Fun(ish) Outings

Some friends and I decided to brave the heat and humidity (and three kids with fragile temperaments) and take our first trip to Carowinds last Friday.  To say I was less than thrilled at the prospect of this trip is an understatement.  I was very hesitant (actually dreading) to go not knowing how Haley would handle it.  Haley has been doing fairly well with her sensory processing issues until just recently.  I’m not sure if it is just typical toddler skepticism about new things but she is rejecting things that she once enjoyed, such as the water, our pool, having her hair washed, some foods, certain toys etc.  And if you have been to Carowinds, you know that this is a place that will send you into sensory overload. 

The day started out pretty good.  I got Haley a new pair of shades, more just for decoration :) than anything, but she really took to them and wore them the ENTIRE day!!!

Our plan was to hit the kiddie rides first while waiting for the water park to open.  I thought we could start off with a seemingly harmless ride…the carousel.  Ummm, not so harmless in Haley’s eyes.  She wouldn’t even think about riding the horses and once the ride started all heck broke loose.  Once the ride was over she clapped and smiled as if to say “thank God its over”.  So then we tried riding the train.  Same thing, super traumatic experience, no amounts of singing “The Wheels on the Bus” calmed her. 

So then we venture over to the water park.  Haley was quite skeptical at first but then decided it was ok to wade into the water, and she proceeded to walk me all over the entire splash park several time.  There were several little water spout, splash type things that Haley wanted to watch, but didn’t want to play with.  Just observing them was enough entertainment for her.  And watching the other kids slide down the slide was hilarious to her.  She just squealed with excitement with each kid kerplunking into the pool.  

Once we had had enough of the water we decided to go back out the the kiddie rides.  Most of the rides I knew Haley would not tolerate so we just watched the other kids ride.  She was perfectly content just watching, and the other big roller coaster were near us and she got a kick out of watching them zoom by. 

Then I thought I would try one last time to get her to ride a ride.  Wish I hadn’t even tried, it was just more than she or I could take.  It was a dinky little boat ride, but it was a total disaster.  Notice Haley screaming her head off in the picture, we are in the boat behind the “happy” people

She was so upset that we got off the ride before it even started…..party OVER!!!!  We were all hot, exhausted and had had enough, so we packed up and went home. 

The next day Will and I took Haley to the Schiele Museum.  Its a local science and nature museum.  We thought she would enjoy seeing the animal exhibits.  For the most part she did enjoy this excursion.  There were a few exhibits she did not appreciate like the giant T-Rex in the foyer or the a life size elephant display.  She really enjoyed the monkeys. 

 

There was also a random pirate exhibit which she was very cautious about (rightfully so, it was pirates after all LOL).  She would shy away from all the pirate mannequins and was perfectly content to head back to the look at the dead stuffed animals again. 

Nice depiction of hanging dead man:

Yo ho ho and and a bottle of rum milk

So lessoned learned from our few outings last weekend…..

1. STOP trying to push things on Haley that other “normal” kids are doing, she just isn’t ready for some things. 
2. But at the same time, don’t NOT do things for fear she will freak out.  Fear of failure has held me back most of my adult life, I don’t want to pass this attribute on to Haley. 
3. Figure out the fine balance between trying new things and pushing new things.  And face the fact that I will not always get this right.  
4. Haley will let us know in her own way what she can and can not handle and don’t be disappointed when she can’t handle things, and just be overjoyed when she can. 
5. Have FUN, enjoy this fleeting moment, she will not be a child forever. 

HELLO?????

Yes, I know…..I have totally been MIA. It has been crazy town here at the Buchanan household for the last few months. Still, NO excuse not to write a quick blog post or post some uber cute pictures of Haley. So what has been going on that has kept me from blogging about Haley you ask???? Well, we finally finished phase 3 of project “Backyard Oasis” It has been a pain in my neck labor of love for over 1 year now. The construction of a new retaining wall, patio extension and fireplace began just before Haley’s first birthday…..yeah, she is now almost 2 1/2!!!!! As always, nothing is as easy as it seems, but look at it now (except envision it with nice plush furniture, haven't gotten a picture since we got the furniture). Its such a nice place to sit back and relax, roast marshmallows and dry off by the fire. Even on a warm summers evening, a fire is nice (oxymoron, I know!!!)

I also just completed my first half MARATHON this past weekend. For those non-runners out there, that is 13.1 miles (or half the distance of a full marathon duh!!!) Why did I run 13.1 miles you ask??? Well, just to see if I could really, and although I’m not actively raising money for Jog for Joubert Syndrome, I’m still blogging about my training and doing a lot of “awareness raising” for JS which is equally important. I am toying with the idea of running a full marathon in October, I’m stoooopid, I know!!! If you are interested in reading my race report read {this} post on my training blog.

So, what has been going on with Haley???? I don’t really realize how much she is changing and accomplishing on a day-to-day basis. I get caught up in the daily grind and a few weeks pass and I turn around a realize how much she has changed right in front of my eyes. I really need to stop and take it all in!!! I don’t even know where to begin. Its the simple little things that really amaze me. She is saying a few “words” the funniest of which is “poop”. She learned the sign for it and will say “poop” and do the sign if you ask her if she has pooped. I thought it would be a great functional word when learning to potty train but she thinks it the most hilarious thing and says it whether she has to poop or not! She apparently loves potty humor. She also says “car” “Clyde” and “clock”. The letter of the week must have been “C'” last week. Grandma taught her how to sign “I love you” that is really cute!

She is also cruising a little bit along the furniture, getting braver and braver with that. She can pull herself up on to a low couch or chair, can get in and out of the pool (that she just started yesterday!) and has even taken several steps unassisted. She still looks like she is a drunken sailor and quite wobbly on her own, but she is sooooo close!!!! She doesn’t spend much time in her “go-go” which is her toy walker, because she gets very frustrated about not being able to get into small spaces. She also is getting very frustrated with her “real” walker because it won’t go backwards. We are really trying to encourage her to walk only holding one of our hands but she doesn’t like it. She will do it against her will at times

Speaking of frustration…..ughh, she is developing that classic “terrible twos” attitude. She wants what she wants NOW, and actually 5 minutes ago wouldn’t have been soon enough. She can turn that hissy fit off and on so quickly its scary!!!! There are times when she just lays on the floor on her belly and whines for 15 minutes or so……just because. I imagine a lot of her frustrations come from her poor communication (or our poor interpreting skills) I can’t begin to understand how frustrating it would be to live in a world where no one understood you.

She is also developing the palate of a two year old. Where she used to eat anything you put in front of her has now turned to ugly faces and lots of pushing plates and forks away and many uneaten meals. I try to resist the urge to offer different things until she finally gives approval to the 30th thing (which would probably be a cookie) I present to her. I try to stick firm to the belief that “you eat what we eat, if you don’t like it….I guess you won’t eat”. It may sound cruel, but kids will eventually eat when they are hungry even if its not the junk food they really want.

This year Haley does not seem to be very interested in the pool. So far she will only sit on the top step. She cries and shakes like a little leaf if you take her any farther. We have a Carowinds water park trip planned for this Friday and I’m just hoping that we don’t go and just sit under the umbrellas and watch everyone else play in the water because she is too overwhelmed to play. It is hard for me to go places like this with her because if we go and she is miserable it only reminds me that much more of how “different” she is. Its always a stab in the heart to watch kids do the things that she should be able to do if she didn’t have JS. But on the other hand, I can’t NOT try to do “normal” activities for fear that she won’t have a good time or she would never be exposed to anything. Its a catch 22. It just sucks that I have to risk spending a ton of money to just see if she will enjoy it.

Haley amazes us everyday with the things she just seems to know. She has a book that has unique animals in it and we hadn’t read that book in a while. I don’t even recall ever naming the animals for her like “koala” “iguana” “shark” but when I asked her to point those animals out she could….weird!!! She can also look at some of her number flash cards and see the number 3, for instance, and hold up the appropriate number of fingers. She is getting better at shapes, she will make a triangle with her fingers if you ask her what a triangle is. She points to her body parts and then points to the corresponding one on you, and even on some of her stuffed animals when asked. She is doing a lot of “pretend” play. She puts her babies in bed, covers them up, tries to dress them, gives them bottles. I’ve seen her on several occasions put the faces of two figurines together and make a kissing noise (adorable!!!) She is so smart, I can only imagine the things she could tell us if she could speak.

Well, I hadn’t intended for this to be a crazy long post, that's what I get for having such a time lapse in posting. Sorry about that. Take care!!!

Living with JS, a year later…..

I have been meaning to write this post since last week. The one year anniversary of D-Day (diagnosis day) was April 17th. I guess I have been putting it off because the thought of re-living this last year, one of the hardest years of our lives, just exhausted me. I have put it off long enough.

I guess we should consider ourselves lucky. We got the diagnosis of JS fairly quickly within a month or so after being referred to a neurologist. I have heard countless stories of unknown or vague diagnoses. I have learned through the Children’s Rare Disease Network that some children go undiagnosed for years, some never knowing the cause of their problems. And because I do not deal well with the unknown, we were relieved in a sense to have an answer.

We are also incredibly lucky because Haley’s condition is pretty mild. On one hand we are thankful, but on the other hand we carry a sense of guilt for those who are more severely affected. I have been told time and time again by other parents with JS not to feel guilty to just be thankful, but we still can’t help but have this emotion.

I have learned so much about JS and developmental delays over the past year, more than I ever cared to know. I feel like I have become a personal spokesperson for rare disease, for JS, for developmental delays, etc. We are constantly wearing our JS shirts and bracelets and take every opportunity to tell complete strangers about JS. Some people often look at me like I am crazy for being so open and honest about it. But it really does help me cope. I detest the stares and hate even more the complete avoidance of eye contact from strangers when they notice Haley’s head ticks or see her in public with her walker. People don’t know that being curious is alright, it gives me the opportunity to educate and raise awareness. We have learned to let the flat out rude comments and the otherwise innocent but insensitive ones roll off our backs. We realize that people just don’t know what to say and often say the wrong thing.

We have met so many wonderful people over the past year. We attended the JSF conference last July in Cincinnati. That was the best thing we ever did!!! And we are already looking forward to the next conference next July in Orlando (can you say “good excuse for family vacation!!!”). I have also “met” a lot of other people through the foundation through Facebook, and cannot wait to meet them in person. I think of the Joubert family as my extended family, it is such a wonderful support network!!!!

We have gone through the gamut of grieving emotions since D-day. Why did we grieve you ask? Well, as cold as it seems to say, no one goes into parenthood thinking they will have a special needs child, no one hopes for it. You only hope for the perfect child. And when you don’t have the so-called “perfect child” you do have to go through a grieving process because things aren’t going to go the way you planned. I know every person reading this who has a special needs child knows what I am talking about. Its the dirty little secret no one wants to talk about. Having a special needs child totally redefines what normal means to you. It is not to say that we don’t love our children just the way they are or want them to be something they are not, but we are all traveling a different path than we thought we would. (see this post for a poem that perfectly descibes this).

Haley has done exceptionally well this year. She has developed by leaps and bounds. Going from a totally non-mobile, totally unable to handle sensory overload to being on the verge of walking and handling sensory input much much better. She still has a long way to go. She is still not really talking, still has physical therapy twice a week, and occupational therapy, speech therapy, visual therapy, and play therapy all once a week and still uses a walker to walk. But she is otherwise a typical toddler, with typical mood swings, loves to play, and very affectionate. She has a wonderful sense of humor also.

The unknowns of JS are what bothered us the most when she was first diagnosed. Not knowing if she will ever walk or talk, what will her cognitive function be, will she ever develop the other complications associated with JS? Her development has given us a lot of encouragement. She continues to new things everyday and meeting her milestones slowly but surely. She is as smart as a whip and, so far, cognitively appropriate for her age. We made a visit to the NIH in Maryland this past December to study her kidneys and liver and they don’t think she is at any increased risk for the complications that can sometimes occur, but want us to continue to monitor that yearly. So the unknown, although it still drives us nuts to think about….we do not dwell on it like we initially did.

All in all I think we have dealt well with this diagnosis. I think being such outspoken advocates for Haley and for the JSF is therapeutic for us. We also have very strong support from our families and friends. Without you guys, we would be lost!

Loving the Spring Weather!

Spring fever has hit us big time!!!! We went to the park for the first time in a loonnnnng time a few weeks ago and I forgot to post the pictures. Haley is always a little skeptical when we first get to the park, a little overwhelmed by all the other kids running around like wild banshees and all the big equipment, but she eventually warms up to it and plays.

We also had a chili fund raiser at Chapel Hill last weekend, full report of my running blog {Here}. We were exhausted but it was a lot of fun and we had a pretty good turnout. We raised a total of $1178 so far, a few donations are still trickling in, but overall I think we were pretty successful.

2 Year Stats

Haley had her 2 year pediatrician appointment earlier this week and she is growing like a WEED! I can't remember the exact numbers (I should write these things down). She weighed almost 27 lbs I beleive, which is little over the 50th percentile and she had a pretty big height growth spurt and is now in the 75th percentile. She has always been below the 50th percentile for both height and weight, sometimes closer to 25th, so she really made a big leap at this appointment.

The doctor was pleased with how she is doing and the progress she is making. He talked to me a little about potty training. And although it is still early to expect her to fully potty train, he told me to go ahead and start introducing it. He said that we should not let the fact that she doesn't speak and can not walk hold her back from at least introducing potty training. We got her a potty for her birthday, but haven't really done anything with it yet. From what I hear potty training is a pain in the butt for the parents (no pun intended) to not be in any rush, so I will just let Haley tell us when she is ready.

Not much else to report, but I did want to leave you with some new pictures. There are a ton more on the Picasa album (the link is on the right side of this page). Enjoy!

Haley on her potty

At the Build-a-Bear party

Random cuteness

Happy 2nd Birthday My Sweet Baby Girl

Two years have come and gone. There is no truer statement than "they grow up so fast". This has been especially true this year. You have been through so much this year, more than some people have to endure in a lifetime. You have shown us the true meaning of perseverance, strength, patience, faith and love. But this year has also been much more than about your "differences". We refuse to let your difference define who you are.

You are coming in to your own and changing so much everyday. You have a huge personality. You are so silly and witty, even at just 2 years old. You have the greatest sense of humor. Your laugh is the best sound on earth, and its the most unique laugh. Although you do not speak true words yet, you certainly do know how to communicate and are very good and telling us what you do and do NOT want. You can be very opinionated in your own little way. It is hard to sometimes remember that although you can't talk to us, that you understand every single thing we are saying and can comprehend its meaning.

You are generally a calm and even tempered kid, although sometimes it does not feel that way. Parenthood is difficult and sometimes our patience wears thin and we have to remind ourselves that you really are an easy baby compared to others. You enjoy playing and can entertain yourself for hours. You love animals. Your puppies and kitties are some of your best friends. Playing with baby dolls and dollhouses is also something you enjoy doing. Jewelry has also become something that fascinates you, I have to hide my rings and necklaces from you sometimes! You like to play outside and it has been a really rough Winter, we have not been able to go out much and that does not make you happy. We are going to get you a swing set for your birthday so there will always be somewhere to swing and slide and play outside! We hope to be able to teach you how to swim this Summer, you really enjoy the pool.

You have always slept well at night and for the most part still do. For a brief time when you had your first ear infections, you did not want to lay down to sleep and kept sitting up in your bed at night. You go to sleep easily around 7:30 and sleep solid through the night, that is a great blessing!!!! Naps are starting to become sporadic though and we are afraid they will soon become a thing of the past, another sign that you are growing up!

You started going to preschool earlier this year, a special school where there are others with "differences" just like you. Your teachers are very special and care very much for you. You have made lots of friends and really enjoy going to school. Some days when we pick you up, we think you would rather stay there and play with your friends than come home and take a nap. You now have all your therapies at school. You have been using a walker to get around for a couple months, but much prefer crawling...its so much faster right now. But one day you will get the hang of walking and will no longer be held back by the limitations of your walker.

You are a very smart little girl too. You are starting to learn some of your colors and shapes. You can point to several parts of your body. You are the biggest copy-cat too, and really enjoy copying everything your Daddy does. Puzzles and shape sorters have become old hat to you and not very challenging. You are very analytical at times and we can just see the little wheels in your mind at work when you are trying to figure something out. We can only imagine what is going on in your mind if it could only come out!

Eating has become a struggle lately. You are not a picky eater, but it is hard to figure out what it is that you want to eat some days. And you must be the only child in America that does not much care for peanut butter and jelly sandwiches. Some of your favorite foods are bean burritos, blueberries, waffles, tuna, and slaw. You have very strange tastes, just like your Daddy!

You are simply the most beautiful little girl we have ever our laid eyes on, and have always thought so (and we am not just saying that because we are your parents). We can't go anywhere without at least one person stopping to admire how cute you are. Your hair is so long and pretty, we have still yet to cut it, we can't bear to cut it yet. And your big brown eyes could melt the coldest heart. You are going to be a heartbreaker! Mama has been horrible, horrible, horrible about not taking enough pictures this year and she will try harder this year to take as many pictures as she can of your sweet face!

And you are so very sweet at times. For a while you were giving out kisses like they were going out of style. Kiss and hug everybody! But now you have become more conservative with them, kisses are not free anymore. You love to cuddle your stuffed animals and will hug and pat them on the back. Blowing kisses is something you are very good at and do all the time.

Physically you are growing so big too. Although you still look kind of tiny, you are deceptively heavy. Picking you up is sometimes a struggle, you are very "solid" even if you are only 27ish pounds. You still have the tiniest feet, only wearing a size 4, when most kids your age are in at least a 6 or 7. You are starting to wear some size 24 month clothes, but mostly still fit in most size 18 month. Packing up the clothes you have grown out of is something that is hard for Mama to do, it reminds her of how tiny you used to be. You came in to this world at 7 pounds and now you are 20 pounds heavier, it is hard to believe!

It seems like just a blink of an eye ago that you were born, when we first met you and our lives as we knew it changed forever. That was the best day of our lives! You are such a joy and a blessing, and we love you so very much.

Love,

Your MaMa and DaDa

Haley in the News.....Again

Haley is becoming such a little celebrity and poster child for the special needs community isn't she??? Here in NC, rumors have been circulating that the state may cut funding to one of the therapies that Haley receives called "Community Based Rehabilative Services" (CBRS) a fancy term for "play therapy". Play therapy may not sound like a skilled, nitty gritty, beneficial type of therapy like physical or speech therapy, and I had my doubts when she first started CBRS. I mean, why does someone need therapy to learn how to play? But once Haley started CBRS, we saw a very significant turn around in her behavior. She had been receiving PT and OT for a couple months before she began CBRS and she was making some progress, but she continued to have a lot of heavy duty sensory issues (not wanting to be touched, having trouble transitioning to different situations, trouble in social situations, etc). Once CBRS started, it was like a lightbulb lit up in her. I think Haley is so receptive to CBRS because it is playtime to her, not work time. CBRS is much less structured than PT or OT, it is more child directed therapy. Her therapist works with her on many of the same goals that her other therapists do, but if she is putting up a lot of resistance to a certain activity, then the the therapist moves on to something else. I think the goal is to have fun and work on specific goals while doing so. Also her therapist, Alicia, is just great with Haley. She has such a gentle way with her and Haley is very receptive to her. CBRS seems to bring in parts of all the therapies and integrates them into a more holistic treatment for Haley. I think it helps her process what she has learned from PT, OT and ST and bring it all together so she can use her skills in a real-life situation.

The director of Haley's school asked me if I would speak with the Gaston Gazette about what CBRS means for Haley and how it has helped her. I talked with the reporter for 10 or 15 minutes and I thought I had given her a lot of useful information that would make a very strong article that would have a lot of impact. I had hoped my interview would have had more substance, but I just feel like the article is lacking the full meaning of what the program is all about, how it helps our kids, what it would mean to loose it, etc. I had hoped it would be a more in depth article, but I guess this was better than nothing. There is a little bit of misinformation, but basically correct. It only mentions Medicaid as a payor source. This affects more than just families who have Medicaid.....as we (unfortunatly) do not qualify for Medicaid. Anyway, here is the article from the Gaston Gazette which will be published Saturday, February 6th.

Parents worried about cuts in funding for special needs children

(Photo Mike Hensdill/The Gaston Gazette) At Bethlehem Family Life Center, kids with special abilities are helped to develop and grow. Here, CBRS therapist Alicia Starr works with Haley Buchanan using play therapy.

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(Photo Mike Hensdill/The Gaston Gazette) At Bethlehem Family Life Center, kids with special abilities are helped to develop and grow. Here, CBRS therapist Alicia Starr works with Ayden Whitaker using play therapy.

February 05, 2010 3:25 PM

Amanda Memrick

Haley Buchanan is about to turn 2, can crawl and is on the verge of walking.

But her mother Laura Buchanan said mastering her motor skills wouldn’t be possible without the help of community based rehabilitative services she receives.

Medicaid pays for community based rehabilitative services, which serves children up to age 3.

A glitch in the state plan’s wording means Medicaid may not pay for community based rehabilitative services as of June 30, said Brad Deen, spokesman for the Department of Health and Human Services.

The department is working with the federal Medicaid authority and the state’s own public health officials to change the wording so services don’t stop and Medicaid still pays, Deen said.

Haley was a little more than a year old when she was diagnosed with Joubert Syndrome, a rare genetic disorder, Buchanan said.

Haley receives “play therapy” to bring in physical, occupational, and speech therapy together, Buchanan said.

“It would be really sad to see those services go away because it helps her so much with her sensory issues,” Buchanan said.

Andee Jenkins’ son was born seven weeks premature.

She learned Ayden was behind developmentally after a trip to the pediatrician, who referred them to the Children’s Developmental Services Agencies, then to community based rehabilitative services.

“Me being a new parent, I would have had no idea what to do,” Jenkins said. “It’s truly been a blessing for us. If that was not there I don’t know how we would have gotten him up to speed.”

The Arc of Gaston County Director Sara Osborne said if this service stops, it could cause a backlog once children turn 3. A developmental disability isn’t something that will go away.

“When you’re diagnosed with Down syndrome, you’ve got it,” Osborne said. “It’s not a maybe.”

Osborne estimates that at least 400 children in Gaston County have a developmental disability.

Michele Stewart has operated Special Kare for Special Kids, a facility that serves children with developmental disabilities as well as those who have no developmental issues, since 1995.

The school operated without those funds for 10 years, but the community based rehabilitative services money has helped a lot of families pay for therapies given by Special Kare staff, Stewart said.

Deen said that some misinformation about the issue has been circulating. The potential pay halt is not because of budget constraints, he said.

“This is a paperwork problem and we’re working around it,” Deen said. “These are actually some very beneficial services. We don’t want them to end.”

Haley and Ayden’s parents, along with those who work with developmentally disabled children, don’t want that either.

“Your child is supposed to be born perfect,” Stewart said. “I can’t imagine getting out there alone.”

“You can reach Amanda Memrick at 704-869-1839.