A few days away

(Note: I typed this up two weeks ago, so I am late in getting it posted.  My next blog post you will understand why.)

So when I last wrote I was mad at myself for not taking time to write and give myself the relief I need.  My blog is not only funny stories of my families’ day-to-day life, or informational for those who want to learn about Fragile X syndrome, but it is a huge stress release for me.  It is a lot like a journal where I can be myself and not care if anyone is judging me.  Hell…does anyone even read this?   LOL!

Any hew… when I last wrote I mentioned we were back on the path of finding a new house to call home.  I am so glad we walked away from the money pit house because not only did we save ourselves from falling into major debt perhaps keeping the money pit from sinking, but it gave us the opportunity to find something even better.   You know…a house that didn’t need major updates in every room, a house that has hardwood floors, a house with a yard that doesn’t slope, a house that doesn’t have rodents living in the attic, a house that really doesn’t need much done but maybe a few coats of paint.   We could see it in our minds…even amidst thinking we had already stumbled across it and finding so many disappointing problems. And then there she was...a bigger, gorgeous, two story home.  Not only did we fall in love with it, but we put an offer on it, got a contract, and close on it at the end of the week.  There are some rooms that need to be painted, we needed a few appliances, some carpet needs to be replaced, oh…and it needs a fence, but it is our dream house.  It has everything we wanted and more.  Sara gets her main floor laundry and walk in closet (which is almost as big as current bedroom).  Jackson gets a new bedroom and even his own therapy/play area.  I get a huge deck and a man cave.  It is perfect and I can hardly wait for Friday to get here.  The last few weeks have been busy with packing, selecting paint colors, and flooring.  The next few weeks will be more packing, cleaning the new house, and painting walls.  The basement is finished in wall to wall 1975 grayish wood paneling.  I promise to post before and after pictures of it all.

New house aside… Jackson has been on two different medicines since the conference.  The divided dose of Clonidine didn’t seem to be working well, when it wore off Jackson was bouncing off the walls.  EBK suggested trying Tenex again, which I was really leery because the last time it did not go too well.  Similar result on take 2, Jackson was not himself at all and the head banging got really bad.  School was seeing an increase in hair pulling and we were seeing that at home too.  Jackson also smashed one of those long dorm wall mirrors with his head at school.  Luckily it did not cut him or hurt any of the other kids; none of the pieces of mirror fell to the ground they stayed attached to the cardboard backing.  So for the last two weeks he has been on a Clonidine patch.  I don’t know if it is too early to tell, but Jackson is definitely himself.  Laughing at farts and wanting to eat all the time.  The head banging isn’t completely gone, but not a frequent problem and is used in an “I am not getting my way” function.  The hair pulling… again something that Is not completely gone, but is being used when trying to get out of something.  

Medicine aside, Jackson is doing really well in speech.  Every day he is making more sounds.  Like most typical 1 and half year olds he reverts to pointing and grunting, when in doubt reverts to finger gagging, but he is working really hard with using his words.  Jackson’s speech therapist is trying hard to help us get a grant proloqo2go for our iPad.  We are hoping to get a grant for it because it is really expensive.  If Jackson points and grunts, you can ask him to use his words and he tries really hard to say it and sign at the same time.  I call that major progress.

Since I brought up the iPad…Jackson’s favorite thing to do on the iPad is watching YouTube videos of people mowing their yards or vacuuming their houses.  I have actually learned a lot about cutting the grass and what our next vacuum purchase should be.   It is also very scary that people let their 2 and 3 years olds cut grass with a lawn mower.  WTF people?  Then there are the three videos of songs Sara and I are getting to know by heart which are “We are young” by fun. (the actual video by the group), “Big Green Tractor” by Jason Aldean (a video of a little boy driving around a JohnDeer), and my personal favorite “Call me maybe” by Carly Rae Jespen (a video dubbed by Missy Franklin and the USA Olympic swim team).  I always had said if my kid loves the big purple dinosaur I will shoot myself, so I will settle for these pop songs for now.  LOL!

Hello blog, remember me…

I want to write on my blog as much as possible, believe me I do.  I wish I could find the time, but it is so difficult. I don’t know how the blogs I follow do it, some of which have more than one child with Fragile X.  These moms are truly amazing and I feel like I truly know them and their families, even though we have never met. I want to thank all the friends and family who follow and read my blog; I didn't realize how many people enjoy our family stories.

So much as happened since I last wrote I don’t even know where to start.  We had the 6^th annual Fragile, Not Broken Walk for Knowledge in June.  Even though the walk fell on the same weekend as the Komen Race for a Cure, there was still a big turnout.  So many of our friends and family came out with us and walked in support of Jackson.  I feel like I can’t thank those who participated and donated enough, it means so much to me.  I feel bad that I haven’t had a chance to individually thank everyone.  Jackson was all smiles all day, helps that his nephews were there.  I hope that our team grows every year.

Team Jackson 2012

Sara and I have been trying to find a house since April in the Parkway West district.  We found a house that we loved spite the fact it needed a lot of updates and got an accepted contract, but after the inspection revealed a multitude of problems we had to walk away.  Honestly I am not sure which was the last straw as the list grew, maybe it was the massive leaking basement wall after a slight rainfall or the mice family in the attic, but our inspector found 42 items that needed to be repaired.  Some of those items included more than one item, like the leaking faucets in all 3 bathrooms.  The good news is we didn’t buy the money pit; the bad news is we really wanted the house.  Two weeks…  We had called Parkway West when had our initial accepted contract to get the balling rolling before we even moved.  I think the icing on the cake of heartbreak for the horrible inspection was the call we got from Parkway West about adding services to Jackson’s current IEP.   They were really shocked at the limited services he was receiving at Northwest, they were specifically floored that Jackson was not receiving any speech at all.  Sara told them we were paying privately, to which Parkway responded that we shouldn’t have to pay privately, the school should be providing that.  Even though the house fell through it only reassured us that making the move is in Jackson’s best interest.  So the day we walked away from the contract on the money pit house, we started looking again.  It is so exhausting going from work to looking at multiple houses in one night.  We are fortunate to be able to drop Jackson off at Sara’s moms on the way and pick him up after.  Now if we can just find a house we both like again…we will be set. 

Catching a wave

Having fun in the ocean

House hunting set aside we traveled as a family to Miami for the International Fragile X Conference.  It was our first conference since Jackson’s diagnosis.  We also tried to get a little bit of family vacation while we were there by visiting a beach.  The hardest part of the trip for all of us was the plane ride there and back.  Jackson doesn’t sit still for a long period of time ever, so to have to sit still for 3 hour flights just forget about it.  We tried medicine on the way there, then upping the dosage on the way back.  We had his favorite snacks and activities, but nothing seemed to calm him.  We had a lot of hair pulling, a lot of kicking the seat in front, and a lot slamming into the back of his seat.  Aside from that, the trip was great.   I was warned about Miami’s humid weather, but coming from St. Louis with 104 temps at 90% humidity I didn’t even notice.  We stayed at the hotel where the conference was held, it was walking distance from a mall with a ton of eateries.  We got some great pictures at the Hard Rock Cafe, ate at Bubba Gump Shrimp, and the hotel food itself was amazing.  Jackson was a flirt everywhere we went and his favorite spot was the hotel pool.

Ham'n it for the camera

The conference itself was amazing. They offered childcare which was great because there were so many sessions to attend.  Sara and I divided and conquered, trying to go to as many sessions as we could.  It is overwhelming the amount of information they pack into these sessions.  I went to a clinical session where I was so lost from start to finish.  Sara and I both attended Hand-On Hyperarousal Workshop that was led by Mouse and Tracy.  It was by far my favorite session because we got to experience how it feels to be hyperaroused and we can teach others what it feels like by making them participate in this small little exercise.  I thought I knew how hard it is for my little man to function in this world, but I was completely blown away and to be honest had no real clue.  The common word used in the majority of the sessions I attended was “Hyperarousal”.  Even though the information at times felt overwhelming, it was also good to be reassured that we are on the right path in helping Jackson succeed.  Since Jackson is still young we did miss the big luncheon and dinner banquet which would have given us more opportunity to talk to other families, but I am glad we chose to have some family time too.  Sara did get to go to the Mission to Lars viewing while I put Jackson to bed, I was a little bummed that I didn’t get to see that.  We were able to meet up with Sara’s grandpa and grandma for lunch.  The visit seemed too short, but they were able to see Jackson.  Sara’s grandma brought Jackson a little goodie bag with yummy treats, cute sunglasses, and bubbles.  Jackson literally bounced the entire time they visited.  I can’t remember if Jackson was walking yet the last time they were able to see him. 

Since we have been home from Miami we have been busy house hunting.  Saturday we had a showing of our house and went to the Fragile X BBQ at the Howards.  They are so nice to open their home to everyone and the food spread is always amazing.  Even though Jackson takes up the bulk of our time at events, we find time to take turns and mingle with the other parents.  It is nice to be around friends who are or have been in shoes similar to ours.  Plus there is a pool and Jackson loves pool time.  Jackson pulled on one of the little girls’ hair in the pool and she handled it so well.  I also have a BBF every time I see her.  She loves to ask many questions and has such a great imagination, I really enjoy our talks.  She even lost a tooth which was super exciting; I hope the tooth fairy visited her.   We wish could have stayed longer and visited more, but we didn’t want to push Jackson too far.  I think he may have had too much pool water because on the way home he made himself sick.  Jackson was getting so much better at not sticking his fingers down this throat, but this time we couldn’t distract him away from it at all.  Sara believes he had an upset stomach.  When we got home I pulled the hose around to clean him and his car seat off, he of course loved it.  Then I took him upstairs for a bath while Sara finished cleaning the car seat.  After his bath, we switched and I finished cleaning out the car.  Did I mention that after he got sick he starting clapping and smearing his stomach contents on the window?  I think most parents would be screaming at the top of their lungs over this, but all I could do is laugh at this point.  I will admit I was not laughing when he was making himself sick on the way home, mostly because it makes me want to get sick.   The finger thing has always got to me.  I sure do miss Billy Mays, but Oxi-clean is by far a life saver for times like this.   Next year we will be living much closer to everyone so we will be able to stay longer and the drive home won’t be as far, less time for incidents like this. 

Yesterday we stayed home.  There were a few open houses we thought about seeing, but I didn’t feel like leaving the house for anything.  We took advantage of the no tax weekend and bought a new MAC because ours is on its last leg.   Sara also bought a wireless printer so I got to play tech geek in the afternoon getting it all setup.   We took a much needed family nap and after dinner went for snow cones.  I should feel rested today, but I am not quite there yet.  I think once we are moved into our new home I will be able to get caught up.  Come on new home.. Wherefore art though…  

So Busy

We have been so busy the last few weeks and weekends that I have not had any time to share our exciting adventures.  So I will try to be brief to get everyone caught up with our family.  LOL!

Over the memorial holiday we traveled to Chicago to see Jackson’s fragile X doctor, Dr. Elizabeth Berry-Kravis.  We left on Monday for the Tuesday appointment.  We only stayed one night and drove back, we are brave.  Jackson did really well; it took us around 6 ½ hours there and about the same back. I think trip took more of a toll on us.  The appointment went really well.  I entertained Jackson while Sara asked as many questions as one could ask.  Dr. Kravis is such an amazing woman; I am not sure how she fits all that information in her brain.  She was very impressed with Jackson’s progress.  Last year when we visited Jackson only had about 3 signs for communication, now he has communication oh plenty.  The room we were in had a computer that Jackson was obsessed with.  Dr. Kravis said that all her FX patients love the computer and felt he couldn’t break it.  He somehow changed the video to display sideways using nothing but keystrokes.  I might be a computer geek, but this computers system settings were locked down, so without knowing what in what sequence the keys he pushed I could not get the display back to normal before our appointment was over.   Dr. Kravis wants to try Jackson on a medicine during the day to help with hyper activity and focus.  She also was impressed with the amount of energy he had during the time we were in that room.  Sara is going to brave the medication next week while the two of them are both home for two weeks.

Watch out Bill Gates!

The following weekend we went to a “mommies like us” outing and we had an open house.  It was nice to meet other families like ours with two mommies.  It was hard for us to get to know the mommies as Jackson is a busy toddler.  I brought my camera to take pictures of the other families, but didn't a get a chance.  After lunch we dropped Jackson off for a nap at grandmas, and then Sara and I did a 24 hours blitz deep cleaning to our house making it all sparkly for the whopping two couples who came and took a look see.  The only feedback we got from the agent who was at our house, which by the way is not our actual agent, was one couple really liked it and was going to speak with their agent; the other couple was concerned about the roots for the tree in the front yard.  We have not heard from our actual agent since our open house, so my guess is she did not follow up with the agent of the couple that said they liked it.  So in the 3 months our house has been on the market we have only had 3 lookers.  Either way I am still very positive that someone will fall in love with our house and put an offer on it soon.

Every weekend Sara and I are going to as many open houses as we can.  We switched buyers’ agents recently and our new agent has been very helpful.  We have gone to a few houses outside of open houses and taken a 2^nd look at two houses we are really interested in.  Both houses our listed outside our budget, one of which has come down in price, just not down enough…  Any spare time we have at home we have been online looking at houses.  Pretty much that is where our spare time has gone too.

Sara started working at Howard Park Center a few weeks ago.  Jackson is also attending school there over the summer.  She loves her job and Jackson is doing well at school.  Last week he had a few hair pulling incidents, we are really trying to find the best way to manage this.  We asked Dr. Kravis about it when were in Chicago and she said a behavior analyst would be able to advise us best.  This is the one behavior that can’t be ignored as it harms others.  We keep trying multiple avenues, I hope we find a working one soon.

This past weekend we walked for one of Sara’s high school classmate’s daughter at the “Seize the Day Walk”.  The event was in Kirkwood at the train station.  Jackson got to see a train go by, which was probably his favorite part of the day.  They had a lot of silent auction items available, a bubble bus, food, and beverages.   The walk started early, we were there just before 7 AM.  We finished the walk just after 8 AM and it was already very hot.  Jackson lasted till about 8:30 AM before he was ready to go.  

Watching the train

That is not Thomas Na-na!

We stopped at his favorite store on the way home, Target.  We got home in time for lunch and a nap, and we all took part in the nap.  It has become a weekend family tradition, if Jackson naps, we all nap.  After then nap, Jackson and I vacuumed that house.  We are using this as a reward for after naptime.  I was able to a snapshot of him helping. 

 My little helper

Sara and I had a date night for the evening.  We went to Elephant Bar in West County.  I have an onion allergy so it was difficult for me to find a menu item, we didn’t realize that before booking the reservations.  We ordered the lettuce wraps for an appetizer, but it had red, white, and green onion throughout.  Our waiter was nowhere to be found after the plate was dropped off, so I told Sara to go ahead and enjoy them while I enjoyed my yummy adult beverage.  After dinner, we drove by a house we had on our list to go see, but the backyard was nothing but a huge slope, no level ground at all.  We drove around a little bit more in the area and then stopped at Blockbuster.  Since the evening was falling a little short we grabbed a comedy, Tower Heist.  The movie was hilarious, just what we both needed.

Sunday we both spent time with our dads.  My siblings, sister-in-law, and I took my dad to 66 Roadhouse for brunch.  Because we booked the reservations late, we had an early bunch, but it did not disappoint.  There was plenty of great food.  My sister-in-law is related to the owners, but I didn’t know that before deciding on that location, small world. That did not get us any sort of discounts though.  Sara and Jackson got home shortly after I did.  Jackson was really tired, so we all took a nap before lunch.  We slept 2 ½ hours, wow I guess we all needed that.  Sara vacuumed after lunch while I packed up swimming gear.  I took Jackson over to my parents for a swim so Sara could do some cleaning.  She suggested it before you go thinking I am a bad guy.  Jackson and I had a blast at the pool.  We bought him water wings with a chest belt and within a few minutes he was swimming on his own.  He needs some work on kicking those feet, but by the time we getting to ready to get out of the pool he was starting to get it.  My dad grilled some shrimp and steak.  I ate some before we headed home and it was so yummy, Jackson didn’t really want any part of it and I was still full from our late lunch.  Sara cooked some baked spaghetti and he was ready to eat as soon as we got home. 

Mr. Independent!

Kicking his legs

This coming week we have a lot going on.  Sara is going to a support group on Tuesday night.  We might try to see a few houses.  We also are switching agents, so we have new contracts to sign.  Friday night I have softball with my ladies. Saturday is the 6^th Annual Fragile, Not Broken Walk for Knowledge.  If you haven’t already, it is not too late to register to walk with Team Jackson.   Our team is going to be wearing Cardinals gear.  Go CARDS!  It is a fun family event with games, pony rides, and raffles.  Come visit our team page for more details and read our story: TEAM JACKSON 

When Fragile X is hard

I always try to be positive when talking to others about Fragile X syndrome.  When I share my stories I try to make them funny or put a comical spin on them.  Sometimes though it can be really hard to see things positively or comical.  Jackson has some behaviors that can hurt or drive you completely insane, sometimes both at the same time.  It is really hard sometimes to keep calm and not have a negative reaction.

 

Jackson is a master at pulling hair and he can grab that one spot on your head that makes you drop to your knees.  Sometimes it takes another person to help free his hands because he grabs you with both of them.  If you ask him nicely to stop, he pulls harder.  He also might throw himself to the ground while latched on, or put his feet into you and pushes outward against your body.  He has also grabbed my hair and pulled his head into mine like an extreme head butt.  Sometimes you can see it coming because perhaps he isn’t getting his way, or if you get too close it makes him anxious.  He doesn’t like people to be too close.  Other times the hair pulling seems to come from nowhere.  Maybe he was hurt and you are comforting him, or you are playing with him and he is laughing and having a good time.  When you are public people just stare at you as though they have never seen a child pull hair before.  I try not to worry about those people who appear to be judging us.  It makes you just want to cry either because he pulled too hard, or because you are so tired of having to pull him off.  We have tried to track what triggers him to revert to hair pulling, but sometimes it is very impulsive with no rhyme or reason.  There are days that the hair pulling drives you completely insane making it hard to not yell at him or the person who might be helping you out.  We are at a loss as what to do to keep him from doing it.  The answer is not pulling his hair back for those who are thinking that, although I will admit I have tried that and it did not work.  We will continue to try the suggestions our providers continue to give us.

If Jackson isn’t getting his way he reverts to head banging. This is something he has done since he was around a year and half.  He sometimes sports a bruise on the middle of his forehead.  Our last trip an ER a nurse asked us if someone hits him, she quickly followed that statement with saying that is something they ask everyone.  We have been to the ER a few times in last few years and that is the first time anyone has ever asked that, so it took me a little off guard.  Recently though Jackson has been swatting at or hitting, mostly at us.  This usually happens if you try to redirect the head banging or hair pulling. The swatting is newer and it isn’t that frequent, but I worry about it happening at school.   School says he doesn’t bang his head or swat at anyone, so I guess he saves that all up for us.

Then there are some of the things that drive me insane.  Jackson has the ability to clear things off everything… shelves, tables, and counter tops are a few examples.  Because of this unique ability, if you visit our house you will notice everything is up very high or you just don’t see much in our house.  We do have things, I promise…they are just all put away.  I have had friends tell me not to worry that all kids are like that, but I really don’t think they understand.  When I say clear everything, I mean everything.  If it is within reach it will be swiped off in less than .2 of a second.  We give people heads up of this ability, especially when we go out to eat, but by the time food is ready to come to the table and all seems to be lost our server.  Please all waitresses and waiters please don’t try to server our food over our sons head or stick anything right in front of him.  We had a waitress deliver hot soup right across Jackson and try to hand it to Sara when all she had to do is walk over to Sara’s side of the table and give it straight to her.  Jackson swiped the bowl of soup and it burned his hand, but of course we are the ones left apologizing.  In our house all of Jackson’s books are put away in a cabinet, his toys in bins.  Our bathroom sink only has hand soap on the counter.  Our decorative shelf is empty unless we have a house showing, we even had to remove the individual selves in the middle because he figured out how to lift them up and drop them. 

Jackson also likes to knock things over like chairs, lamps, trash cans, and plants.  You can redirect him away from the tipping object and send him to his preferred activities, but he will go right back to it.  Jackson is an awesome bait and switcher.  We have to put our dining room chairs away until company comes to visit.   The kitchen is locked off with baby gates.  Pillows are not to be on couch, they are to be thrown over banister and down the stairs along with TV remotes, cell phones, or anything that he gets his hands on.  Every door in our house is closed and he is close to figuring out how to open them.  Not looking forward to that day.  Seriously it is super extreme, my son is the Tasmanian Devil and he does these activities with a giggle and a smile.  I grew up watching my siblings and toddlers in my neighborhood; and I don’t recall it ever being this extreme.   So when others say to me,  “Oh he is just a boy or he is just a 3 year old, all 3 year olds are like this..”  I laugh and think to myself, “I dare you to invite us over…”   Most 3 year olds I have encountered in my lifetime even those who have behavior quirks can be explained to why this is not an acceptable behavior and once they experience consequence like a timeout they most of the time they learn not to do that behavior again.  I wish a timeout would work in my house.  Please don’t tell me to spank or discipline my child.  Most of the time the behavior is attention seeking, so even if you give the child a negative response they are still getting what they want which is attention in the first place.  I have gone to a few behavior workshops and a parent training program on autism and autistic like behaviors, I personally think all parents should attend such programs if possible.  If you are going to give me input on how you would handle these behaviors then come take a class or attend a workshop with us.   Now I am sounding like I am ranting and venting, which is not my intention.  What I am trying to say is sometimes it can be so hard.

   

Sara and I attended a Fragile X behavior workshop last year and learned so much from this.  We both felt overwhelmed with information when we left, which is a good thing.  One thing that stuck out is that it is easier to change the environment than it is to change the behavior; however this is easy to forget when the behavior is present. The shelf clearing I mention above, Jackson is not the first fragile x kid with that talent.  We know that fragile X syndrome can exhibit many challenging behaviors, but we really worry about the aggressive behaviors.  The hardest part is figuring out what triggers the behavior because there are so many factors that can cause these behaviors.  Jackson seeks a lot of sensory integration and we give him tons of throughout the day.  Jackson has an indoor swing, a brush for his hands and arms to be tickled (or our hands work as good tickling devices), he also likes to get squeezes and rolled on (I am a human steam roller), he has an indoor trampoline, his chewy tubes are amazing, and he has a rocking horse.  All these things help with all his sensory needs.  I am really looking forward to our trip to Chicago to visit Jackson’s FX doctor over the Memorial Day weekend. We have so much we want to ask, especially now with Jackson’s seizures.  We will also have time to talk about his behaviors and medicines.  I am also looking forward to going to Miami for the FX conference in July.  We are going as a family and there are so many sessions that we can attend.  I am so grateful for these wonderful opportunities to learn and discuss things that can help my son succeed.  No one said parenthood was easy...

I’ve caught the Holiday Spirit bug

I haven’t been giving myself much time to blog these days and it has almost been a month since my last post. To be honest, I have been in funk.  The season change from Fall to Winter gets me every year.  It is dark when I leave for work and it is dark when I get home from work.  Usually when I sit in front of the computer to write a blog it comes out easily, but the last few times I ended up just staring at a blank Word document with the flashing cursor blinking at me.  Feeling uninspired even though my son gives me plenty to be inspired about each and every day.  I have just felt..  Meh..  but all that has changed after this past weekend..

First before I get to what has inspired me to get back to my blog….I want to rewind back to Thanksgiving.  The past few years we have been trying to find a happy medium for the Holidays by trying to figure out the best way to celebrate with both of our families.  Sara and I are both very fortunate that both our families live within less than 20 minutes.  The past few years for Thanksgiving we have either split the day between the two different families, celebrated at one families house on Turkey day and then the other families the next day, and we have also given hosting a try by having both families come to our house and enjoy having everyone together.  Sadly none of these three things have worked out so well and have been very stressful on the both of us.  This year we went with a different approach all together, we hosted just dessert. 

Thanksgiving Dinner

We cooked a meal for just the three of us which consisted of a Smoked Cajun Maple glazed turkey breast, sautéed green beans, mashed potatoes and gravy, roasted squash with apples and cranberries, and croissants.  If you mouth isn’t watering yet…here is a picture to get those salivary glands a pumping.  After we enjoyed our meal, we had time to relax before both our families showed up with many different desserts to share.  Sara’s dad made homemade apple pie, my mom made chocolate cake with cherries and whipped cream on top, my sister made pumpkin cheesecake bars, my sister-in-law made chocolate cherry cake with chocolate icing, and we supplied a pumpkin pie and my homemade oatmeal cookies. It was a wonderful dessert table to say the least.  Sara and I took turns with entertaining Jackson.  He was super excited to see his cousins Owen and Andrew. Jackson also loves to see his GG, my grandma.  Our house isn’t that big, but we managed to get everyone in and hopefully comfortable.  My brother Alex was not able to attend because he works for Wal-Mart and had to prepare for Black Friday. Jackson had a tendency of getting too close to Owen from time to time and he had a few hair pulling incidents. Other than that we had a wonderful evening and for the amount of people in our house Jackson did very well. It was a wonderful day all around.  

Jackson's new recliner

We did some black Friday shopping at some furniture stores.  Sara finally broke down and said I could have a recliner.   Oddly Jackson does well in all stores accept furniture stores.  I haven’t figured out if that is due to the lighting, the annoying sales people, or the fact that these stores are not stroller friendly.  I am sure he picks up on my anxiety in these stores as well.  After a few stops, we opted to wait until we could discuss what we truly wanted and we were home by lunch time.  Jackson fought taking a nap and got into his restless period.  So Sara called her mom to see if she would watch him for a little bit while we gave a few more furniture stores a try.  All I wanted in my recliner was brown, easy spill maintenance (fake leather or microfiber), rocking, and soft hug-me comfort.  Sara wanted a chaise rocker. We went to Ashley first, then Weekends Only.  I really hate going into Weekends Only, those sales people are like evil vultures.  Last time we were their this guy stalked us, we told him we were just looking, and when we were ready to buy something he wasn’t any where in sight so we found someone who was available and not creepy.  This creepy guy’s sonar went off from across the showroom floor as the sales woman was filling out our paperwork he came from out of nowhere and started yelling at her about stealing his customer right in front of us.  We made mention of how inappropriate and unprofessional he was from the beginning as we were filling out paper work. He continued to get irate in front of his manager.  So I get super nervous every time I go in that store.   Luckily this time it was crowded and the customer to sales associate ratio was 5 customers to 1 sales person.  The selection of recliners was 4 times that of Ashley.   Then there it was… a brown, microfiber, hugging, rocking, chaise recliner.  It was love at first sit.  Sara gave it a try, it was heavenly.  It took awhile, but we were able to find a sales associate and it was meant to be, only one left in the warehouse besides the floor model.  A quick call to Sara’s dad to see if we could borrow the truck and it was purchased, picked up, and hauled up the stairs in our home.  I was so proud of Sara for helping me get it nestled into it’s spot.  Not only do I love the chair, but Jackson loves it too.  He watches his Mickey Mouse Club House while rocking back in forth for 30 minutes or more.  It has been a wonderful addition to the family.  The rest of the weekend we were all so exhausted.  Jackson is finally over the day light savings hump and sleeping his normal schedule.  We even got a family nap in on Sunday. 

Jackson enjoying the stage

This past week has been full of events.  Tuesday night we went to have milk and cookies with Santa hosted by TouchPoint.  We went last year shortly following Jackson’s diagnosis of PDD-NOS. The event has face painting, a comic magician, a balloon animal/character artist, Christmas carolers, plenty of milk and cookies, and Santa.  Last year we had melt down issues when waiting in line for Santa, but we managed to get Jackson on his lap.  This year we knew it would be difficult.  We brought the portable DVD player loaded with Mickey Mouse Club House and plenty of Jackson’s favorite treats.  We were early this year hoping to get a good jump in line, only this year as we got in line they changed it and decided to call the children up by table.  So we went from 4^th in line, to back at our table waiting patiently.  The line kept getting longer and they stopped calling tables at some point. There was little boy at our table that was having some major sensory issues and his mom was doing such an amazing job calming him.  We asked him if he wanted to share the Mickey Mouse Club House movie, but he wasn’t very interested in that.  He was much older than Jackson, so maybe not his cup of tea.  His mom sat with him like we did with Jackson as his dad took his sisters to the line.  I thought I would take Jackson over to the open area and let him run, but he was obsessed with the stage that was set up that had pre-decorated theme Christmas trees for the Autism fundraiser which was the next day.  I let him go up and down the stairs, but feared him bolting to one the trees and knocking it over. A volunteer came over to say hi to us.  She was in love with Jackson.  Come to find out she works in the play room at TouchPoint and started working a few weeks after we went through the parent training program. Jackson was pulling my hair a lot while we were talking.   The volunteer leaned in too close to Jackson and he swiped off her glasses.  As I was saying sorry she said not to worry she was used to that.  It is nice to be able to go out in public and not have to worry about explaining that your son has some impulsive behaviors.  Sara came over to us and we took him to mingle with some of the other kids.  He wasn’t interested in them, but the DVD player was working well.  We went back to the table and I left for a few moments to go get some more cookies.  When I came back, Jackson was pulling Sara’s hair and a volunteer was helping her.  Jackson did not like that I walked away from the table.  The volunteer was able help free Sara’s hair from his hands.  As Sara was thanking the volunteer Sara said, “I don’t think we are going to be able to make it to see Santa.”  With that the volunteer walked away and returned with a gift for Jackson. I almost cried.  He got a Teddy Bear that when you squeeze the hand the cheeks and belly light up.  He loved it and started giving it kisses right way.  He was getting really tired, so we left the event shortly after.  Hair pulling aside, Jackson was all smiles and seemed to really enjoy the event, we did too.

Friday night we went to a fundraiser “Holiday Lights of Love Gala” hosted by Action for Autism featuring special holiday performances by the children of Howard Park Center (Jackson’s school) and the American School.  The world-renowned artist Jesse Barnes was at the event and auctioned off several of his amazing paintings.  There were raffles and silent auctions throughout the event.  The night started off with the children performing before dinner was served.  I brought my video camera hoping to be able capture Jackson’s theatrical debut.  Since Jackson was performing, we received free tickets, so our table was at the back of the room, but that just meant I could stand and film.  All I can say is that Jackson completely stole the show.  His little learners class, which consists 2 year olds of half typical and half with special needs, was by far the cutest of the evening.  I wish I would have had my Tripod, so I apologize for my amateur shaky video.  I am also upset that in the middle of the performance the camera picked up on something else to focus on besides the children, but I was able to get it back in a few seconds.  All of the other video I took that night did not have the blur out problem, so I blame the Hamilton Black Cloud of luck.  Either way I was able to capture some amazing footage.  Jackson was not intimidated by the 100 plus people staring up at the stage.  He shook his bells without throwing them, well until it was over at least.  He smiled, he laughed, he danced, and most importantly he truly had a blast. He even made the crowd giggle at one point.  Jackson absolutely loved the stage.  Not that it makes any difference, but all the children that were on stage with Jackson were his typical peers, he was the only one with special needs.  Jackson did so well and I couldn't be more proud.  When all the performances were finished all the children handed out ornaments they made in class to all the attendees.  Jackson’s teacher stopped by our table with him in tote and he could care less that we were there.  He was trying to get her to take him back to the stage.  It warms my heart to see my son taking after his mother’s love for the stage and theater arts. Until Friday night, I was not ready for Christmas at all, but Jackson has definitely put me in the spirit.

A weekend full of events..

I took Friday off to have my car worked on and it worked out perfect as we were meeting up with friends to have drinks and watch the Cardinals play game 2 of the World Series.   Sara’s mom watched Jackson for us and he stayed the night, so that meant we would get a chance to sleep in.  Even though the Cardinals lost, the game was good and it was nice to catch up on some us time with friends.  Since Jackson is an earlier riser my internal alarm clock goes off every morning even when my actual alarm clock is not set.  So I was awake at 4:45 AM naturally and it took me just over an hour to fall back asleep.  Does everyone do this?  Then when grandma called to let us know she was on her way at 7:30 AM it scared the bejeebus out of me.  I was not ready to get out bed that is for sure.  Jackson had ABA in the morning and later in the afternoon, so after his morning session we went to the mall.  Jackson was great at the mall, rode along in his stroller with no melt downs.  He didn’t want to get back in his car seat though for the ride home.  This is common when he has been from car, to stroller, back to car.  Luckily we grabbed Auntie Anne’s pretzels on our way out of the mall and it helped us coax Jackson into his seat.  He also took a cat nap on the way home. 

Jackson’s afternoon ABA session we could take the therapist with us for an outing.  I don’t usually get to experience this because I am at work all day, but I think it is awesome the therapists go with us to help us if Jackson is having a behavior.   Sara wanted to go the pumpkin patch out by our house and since it was during the afternoon on a Friday I figured it wouldn’t be too crowded.  We found front row parking which was great and there was hardly anyone there.  The pumpkin patch has a huge playground area.  They have a cornstalk maze, wooden characters with the faces cut out so you can stick your head/face through, slides, and climbing walls.  Jackson was excited for slide.  He is getting really good at landing on his feet and standing up at the end when he goes down.  We found an empty wagon and Jackson sat right in it as I pulled him to the patch.  I think he really enjoyed riding the wagon along the gravel road, I am sure it was like sitting in a massage chair. When we got the patch there were a lot pumpkins still there to my amazement with Halloween being a little over a week away.  We didn’t see any pumpkins in the patch that we liked, so we headed to the already picked and priced pumpkins.  Sara found 3 awesome pumpkins while I entertained Jackson who was having a meltdown.  Jackson wanted to run down the very big concrete slope that leads down to the playground.  I tried to calm him by putting him on my shoulders which always has worked in the past.  That just ended in throwing my sunglasses, yanking off my hat, and pulling my hair.  I finally freed his both of his hands which were not easy to do while he was on my shoulders and got him down; he threw himself on the ground.  I am sure Jackson was able to read my frustration because then he started crying.  I don’t think anyone saw this melt down as it took me awhile to get anyone’s attention to come help me.  By the time Sara reached us, Jackson calmed down a little bit enough and I was able to pick him up so we could pay for our pumpkins and leave.  Trying to get him in the car was not an easy task either. It was also a bad ride home because Jackson kept putting his fingers down this throat.  I was able to get him to stop by telling him hands ready and luckily it was a short ride home.

Saturday is my flag football day where I go watch my team, Mich Light, play.  I retried several years ago, but love watching the games.  Plus my team is like a close nit family and I always have so much fun during and after the games.  Last weekend I brought Jackson with me since Sara volunteered to work the Fragile X booth at the Autism walk.  The team couldn’t believe how big Jackson had grown since last season.  Since my car was in the shop this weekend, Sara and Jackson had to chauffeur me to the game so they wouldn’t be without a car in case of an emergency.  Sara also needed to return something in the city, so Jackson and I watched the 2^nd half of the 1^st game together.  Well sort of, we really didn’t get to watch, it was more like me chasing him along the side lines and everyone saying how cute he is.  He is shy for the first 5 or 10 minutes and then he is good to go.  He gave a few high fives, slapped Junior and Trishie in the face (they had sunglasses on), and got some lovens from Marque.  Sara returned from her errand and contemplated staying or leaving since there was a game in-between Mich Lights next one.  These games are 45 – 50 minutes long, but we live 35 – 45 minutes away…so it didn’t really make sense for them to go home to just have to turn around and come back.  Sara took Jackson over to an open field and they played push and case, a made up game that Jackson loves to play.  He will push your butt and you either run in the direction he has you pointed, or if you are Sara you dramatically act as though you are going to face plant into the ground.  Jackson loves this game. I think it gives him some sensory input on his joints.  When he chases you around he laughs so hard and sometimes falls down, it is very adorable.  He played this with her until just before the 2^nd game started.  I could tell Jackson was just about done with being in the park and watched until half time before we said good bye to everyone.  We were all exhausted on the way home.

Getting splashed by a penguin.

Sunday was Zoo day with the Hamilton’s.  My mom wanted to get everyone together for Boo at the Zoo and perhaps lunch or dinner.  I explained to my mom beforehand that the last few times we had been to the zoo, Jackson was done after about an hour, so I suggested we all drive separate in case my nephews wanted to stay longer.  She picked a date and time to meet up, but one problem Boo at the Zoo is at night and the Saturday before. We went last year and lines were so long that we didn’t really participate in the tables or booths they had set up.  Since it wasn’t Boot at the Zoo the kids couldn’t wear their costumes, but no one seemed to be too disappointed in that.  Everyone met up at our house and followed us to the Zoo.  It was crowded and we had 3 cars to park, so it was nice walk to get in.  Luckily it was another gorgeous day.  Jackson really enjoyed the Penguin house, he got splashed by one of the penguins. When we went to leave the penguins he started pulling Sara’s hair.  

The zoo had a bunch of ghosts, pumpkins, and skeletons in trees. They also had this grave site that had funny tombstone names.  Jackson was obsessed with following his cousin Owen around; Owen on the other was not amused.  Eventually we put Jackson back into his stroller and he did well for awhile. He did start putting his figures down his throat, but we had some crunchy snacks on hand that deterred that.  Andrew really wanted to see the tigers, so we headed to Big Cat Country.  It was around that time Jackson was done with the stroller and with the zoo.  I told my mom and sister-in-law that we had to go and if they wanted to stay they could, but it seemed everyone was hungry and ready to eat. So we headed back to the car.  This is when I wish we had the ability to teleport because we had 15 people in our group and not everyone understands that when Jackson is done, we have to high tail it. Jackson was getting frustrated and he was slamming himself back and forth in his stroller.  If we took him out of the stroller he took off running and when you tried to get him to go the direction you wanted or hold his hand, he melted like a wet noodle.  If you picked him up, hair pulling and head banging into your head or face was the next behavior.  There are only so many snacks you can give him before he is over that too.  As long as Sara was moving the stroller, he seemed to be doing OK. We also took off his Pujos jersey because it was getting warm. Since we have been to the zoo more than the rest of the crew and knew our way out I had Sara go ahead with the front of the group and I rallied up the back of the group.  We made it out of the zoo and to the cars in one piece. 

Jackson took a quick cat nap in the car while we drove over to Fitz’s.  It wasn’t very crowded there with it being late in the afternoon and they were bottling soda, so my nephews got to see that.  They took our large crowd upstairs.  It was really hot up stairs though. There were several TV’s playing the Rams game and some videos games for the boys to play.  Jackson was doing really well until poopy diaper time.  There were no changing tables upstairs, so we had to take him to the downstairs restroom.  The stairwell there is very long, high, and steel like the kind from a fire escape, not ideal for Jackson.  I picked him up and he did not like that and head butted me, but we hurried down the stairs.  After we got him changed, I had to use the restroom myself, so Sara took him back up.  Jackson did not want to go back into the highchair, so by the time I got up there I could Sara was really upset.  She was redoing her ponytail.  My mom came down from the other end of the table to talk to us and said if one of us kids would have ever pulled her hair like that, she would be in tears.  She told Sara she was amazed at how she handled it.  If it were her she would have pulled the child’s hair back.  I tried to explain to my mom that is the old way of disciplining and with Jackson that would not work.  Then our food was there, so we would have to discuss that topic another time.

After meal time the boys were running around and we let Jackson out, he of course wanted to go back to the suicide stairs.  So I had to keep him corralled in the area where we were.  If he wasn’t trying to make it over to the stairs he was chasing his cousin around.  Owen is only 7 and it is hard to explain to him why Jackson keeps getting so close and why Jackson won’t leave him alone.  Jackson is almost as tall as Owen and we were back at the table when Owen looked at Jackson and Jackson smacked him in the face.  Luckily it wasn’t hard and my sister-in-law told Owen not to worry about that, then not a minute later Jackson smacks him again this time hard enough to bring Owen to tears. I redirect Jackson away. Sara and my sister-in-law talk with Owen. Owen is really upset and doesn’t understand. I think Sara did an amazing job and explaining to Owen that when Jackson gets really excited he don’t know how to express it, that he wasn’t trying to hurt Owen.  I think Owen accepted that, at least until the next visit.  Everyone settled their bills and we were all heading home.  Jackson did not want to go in his car seat, but once we got him in everything was fine.  Sara sat back with him on the ride home.  I think the Fitz’s environment was not ideal for Jackson, but all things considering he did a really good job.  I think I zoned out most the way home because I don’t remember too much of that.