in my toilet!  The lid was up and the toilet seat and the floor in front of the toilet were all wet and there were drips all over the floor to where Carson was standing.  Of course I freaked out - not really at him I knew he didn't know any better and sanitation wasn't even really an issue either because Mike had cleaned the bathroom while Baylee and I were gone - but it was the fact that he could've drowned himself. 

I locked the bathroom door and took him down the hall to his and Baylee's bathroom and gave him a bath just to be sure he wasn't contaminated.  As soon as I put him in the water he stood up and started screaming. I thought maybe the water was too warm seeing as it is becoming colder here and thought maybe he was cold from the water dripping on him but when I put my forearm up to the faucet the water temp was fine. He kept trying to climb out of the tub and wasn't calm until I knelt down next to the tub myself to show him that I wasn't leaving the room.  I have no idea where this fear is coming from. When he was little I put bubbles in the tub once and he screamed and cowered in the corner as the bubbles floated closer to him and I never put bubbles in the tub again after that.  So needless to say I washed him quickly and got him out just to show him that I can be depended on to save him from things that he is afraid of. 

We went into his room and sat in front of the electric space heater to warm up since he was shivering from being so cold.  I got up and went to the hall closet to get another towel since he was now sitting on the one I had to dry him off but by the time I got back to his room his little naked butt was jumping on his knees on his bed laughing and screaming his happy screams. I think you can see where this is going: he peed on his bed.  So off went his sheets and into the washing machine.  As I was putting the detergent into the machine I looked to the left and saw him in the bathroom with the sink faucet on.  I thought maybe his hand was wet and he was washing it off but since nothing has gone as planned with him today I have no idea why I thought it would start then. Somehow he managed to get the water from the faucet to spray all over the bathroom. It wasn't just a little spray of water either.  I could've mopped the floor with the amount off water that was on it. Not to mention the fact that now Carson was soaked again. All I could do was laugh. It was either that or cry. 

So again I dried him off and set him in front of the heater to warm up. ( It was only 47 degrees outside by this point. ) After a couple of minutes I put him in a diaper and sweatpants and a t-shirt.  He went off into the living room with Baylee and Mike. I heard a loud bang, silence and then screaming. I ran into the room to see Carson getting up off the floor next to our coffee table holding his cheek. It was one of those things where he was hurt so badly that he wanted to cry but couldn't. I picked him up and bounced him in my arms to try to get him to catch his breath while Mike went to get the Boo Boo Buddy from the freezer.  He cried for a while and actually let us keep the cold pack in his cheek so it was pretty obvious he had really hit the table hard.  There wasn't a knot or any swelling so I wasn't too worried about it. No ER visit this time. He does have a decent bruise across his cheek though.

What a stressful day. I'm hoping that today is less eventful... 

XX

School: Day 6

School Monday was a little different than it has been for the past few weeks, it was basically a 'free day' for Carson.  It was nice to decompress after weeks of ups and downs with Carson and not having to sit and watch the therapists struggle to get him to comply with their itinerary for the day.

I have been working on compiling a list for Jen to figure out all of the foods that Carson will and will not eat to try to work on eating better with his SPD.  It honestly is hard to sit and think, 'ok, what did he have for lunch last Tuesday and what did he refuse to eat? '  It is a work in progress.  I am hoping to be able to hand it in next week.

Something new that Carson has started doing in the past week is he is trying to count on his fingers.  The apples song in PT right now has a verse at the end where it goes: pick up all the apples, pick up all the apples, 1-2-3, 1-2-3 and both Jen and Patty take his fingers and try to make him hold up the correct number of fingers.  He now will take one hand and try to pry his little fingers up to make the right numbers.  It is really hard for him.  He doesn't have the dexterity to really do it but now he has figured out that each finger represents a number so now he will point to the ring finger and know that it is the number 3.  It's such a neat thing to see how he is really getting things now and comprehending things that I hate to admit that I never thought would happen.

We are having an IEP meeting in two weeks and I am hoping that his goals will be modified to really challenge him this year.  I am still really trying to figure out what our options are for next year.  I am not sure if I am legally allowed to red-shirt him for kindergarten and have him start when he is 6 turning 7 (which would buy me another year to really figure out what is going to be best for him) .  I received an advertisement in the mail yesterday for ECOT which is an online public school program (AND FREE) where Carson may be able to attend school from home online.  It says that they accept children who are on IEP's but I'm not sure if that includes children with disabilities or if it's more for children with ADD or dyslexia etc.  I am going to request more information and cross my fingers that they don't bug me to death with emails etc if I decide it isn't the right path for him. 

The thing that I am most concerned about with homeschooling is the legal issues that go along with it.  I was given the rules for homeschooling for our school district and it seems simple enough.  I just have to send a letter to the Board of Education notifying them of my intentions to and send them a copy of my high school diploma.  It seems there isn't a standard curriculum I have to follow (and I wouldn't be able to even if there was one) but I do have to keep notes or a log of all the things I do work with him on.  But I have so many questions about the rules when it comes to the standardized testing etc considering if he were in public school his IEP would exclude him (as far as I know).  Ugh.  Too many things to consider at 10:20 pm when I have to get up for work in the morning so for now I will fill out my card and send it in and see what comes back to me in the mail.

XX

School: Day 5

Monday was a great day at school for Carson.  When we arrived, Patty met us in the hallway and grabbed Carson's hand and told him that they were going to do the stairs while I signed us in.  He hesitated for a minute but went with her without protest.  By the time I signed us in at the office and said hello to Jen (who was in the office cutting out apples) Patty and Carson were making their way down the adjacent staircase.  I'm wondering if they ran in the hallway upstairs...

 

Patty and Carson on the stairs.

 

After the stairs we went into the music room and found out that we were going to be alone for the day! The other little boy was out sick-and as much as I hate to admit it, I was really happy he wasn't there.  Carson does so much better alone plus then it's like private therapy for him.

 

They sang their apples song and then told us we were going out to the playground for an obstacle course.  We made our way outside and Carson 'ran' to the jungle gym.  We have taken him to the playground several times over the summer so it is a familiar place for him.  Patty started by having him climb the rock wall.  She guided his hands and feet where to go but expected him to do all of the work.  She climbed up behind him to make sure that he didn't fall.  She then went over to the double slide with him and they raced to the bottom.  Carson won, of course.

 

Amber joined us and we talked and watched as Jen and Patty worked with Carson walking along the edge of the playground.  It is built up about a foot taller than the ground and holds pea gravel inside.  They were using it as a balance beam.  Carson did good until he came upon a wooly worm and decided that he didn't want to step on it.  I've always thought that they were poisonous but the teachers all assured me they aren't and even play with them on the playground.  Cha Cha tells me they are.  I'm listening to Cha Cha. ;)

 

Patty then had Carson climbing the stairs up to the taller slides.  Carson slid down and then decided to try to scale the side where there is a wall straight up with cut-outs to place your hands and feet so Jen and Patty both began to spot him on his ascent.  I turned and realized that they were both running out of arm length and sprinted to the stairs made it to the landing just in time to hold Carson's hands and help steady him as he scrambled to the top.  It was so affirming for him.  We cheered and clapped as he slid down to the girls waiting below.

 

He then decided that it would be fun to turn around and climb up the slide-which of course is a big no-no per school rules but hey, this kid was on a roll.  Patty and Jen were happy to help out, supporting his feet at times and his bottom at others as he really dug in and used his core and his hands to climb this really steep slide.  It took a lot more out of Patty and Jen I think than Carson to be honest.  When he made it to the top he slid down and climbed up again.  I think he probably did this about 5 times total even after they took off his shoes and socks to get a better feel for gripping the slide and also for sensory in the gravel. 

 

After his last decent they moved on to an obstacle course which ended up being him running in the gravel and not really wanting to find the 'hidden' apples.  They decided that since the lesson plans for the day were totally shot already we might as well wing it the rest of the time that we had so back to the side wall for more 'balance beam'.

 

 

They walked him over to the swings and made a deal with him.  He would be able to swing but only after he strung beads (had to get fine motor in there somewhere) so they strapped him into the adapted swing and away they went.  Amber and I chatted about making homemade baby food and organic produce while we waited.

 

Carson wasn't happy when our time outside was over but it was time to go in for speech (and the kindergartners were coming out for recess soon).  When we got into Amber's room LaQuita was waiting for us with a book - "The Three Bears" but it was really hard for Carson to focus, I think mostly because his head was still outside on the playground.  With a lot of coaxing we were able to use hand-over-hand to sort items into three piles (large, medium, small) for each of the bears.  Again this was something that he wasn't in the least bit interested in doing but it was on LaQuita's itinerary for the day so it was getting done.

 

"Let's Go Swimming" was the song of the day again.  The only part that Carson really likes is when the little fish are sleeping on the rocks and he gets to lay down with me on the super dirty mats on the floor.  After the song we moved him to a table and I watched as LaQuita and Amber worked with him on matching pairs again: you get milk from ______? Cows.  You brush your teeth with _________? Toothbrush.  Some of the things seemed to be easy for him but then there were some others that were a lot harder for him to do and Amber would have to really push him to place the card on the correct spot.

 

The next thing they did was really fun because it joined reading and fine motor together.  LaQuita and Carson each had a recipe card for a certain type of cookie.  There were cards face-down on the table and they had plastic spoons with suction cups on the backs and they would have to slap down the spoon onto the cards and try to get all the ingredients they needed for their cookie recipe.

 
Carson got all of his 'ingredients' and was able to make his peanut butter cookies.  The funniest thing was how interested he was in the suction cup on the spoon.  I guess he'd never seen one before.  It was cute the way he would hold it and really study it.

Amber had a project for Carson when speech was done.  She had his name spelled out on a long black piece of paper and she wanted him to outline his name with Elmer's Glue.  He was actually really excited to do it too.  It was messy and he needed help squeezing the glue out of the bottle but he got it done.   Amber was really happy with him because it was the first craft project that she has planned for him that he was willing to do all by himself and not having us either coaxing or making him do it.  I thing next week he will put another piece of paper over the glued one and do a rubbing but we'll see.

By then school was officially over.  Jen had mentioned to me that she needed to talk to me about Carson's diet so Amber let Carson play on her computer while Jen and I figured out a list.  She had gone to a feeding seminar and was wondering if his diet was affected by his SPD. 

So I gave her a list of foods that he won't eat:
mac & cheese or anything with noodles in it (spaghetti etc)
tomatoes
mashed potatoes
nuts of any kind
cucumber
watermelon
raspberries
blueberries
chocolate

And a list of things he will eat:
tuna salad
hot dogs
chicken nuggets
pizza
sausage
bacon
pretzels
strawberries
pot roast
veggies in pot roast (potatoes, carrots, onions - all cooked but not mushy)
gold fish
Oreo cookies
cake

Of course, that's just the short list.  She said that she is thinking that most of these items have to do with sensory issues.  She is also wondering if maybe he can't smell because he seems to really like foods that are on the spicy side.  She said that could be a combination of the SPD and lack of smell or just the SPD.  I am going to make a longer list to give to her next week to see if there is a connection.

So it was almost a half an hour to make the list.  In that amount of time Carson somehow managed to reprogram Amber's computer and had it on a speaking tutorial that made the computer sound like it was about to self-destruct.  I hope they were able to fix it lol.  

After that it was time to go.  I hope that next week is as fun.

XX 

Carson's Birthday

Tuesday was Carson's 5th birthday.  I honestly can't tell you whether or not he understands birthdays- I know he doesn't understand Christmas and Santa or any of the other holidays- but on Monday night I asked him how old he was and he wrote 'four'. I then asked him how old he would be on Tuesday and he wrote 'five' which is pretty significant. 

We haven't had a birthday party for him since he was two.  That was when we found out about his SPD (sensory processing disorder) and for his sake have made birthdays fairly quiet and calm for him.  He can't handle being in a group of people, especially if it is noisy or there is a lot of movement.

For his birthday I got him a Magna-Doodle so if his iPad dies he still has something to communicate with. Mike got him a train set and his own alarm clock since he always plays with Baylee's and makes it go off at odd hours of the night-which is hilarious and annoying at the same time.

Sometimes it's hard to imagine how this little baby at two days old grew so fast into my boy who's almost up to my shoulders. 

I hope the next five years don't go as fast as these did.  We have definitely had our struggles, as I'm sure we will in the future too, but when I look back on it all I honestly don't really remember it unless I try to.

 

Happy Birthday Carson.

 

XX

Reality

Sometimes I wonder what we look like to the outside world.  I can honestly say that when I look at Carson I don't see the features that make him different.  When he was first born I was so worried about what other people would think about me and about him but I got over that very quickly.  His geneticist even offered to refer us to a plastic surgeon to change his ear shape.  I turned him down flat.  I told him that when Carson is older he can grow his hair long and become a rock star.  He told me that I was one of only a few parents that he had who would say that.  That's pretty sad. 

We live in a small country town and when I would take him to the grocery store the women at the checkout would always ask questions about him and his development etc.  Even now they recognize him and will comment on how big he is getting or if I'm just running in for a few things I will let him walk and they always notice if he's out of the cart.  I appreciate the fact that with the same women working there every time that we go there they talk to him and treat him as if he is just another kid hanging out with their mom. 

Outside of that, if I run to Target or to the mall or something I'm kinda in my own little world and don't really think about the fact that his ears and facial features are different or that he squeals and makes other noises instead of talking.  We laugh and play and have our own 'conversations'.  Sometimes I get the sympathy look from adults, usually mothers.  Sometimes I will get a cashier who will ask how old he is (I'm assuming they think he is younger) and when I say almost 5 they balk.  Sometimes they will try to cover their response with "so his birthday knocked him out from starting school this year?"  I just say yep, pay and leave. 

The other day I was at Justice looking at clothes with Baylee (a total nightmare store with a child in a stroller I must add) and Carson was squealing and trying to pull all of the clothes off of the racks.  I was trying to maneuver the best I could around all of the racks of clothes and trying to keep him from making a huge mess when a group of about 6 teenage girls came in acting all snooty like most teenage girls do.  One of them gave Carson a look that made me want to smack her.  I seriously had to check myself because I came so close to at least confronting the way she was looking at him.  To me, he's just a little boy but to her he seemed to be an annoyance.  It's sad that kids act that way.  I always hope that maybe parents nowadays would be more open to their kids playing with children with special needs or at least acknowledging that they are there. 

I saw on the news the other day about a woman with an autistic son in Canada who received a letter from someone in their neighborhood telling her that her son should be euthanized.  My heart broke for her.  How can someone be so heartless?  Carson may be a LOT of work.  He may never talk, use a fork or be out of diapers but he is one of the few things in my life that is pure.  He doesn't know how to lie or cheat.  The innocence that he emanates is so amazing and inspiring.  He looks at the world in a completely different way than most people do.  People now are so rush rush rush and he is the total opposite.  Today I watched him as he stood in front of the stove for at least 5 minutes just watching the digital clock on the back splash.  Every time a minute passed he celebrated the new number staring back at him by squealing and running to me and pulling me over to show me.  He would then start again, so happy to stand there and wait for the next one to come.  How adorable is that?  He makes me remember to enjoy the 'now' because I am guilty of rushing through life just like everyone else.

I want to be a voice for Carson.  I want others to know that having a child with special needs (however great they may be) is NOT the end of the world.  If anything, it opens your eyes to another side of it.  Granted there are days that I wish that I could sleep in my own bed or at least have him not sleeping practically on top of me.  Days that I would almost give anything to not have to watch him like a hawk because he may put something in his mouth, or trip and fall or just lose his balance.  Days that I wish that he could just say what he wants or needs instead of the frustration that goes along with not have the ability. 

But the reality is this: Carson is my little guy that gets to go through life with me.  I get to cut up his food and feed it to him, change his diapers, put on his clothes, bathe him, teach him and most of all nurture him.  I accepted that fact long ago and I'm okay with it.  Mike said when he's 20 and still sleeping in bed with us that we'll just get a California King and it's all good.  That's why I love that man, he gets it too.

School: Day 4

Monday was another day for Carson to go to school. 

I was expecting him to fall asleep in the car on the way home to let the dogs out since he decided to grace me with his presence at 5:30 that morning but surprisingly he actually stayed awake.  We got home, let the dogs out, changed our clothes and grabbed a quick drink before heading up to school.

My mom and I have come to the conclusion that Carson is now going through the 'terrible twos'.  I know that he is almost 5 but since we have always classified him as cognitively half of his age it would make sense.  He has been a terror both at home and now at my mom's house during the day.  He is into everything- ripping pages out of books, pinching anything that pisses him off, screaming, climbing on every piece of furniture we have and not even giving a thought to the fact that he could fall and break his neck.  Yesterday he ripped part of our refrigerator door off and today he was ripping leaves off of my mother's 100-year-old California Cactus plant that has been passed down through the generations!  Needless to say she is getting to a point where she can't wait until I am home full-time because she needs a break. 

On the way I to school I told Carson that Amber was back at school today and I expected him to be nice to everyone today.  I explained to him that screaming, pinching and pulling hair were not acceptable things to do to other people and if he did it he was going to lose his iPad for the rest of the night.  Although I have to be honest, I don't know it I would've been able to follow through with that threat considering the fact that he is worse without it and since he has been using it more and more to communicate that would be extremely mean for me to do, but hey, he doesn't know that and frankly I wasn't even sure if he was comprehending what I was saying to him anyway.

We pulled up to the school and Patty was waiting for us when we got to the front door.  While I signed us in for today she took him to the stairs.  He didn't want to lose sight of me and ran right back to me when she let go of his hand for a minute. I took him back to Patty and then hopped up the first flight of stairs and then turned around to cheer him as he made his way to me.  With a huge smile plastered on his face he climbed each step, one foot on each stair, until he reached me.  Patty then told me to continue up so up the next flight I went.  He happily followed.  We made our way down the little hallway and headed to the flight of stairs at the other end of the hall.  This set was actually 3 flights instead of two.  I can't really describe the way Patty was holding him-she had one of his hands in hers and had them pushed up against his hip on one side.  With her free hand she helped guide Carson's opposite leg onto the correct step, the whole time walking backwards.  I had never seen anything like this and I have to tell you-it worked.  She guided him down two of the flights and then left him at the top of the 3rd.  I stood right in front of him and cheered him on as he held onto the rail and went down the four steps on his own! Granted, he would place both feet on each step which isn't really what his IEP says but it's still a MAJOR improvement.  Even teachers who passed him in the hallway were cheering for him and telling him what a good job he was doing.

After the stairs we went into the music room.  The other little boy wasn't there yet so they started without him.  The song for the day (now that it's a new month) is "Apples are Falling" to the tune of "Are You Sleeping." 

Apples are falling

Apples are falling

from the tree

from the tree

Pick up all the apples 

Pick up all the apples

1-2-3

1-2-3

It starts out with legs together and arms and hands spread wide above your head.  As the apples are 'falling' you bend over and place your hands on the floor (if you're 4 and very flexible or short ;) and then stand back up and stretch big to be a tree.  You do this until the chorus, "pick up all the apples" which you then cross reach one arm to the opposite foot and vise versa.  Good stretching and cross-body action going on right there.  This takes Patty showing Carson what to do by mirroring and Jen actually making him do it.  This is one we did last year too so he didn't do too bad with the first part of touching his toes but the cross body is nearly impossible for him to do.

After the song Jen sat with Carson and used two colored (washable) markers to draw circles and letters.  He was happy with what he was doing until she made a cross and of course he spelled "RAIN" again to make "Train."  It's cute because the kid never misses an opportunity to spell it.  After writing letters they had him cut through card stock- which is very thick paper, they (jokingly) said they're working towards carpet.

This entire time Carson was sitting with Jen and Patty doing what was asked of him.  I am now beginning to wonder if the other little boy in the class is maybe Carson's problem.  Not necessarily a nuisance but just enough with the noise level or some other factor that makes it hard for him to focus. 

After fine motor it was time for his obstacle course.  This time is was a balance beam (foam on the floor), crawling through a tunnel, rocking on a balance board, jumping off of a step stool, rolling in a cylinder, throwing a ball at stacked 'cans' and then rolling on a ball picking up cones to stack using one hand to hold himself up and the other to stack, then rotating hands.. (pictured below).

This part is his favorite.  He loves to be upside down!

It was then time to cool down, they played their soothing all done song and turned off the lights while rolling the ball above on Carson's back as he laid on his stomach on the carpet.

It was then time for speech (yay!!).

We went to Amber's room with LaQuita and sat down for a story - one of my favorites, "Pete the Cat- I Love My White Shoes."  This book held Carson's attention pretty well.  I'm sure the singing had something to do with it but it was fun.  Afterwards LaQuita had a paper with places to put little tiles with Velcro and went through with the boys the sequence of what color Pete's shoes turned through the book and what he stepped in to get them those colors.  Carson got the last ones (white, water) without any help.

After the story we listened to "Let's Go Swimming" by Laurie Berkner and sang along reenacting what the fish were doing in the song.  Luckily this is one we again knew from last year and while Carson didn't want to 'swim' he was very happy to hold onto my neck while I was on my knees and jump over and over and over again unless they were taking a nap then he would pull me down to the mat to 'sleep' with him.

When the song was over Carson and the other little boy were taken to the table where LaQuita had a sort of BINGO game where Carson had to match pictures together in order to get a chance to draw a picture to match his BINGO card.  The game lingered for quite a while and when it was time to go Carson was able to get a hold of his iPad again.  He happily ran over to the little 'house' they have set up in the corner of Amber's room and turned on an App called, "Endless Alphabet."  It is an app that has words like opera, multiply and experiment.  Little monsters (cute ones) will then act out the definition of the word while a woman's voice will also explain the definition.  As Carson is showing LaQuita his iPad, the other little boy comes over and is complaining that he wants to play with the iPad too.  As he is looking over Carson's shoulder trying to get closer, Carson finds the most fitting word and shows it to LaQuita.  His word? NOSEY.  Too funny.  Amber and I had a good laugh at that one.

 

At the end of the day I think overall we had a great day at school.  I found out from Amber that they have changed the rules about kindergarten and that he will have to start next year.  I asked if I was able to red-shirt Carson if he would be eligible for this program again next year and she said I will have to ask the preschool coordinator about it.  We have an IEP meeting on November 4th so that is something that I will have to bring up then.  She did tell me that once I'm off work I am more than welcome to bring Carson for snack time and recess and still be considered itinerant so he can hopefully learn to tolerate other people and still be able to get his services.  One more thing to think about...

 

XX