Wednesday, June 29, 2011

A lovely day for the playground

Mama went to the gym this morning. While she was gone, Jackson and I went to the park to play. There wasn't very many other children at the park this morning, so we got to go straight to the swings. The playground only has two baby/toddler swings and two other swings , so it is rare that any of them are free. Jackson loves being on the swings and it helps with his sensory needs. The good thing about the playground swings unlike his swing we have at home is that it doesn't have a hard plastic back. Jackson likes to slam his head into the back of his swing at home. I think his head banging is another sensory need, but no doctor or therapist has been able to figure out what that need is or why he does it. They also can't help us figure out how to stop it, but that is another topic to post later. Jackson was laughing and having a great time on the swing.  Soon other kids came over to swing and then there was a small line for the baby swings. This always gives me anxiety because the other parents are trying to tell their children they have to wait all the while giving you a dirty look.  I completely believe in the take turn system, so after a few more minutes I grabbed Jackson up and we went over to the slides.  Surprisingly he was OK with that, even though he was fussing a bit when getting him out of the swing. His fuss was nothing like the 4 maybe 5 year old who was there with her texting father who kept giving me the look.  Although the look could have also been him trying to figure out if I am a dad or a mom, I get that a lot.  

The playground we go to is really nice; it has a bigger kid slide system and a smaller kid system. Jackson likes them both. We started off with the little kid station. Jackson is getting better at the steps and will go up now all by himself, although after the first step he is on his hands and knees crawling up them.  There wasn't any children on the smaller play set at this time, so that was OK. He went up and down a few times before he was ready for the bigger slide system. Over at the big kid station was a little boy that seemed to be same age as Jackson named Henry. His dad was helping climb up this cool plastic wall, something Jackson doesn't even notice and goes straight to the stairs. The big kid station makes me nervous because it is twice the height of the little kid station and it has a bunch of big openings. So naturally I am right behind Jackson as he goes up the stairs. The big kids are not mindful of the toddlers as they run and jump around or even over them. When we get to the top Henry is up there too and was cute to watch the two boys carefully hold onto the rails as they go over the wobbly bridge. Henry is saying hi repeatedly to Jackson and Jackson is just smiling from ear to ear at him doing his Fragile X sound "Eeeennnnwwww". Jackson is about 3 inches taller than Henry, so it is hard for me to tell if they are both around the same age. Both the boys loved the wobbly bridge, going back and forth. Henry's dad asked me how old my little one was.  I told him Jackson was 2. Henry’s dad got all excited, Henry’s 2 as well.  He also continued stating he can’t believe how fast it does. At times I do feel like it has gone fast, but at other times I feel like it hasn’t. We are both enjoying watching our little toddlers play. Henry finds the slide he likes; Jackson opts for the stairs to a different slide. Then Jackson bolts off back to the little play set. Henry is close behind. Yay, a toddler friend for the day.

Back over at the little play set is two pre-teen girls. They are exchanging cell phone numbers so they can text each other.  One of the little girls says to me, your baby is so cute.  I say thank you to her as she and her texting buddy head off elsewhere. Both Jackson and Henry are face to face again up on the little play set. Jackson is getting really close, as he knows no boundaries. I tell him he is too close and Henry turns around to look at me.  I didn’t see it, but I guess Jackson maybe stepped forward at the same time and the two bumped heads.  Henry says, ouch… and starts rubbing his head, kind of whimpering a little bit.  I said, Oh… did you guys bump heads and Henry nodded as he said yes.  Then Henry turned to Jackson and said he was sorry… still rubbing his little head.  Jackson, well he is just smiling as though nothing happened. He is also flapping his hands in excitement while saying “Eeeennnnwww”. Henry’s dad said, rub it off buddy… and to that he was fine.  The two went up and down a few more times and then Henry and his dad left.  Jackson didn’t notice them leave, but I thought it was great that he made a connection with someone his age and that the dad didn’t ask any questions or pass any judgments.  So to Henry’s dad, thank you. I hope to encounter more parents like you in our future endeavors at the playground.

It was getting HOT and Jackson was still amped up. He noticed the swings again, but they were full and it was time to go. Jackson wanted those swings, so he didn’t like that I was taking him away from that. I scooped him up and he was trying to pull off my hat. When we got to car he was getting upset and would not go in his car seat. Luckily I had some snacks and juice ready. After several attempts and singing farmer and dell over and over, I finally got him buckled in.  After some juice and Cheerios, I figured we were ready to get going. Jackson was still signing drink in the back seat, so I reached back to give him more. Then he started to squeeze the box, juice everywhere.  I forgot the darn juice box holder. I tell him hands to himself, but he is still trying to squeeze the box and laugh. I get almost out of the parking lot when the fingers down the throat start. I try giving him more Cheerios, but he is just tossing them, laughing, and sticking his fingers down the throat. So I pull into the next lot, get out of the car, and walk around to him. He signs he wants drink, so I give him some more. Now he seems better so I start driving again. I have to keep giving him Cheerios, but no more fingers.  I am few stop lights from home and my Cheerio stash is now gone..  Jackson starts sticking his fingers down his throat again. The therapists say to ignore this behavior, but it is so hard to because he will keep doing it until his vomits.  Vomit in car seat is not fun, but I driving the car so not much I can do. Sure enough Jackson vomits and he is laughing.  So he knows this is an undesired behavior. I try not to show any emotion and keep ignoring. We are two stop lights away, this is where Jackson will nod off on the drive home. Sure enough I look back there and his eyes are getting heaving.  When Jackson falls asleep in the car, doesn’t matter for how long…he will not take a nap.  No nap means no break for Mama or Nana and for this trip means no time to clean up messy vomit in car.  So I am pulling on his leg and singing at the top of my lungs to keep him away, he just smiles as he closes his eyes. We get home; vomit is not too bad in the car, mostly on his shorts and a little on his seat.  I pick him up and he rests his head on my shoulder.  So hard to be upset when he is cuddly because that is a rare occasion in itself.  We get inside and the doggies are going crazy…I get them outside. Take Jackson straight to the bathroom to clean up. Most of the vomit is on his shorts and socks, nothing on his shirt, but I took everything off anyway. Clean him all up, take him to his room, change diaper, and put on some shorts.  Tried to rock him a bit, but he wasn’t having it. Tried to lay him in the crib, he is not having that either. Back to rocking, this time he is OK with it and finally drifts off and I am able to put him the crib. I get everything cleaned up of his clothes and in the car, let the doggies back in, Mama pulls into garage and Jackson stayed asleep, but not for long…  I scoop him up and take him in our room, he cuddles for a little bit and drifts off for an hour, giving Mama some time to take a shower.  I stayed with him as he napped and gave myself a little rest time too.  He is so freaking adorable when he sleeps. 

Mama and Nana have a funeral, dinner date, and birthday party to go to later and Jackson is staying the night at grandma Sinky’s. Oye vey what a day already… 

Friday, June 24, 2011

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.