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.

Noggin bruising…

Jackson had a rough day yesterday and again today.  He has been banging his head a lot since upping his Tenex to a full dose.  Head banging is something he started doing around the time he got his first ear infection, he was around a year and half at the time. He has had numerous ear infections since then and around Christmas time we had tubes put in.  We have talked to all our therapists, doctors, and teachers to find an answer as to why or how to get it to stop. However no one can help us figure it out. Everyone asks us the same questions, when did he start, does he do it all the time, is he doing it for attention or if he doesn’t get his way, does he do it when you aren’t in the room, does he cry afterwards?  We have tried helmets, but we haven’t found one that works or that he will let us put on, let alone stay on. When we went to TouchPoint they saw that he used the behavior more when mamma was around.  He also used it when he wanted to get out of doing something. Since it is an injurious behavior, you can’t ignore it, so the suggestion of putting your hand between his head and object used to bang on all the while not talking to him or looking him in the eyes came into play.  Sometimes this works, sometimes redirecting works, but lately when try to put your hand in front of him, he will sit down quickly and use the hard wood floor.

Some FXS and Autism Spectrum disorder kiddos do behaviors when they have a sensory need.  To avert the head banging we take Jackson swinging or go for a ride in the car. We also push him in his little Tykes Coupe or his Radio Flyer. Talking him out on the deck when there is a cool breeze sometimes works or putting him on his jumpy horse.  Finally the best ammo for this is pushing the vacuum cleaner around, doesn’t even have to be on. Yesterday he actually broke the skin in the middle of his forehead. We had to use a Band-Aid to stop the bleeding because trying to use a wet wash cloth was ridiculous. Using all our aversions was not successful, as soon as we were done, right back to head banging. Pushing the vacuum around wasn’t working either, for whatever reason he had to have it on.  He just doesn’t seem like the same kid to me, seems less of a morning person and very crabby all day.

Sadly we can’t figure out why our little man is doing this. Does he feel dizzy? Does he have a headache? Do his ears hurt? Is it the medicine? Is it just because of his diagnosis's? Sara is worried that if she takes him in public that Child Protective Services will show up on our door step because he has a huge knot and bruise in the middle of his forehead.  We do live in an area where everyone likes to be up in your business and if you slip up at all the cops will be at the door.  I try to assure her that if CPS shows up we have enough documentation on his head banging behavior that they will just walk away.  Today I am the lucky one who left home to go to work, so Sara has to deal with it all by herself.  Lucky might not be the best statement as today has not been a great day work at all, so I have to figure out how to leave that at work and not bring it home.  Jackson has PT today and Sara is going to call the FX doctor in Chicago.  I really hope the doctor can give us some advice today…

The Hamilton Fragile Journey

We are the Hamilton family and welcome to our page! My name is Shanon and I am the luckiest person to walk this planet. I am the adoptive mother of a very energetic, loving, beautiful 2 year old son named Jackson. My wife, Sara, carried Jackson full term with no problems during the pregnancy.  He was our 5th try and we are very grateful to be parents. We want Jackson to lead a healthy, fun, loving life... 

Very early on we noticed that Jackson was very delayed in reaching all his milestones. We were, and still are, very concerned parents and our pediatrician is right there along side of us.  She had us get an evaluation from Missouri First Steps when Jackson was 6 months old, but he wasn't delayed enough to receive their services.  So then our pediatrician recommended that he see a PT (Physical Therapy) and OT (Occupational Therapy) at Children's Hospital at 8 months.  After receiving PT and OT for several months, the OT recommended a speech evaluation and felt that we should try going through Missouri First Steps again.  This time, Jackson was delayed enough to qualify for that program and he started receiving OT and DT (Developmental Therapy) at home. He now receives ST (Speech), PT, and ABA (Applied Behavior Analysis) as well.

Then our pediatrician recommended we see a neurologist.  The neurologist gave Jackson a diagnosis of PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified) and GDD (Global Developmental Delay) which are on the Autism Spectrum. We received this diagnosis in October 2010.  We asked the neurologist if we should have Jackson tested for Fragile X, but the neurologist frowned upon it saying that insurance typically doesn't cover that type of test and why would it matter because the therapy is the same.  We did not agree with the neurologist and insisted Jackson be tested. (By the way, most insurance companies do cover this test). A few months later in January 2011 we received a phone call from our pediatrician and Jackson has a Fragile X syndrome.

It has been a long frustrating journey of various doctors and therapist to be told, I am not sure what to tell you. I am so thankful for our pediatrician because she has been so proactive and hasn't settled for those types of answers.  As hard as it is to be a parent and receive diagnosis after diagnosis, it was a relief to finally know the underlining cause of Jackson's delays. Yes, many of the therapies used for children one the Autism Spectrum are the same; however Fragile X is an inherited cause of mental impairment.  Since receiving Jackson's diagnosis we have seen a geneticist. Sara and her father are both carriers. There are other family members who may be affected by Fragile X in some way and we have shared this information with them so they can pursue being tested as they choose.

Since Jackson's Fragile X diagnosis we have done a lot of research online which put us in contact with the Fragile X resource center of Missouri. We have met so many wonderful families who have been through many of the struggles we have faced. We also went to the Fragile X Clinic in Chicago and met Dr. Berry-Kravis.

We are so very proud of Jackson and his accomplishments thus far. Jackson is currently a preschool student at Howard Park Center and he absolutely loves it. He receives some therapy services at school and still some at home. He uses some sign language to communicate with us, mostly when he wants a cookie, a drink, or for us to push the vacuum around. LOL! We know our journey will not be easy.  There will be good days and great days, there will bad days and worse days, but with all the love and support we have from family and friends, we will overcome everything together. 

Thank you so much for reading our story…

Knowledge is power! Don’t give up, never take no for answer! Be persistent, you are the advocate for your child!

I can’t say it enough, if your child has been diagnosed with developmental delay and/or an autism spectrum disorder, have them tested for Fragile X syndrome.