The gifts are wrapped. The groceries are bought. The laundry is done. We’re ready! I’m happy to have time to enjoy some peace before the chaos (that I love!). I’m happy that there IS peace.
So much is different this Christmas than this time last year. Kelsey has blossomed! During the summer she started “talking.” I put that in quotes because it was more babbling than real words. But it was babbling we were so, so grateful for.
Around the same time she started gesturing more. Shaking her head “no.” While some parents may become frustrated with the constant “no’s” from toddlers and preschoolers, we were ecstatic. COMMUNICATION!
The babbling quickly turned into real words. Her first word was “shoes.” Seriously! She loves her shoes, especially one pair of Stride Rite sneakers that I will never hand down to friends. She also says “cracker, thank you, phone, go, no, home, love you, this, these, and orange juice”as well as about 15-20 more I’m forgetting. And there’s more everyday.
“Hi” is her personal favorite. That one can become exhausting because she says it about 100 times a day. She wants to say so much more but “hi” is easy and always, always gets a response. It’s her way to engage. She says “Hi” and blows a kiss to every stranger on the street who will listen or engage with her. My once cranky 18 month old is now a three year old social butterfly who wants to make everyone in her path smile.
Kelsey is also repeating so many things we ask her to and many things we don’t. It’s so exciting. It’s HOPE! One of my favorite things to have her say is to answer “What does Santa say?” She has the cutest little “ho, ho!” answer. I must get that on video to be able to remember it forever. Too precious. And even more than cute, it’s an answer. It’s not just repeating, it’s connections and responses. Such a little thing is such a big gift for us.
Communication has also come to us in an unusual way (for most). Kelsey embraced the PODD she was given at school and is using it to talk to us as well as her teachers, therapists, and caregivers at church, the gym and even at parties with friends and neighbors.
In case you’re wondering, here’s a little information about PODDs that I found from a google search.
PODD is a way of organizing whole word and symbol vocabulary in a communication book or speech generating device to provide immersion and modelling for learning.
The aim of a PODD is to provide vocabulary:
for continuous communication all the time
for a range of messages
across a range of topics
in multiple environments.
PODDs can have different formats, depending on the individual physical, sensory and communication needs of the person who will use it.
PODDs have been developed over the past 15 years by Gayle Porter, a speech pathologist with the Cerebral Palsy Education Centre (CPEC) in Victoria. Each PODD format has been shaped by the experiences of both children with complex communication needs (CCN), and their communication partners.
In layman’s terms it’s (currently, for us at this stage) a large spiral bound book with hundreds of pictures to share a message.
Kelsey loves her PODD and loves communicating with it. She especially loves talking to her teachers with her PODD because they are the experts. The focus and attention she gives her teachers when they are using the PODD to talk to her is incredible for this mom to see. In ten minutes in her classroom, I saw intelligence that I hadn’t before. So much of what we assess of people’s intelligence is based on how they communicate.
When there is no communication…no pointing…no gesturing…no signing, one can assume there is little intellect. And that is so not the case. Our girl is very, very smart. She just needed the tools and “smart partners” to help her show what she knew and what she wanted to learn. We are so grateful for the Caroll County School System and our “home” school that happens to have some of the best of the best when it comes to using the PODD and teaching students with differing needs. It’s been a game changer for us. I hope one day she won’t need the PODD but I’m grateful for it now.
Another unexpected gift we have recently received is a new diagnosis for Kelsey. Nothing has changed for her but this diagnosis provides a new way to think about her. In October we were given the diagnosis of Cerebral Palsy. It’s surprising, even to me, that this could be a gift. Cerebral Palsy is a term that could send a lot of parents into a tailspin of depression. Heck if you had told me this three years ago (or even 1-2 years ago) I would have gone into my own downward spiral.
But now, after a couple months to process it. I am actually thankful for the CP diagnosis. Would I rather she not have it? Yes. I would also rather she didn’t have hydrocephalus, epilepsy, and hip displaysia but that’s where we’re at. The reason I actually like the label of CP is because I don’t have to explain it. It is a widely known term and explains “everything” for me. Especially to strangers.
Recently I was talking to someone about American Girl Dolls and how this woman was excited to give her granddaughter a doll for Christmas. Kelsey’s not into dolls yet but I explained how I hoped she would be and that I was so impressed with the company because they have dolls who she could specifically relate to since she has Cerebral Palsy.
My comment definitely took the woman by surprise but after a pause of pity on her part, she quickly was able to understand me as a mother, and Kelsey as a three year old without having to explain her whole journey. Well first she had a stroke In utero…then she developed hydrocephalus…then she…and on and on. And I could share about my precious daughter when before I may have skipped it because it would be too hard and long to explain for a conversation with a stranger.
I also can find positives in the CP diagnosis because it eases my worry a bit. I’m not as stressed about all that Kelsey will or will not do because we have that diagnosis. It brings me peace with who she is. Sidebar–I’m probably also at peace because of the steady stream of progress and development we’ve seen in the last couple months, but still, it’s all adding up nicely.
Cerebral Palsy certainly doesn’t define Kelsey but it allows us to fit in a certain box or category. That’s not always a good thing but with our repetoire of diagnoses, this one is known and more understood.
Ben’s Menkes is very foreign to most people–even doctors! Kelsey’s journey is tough and long and while she suffers from more “common” disorders, putting them altogether under the CP umbrella is helpful. I’m hoping we are able to start to connect with some parent and family communities with this diagnosis too, like we have with our dear Menkes community.
This Christmas we have many gifts that we are thankful for. 2016 was actually a wonderful year for our family. We are praying and hoping that 2017 brings us even more Copper Luck and Hope. We wish the same for you and your family as well. Merry Christmas and Happy New Year!
It’s been way too long since I posted. Things are actually spectacular lately…and subconsciously maybe I haven’t blogged because I don’t want to jinx anything. But the reason I felt compelled to write today is to spread some hope.
Hope has always been my jam. When we found out I was pregnant with Ben, my mind immediately started hoping. Hoping for a bouncing, adorable baby who I could dress up like all those Cabbage Patch Kids I had when I was young. Hoping for trips to our beloved Ocean City and of holidays to celebrate. Hoping for the family I had always dreamed about for as long as I could remember.
When Ben was born and diagnosed with Menkes, our hope was crushed, but after a couple weeks, it quickly resurfaced. Hope was something that could never be taken away.
My hope and dream of a healthy child was crushed beyond foreseeable repair. Then Kelsey was diagnosed with epilepsy, strabismus, hip displacement, developmental delays and much more. While hope was hard to find, it was always there. Heck I even used hope as part of my blog name. 😉
A lot of people have been very, very sad and have appeared to have lost hope in the past few days because of decisions made by our country. I, too, was disappointed with the election results on Tuesday, and most of my disappointment can be related to feelings of the heart. I have two kids who fit into a couple categories that were not respected by our president-elect. I have best friends who have been disrespected. I have a father who would have been disrespected. I have great sympathy and compassion for the under-privileged and misrepresented.
In our family , we have seen some very dark days. There has been a lot of heartache, depression and a feelings of hopelessness.
But today, my nine year old son who wasn’t supposed to live beyond ten years old got an 82% on his science quiz, ate pork, quinoa and green beans for dinner like it was going out of style, and cleaned his room without being asked.
My daughter who was so sad for over a year and wouldn’t play, engage, talk, or walk, gleefully greeted everyone she saw at Target with a booming and smiling “HI!!!!” She also told me she loved me about 35 times by pointing to the words in her communication book (PODD), took off her own coat (zipper and all) without prompting or help, and ate all her meals without the help of TV to cope.
On Tuesday, Election Day, she adamantly told me (in “our” language) that she wanted to use her walker to walk three houses down the street to her cousin’s house to see their dog. It’s been pure bliss for this mom who takes no small step on the developmental scale lightly.
Now, please don’t misunderstand me. Some of the comments that bother me most of all during hard times with our kids make me feel like I should defend my feelings of sadness. That I should feel guilty for being depressed. And that’s not at all what I’m saying. It’s just as someone who has grieved greatly, hang in there. It’s gonna be alright. Sometimes the most beautiful things come out of the darkest of times when hope seems nonexistent. And LOVE always wins.
In our house we have a lot of slogans that help keep things a little lighter and more positive when we are feeling anything but. Some we made up and some we stole but they’re all in a regular rotation. Some of them I’m sure you already use in your house too, but I thought I’d share them all in case you might find something new to help you too!
Stressful but Successful:
Dave coined this mantra awhile ago. Our life involves a lot of schlep, sweat and tears. Often all the hard work pays off and an outing is followed by this saying. We thought about making bumper stickers (SBS!) but somehow (?!?) never got around to it.
Nothing to it! or Piece of Cake!:
We say this when the exact opposite is true. It took everything in us to accomplish whatever “it” was, whether it’s getting out of the house, running an errand, or convincing a child to do something that should be “easy” for most.
Livin’ the Dream:
After a day-in-the-life, Dave will ask how my day was and this will often be the answer, usually with a side of sarcasm. I even found a T-shirt with this one at Kohl’s! I just so happened to be wearing this shirt yesterday when Ben had to get 12 stitches for getting whacked in the head with a golf club!
Embrace the Suck and Move the F@&£ On!:
This one was stolen from the movie “Whisky Tango Foxtrot,” and is much better when you drop the actual F-Bomb. When an injured veteran shared this wisdom with Tina Fey at the end of the movie, Dave and I looked at each other and started bawling. Well maybe that was just me, but Dave definitely teared up. I’m slowly getting to this point of acceptance in our “special” lives. Sometimes it really sucks but we just need to accept it and move on. Easier said than done but a little cursing is always helpful when life is stressful.
Don’t let Monday’s forecast affect Saturday’s fun:
I came up with this one over this past July 4th weekend. If you’ll remember, the meteorologists were predicting Independence Day to be “a total washout…rain all day…terrible!” Of course we had planned a big party at our house with about 30 people planning on attending. I found myself depressed on Saturday, two days before, about how Monday’s party would be ruined. It took awhile but I realized what my mind was doing and that I wasn’t participating in that Saturday’s fun activities because I was worried about the future. I shared this with my therapist (LOVE HER!) and she encouraged me to do the same thing whenever I was worried about the future.
After a less than optimistic orthopedic appointment for Kelsey about a month ago, I was feeling anxious and worrying about her future. I found myself stressing about a surgery that might happen in 5-7 years…about how her peers would accept her…about what equipment she would have to use to walk, etc. We also happened to be leaving for a vacation the next day. A vacation I dream about all year long. So instead of focusing on the excitement of the present I was obsessively worrying about the future. Since my therapist has me working on “being mindful”of my thoughts and how I handle them, I realized what I was doing. No amount of worry could help fix the fears I have for the future, so I might as well snap out of it and enjoy the vacation anticipation. It worked, shockingly so.
These little sayings help me to get through the tough times, to laugh a little and to focus on the present and all the positive we have in our lives. Well, that plus therapy, booze, coffee and chocolate!
What helps you get through the tough times–big or small? I’d love to know so I can steal it and use it for myself!
Kelsey has been using her walker a lot lately. I’m so happy that school did what I hoped it would do, in that sense (and in many others too). I hoped she’d want to use the walker more often since she had the opportunity, space and routine to do it. Nothing better than flat, empty linoleum to help you master your gait!
Before she started school, she would use the walker once, maybe twice a day for 30 seconds to walk a couple paces in the kitchen. Then, she’d get down on all fours since she is much more proficient and efficient at crawling! We’ve had the walker for about nine months and this was the case until school came into the picture. In the meantime, she also turned three years old.
Before I continue shall we look at the growth she made, physically, in just three months of school…
Three months!! March to June. It’s truly amazing. And I owe most of it to going to school. The confidence, the practice, the weight-baring, the stimulation…you can see it oozing out of her from her head to her toes.
In addition to school, we’ve tried to use the walker as much as we can. It takes a conscious effort and a fair amount of planning, patience and, as a friend said, a bit of a rock star quality to do so, but it’s so worth it…most days. As with any three year old (I’m sure…I don’t speak from experience), sometimes you just need to pick them up or strap them in the stroller and go. A three year old directing the show can go south quickly.
I started by making an effort to use the walker every Wednesday for speech. Our therapy office is located in a pretty accessible building, even though it’s on the second floor. And by the way, I thought I understood what accessible meant with Ben. I did not. A wheeled piece of equipment operated by a three year old with complex communication needs requires a whole other level of accessibility. But, anyway…we can park in the handicap spot near the door, we walk through the push-button handicap doors (that close way too quickly if you ask me), and then stroll to ride the elevator up to the second floor. The first couple of times were frustrating and hard with lots of stops to crawl (and maybe a few tears from me), but now, she’s a pro (ok, we’re both pros!). Here’s another look at a video of her walking at speech.
The next big challenge…and I was really proud of this one… was to take the walker to the Spring Fair at school. I couldn’t get many pictures because my girl was on the MOVE. Watch your toes and Achilles heel when she’s walking because she doesn’t stop for anything or anyone…again the communication piece with a new kid on the move would be very helpful…soon enough (I hope!).
I was proud of this outing because it was to a very crowded place. But I also knew it would be familiar and inside (at school on a rainy Saturday). We had friends visiting from out of town and my bestie is a super-mom of three and a preschool teacher getting her PhD in special education.
Everyone needs some Super Troopers in their lives.
…like teachers, brothers and friends.
Her older daughters could carry the walker from the front hallway to the gym and then to the cafeteria when Kelsey (or I) would need a break from the walking practice. This was all a great scenario for success. I was so grateful to our friends and felt so empowered to keep trying after this event since it went so well.
After my confidence increased from more regular use and reports from Kelsey’s teachers as to how well she was navigating the school without much fatigue, we’ve been trying to use the walker more often. While the school fair was awesome, most of the time it is Kelsey and me running here and there and I don’t often have three able-bodied people to help.
I follow another Mom Blogger whose daughter has spina bifida. Her blog Ability Hacker has given me all kinds of ideas and bravado in regards to making Kelsey’s journey easier. She posted about using hooks to carry her daughter’s walker on their stroller when both modes of travel were needed for an outing. I was determined to figure this one out because then Kelsey and I could be alone and still high-functioning. And we did it! We took her walker to meet friends at an accessible playground (God Bless the mother who came up with these!). I knew I’d need the stroller to get to the playground itself and for breaks. It was another success!
We’ve been regularly having Kelsey walk into church as well as some other typical outings that have gone well. She only really seems to like to walk for a purpose and that’s why outings are good. She is good with “Follow me! Come this way! Turn here!” She doesn’t seem to use it much at home because, again, crawling is much more efficient, especially with steps everywhere you look.
We’ve purchased all-terrain wheels for her walker because she has strong desires to walk on grass and mulch and it’s quite tricky with the regular wheels. We went to a fun party yesterday at a farm and while Kelsey had a BLAST on the pony ride and hay ride, she couldn’t really fully participate because of the grassy, hilly, rocky terrain. But we still had a wonderful time. And P.S., this time a year ago I would have DIED to see the JOY Kelsey got out of the this birthday party. It was awesome.
So. I feel quite proud of ourselves with how much we are making an effort to fit this awkward, atypical piece of armor into our lives. I’ve talked before about my love/hate relationship to our armor. Without it all, life would be so much worse, but I can’t help but feel the feels that one has when marching out into the judgey, normal world with a baby using a walker (not made by Fisher Price).
I can sum up people’s reaction to Kelsey walking like this. 33% of the people are in awe. They smile. They say she’s adorable. They say “she’s doing so well with that.” Leave it to a complete stranger and young mom at the playground to say one of my favorite comments, “You get ’em girlfriend!”
Another 33% pity us. You can see it in their eyes. I’m imagine the first 33% pity us to some extent too, but they hide it better with positivity and words.
And the other 33% ignore. I’m sure a portion of this population truly are ignoring us and in their own world with their own struggles and agendas, but I’ve noticed many a person trying not to look. Trying to look away. Because it’s a hard thing to see. Believe me…it’s very hard for us to see too, but it’s better than the alternative.
When Kelsey is walking, she is calm. She is confident. She is happy. And she’s walking. And I have to tell myself this almost daily. The struggle between acceptance and depression is a constant pull.
Dave and I went to an Orioles game last weekend. We were delighted to see a boy, probably Ben’s age, walking with his walker into Camden Yards. The boy was thrilled. The parents looked content. Life was good. And I was excited to see him and point him out to Dave. To see someone like us. And for about 30 seconds I only thought pride, and loved being able to relate to him. And then I started to pity him and to pity ourselves. It is so, so hard to be so, so different in this great big world. But as another dear friend said (what would I do without my friends!?!), “you can chose to live in fear (of what might happen or what someone might say or do) or you can chose to live.”
That’s what we’ve always chosen to do. Just because they “can’t” doesn’t mean they “shouldn’t.” Even though life is scary…from walking to climbing to riding and playing…they should get to try it all, fall, and get up again. I’ve sure had to…
I’ve been feeling rather “special” lately. While things compared to this time last year (epilepsy diagnosis), two years ago (cranky, cranky Kelsey) and three years ago (hydrocephalus and stroke diagnosis) are so, so good, it seems like our “normal” is so special and I’m still struggling to accept that.
I say things are good because they are. Both kids are healthy (knock on wood!) and happy (knock louder!). Kelsey is doing so well in school and is making gains in her therapies as well. I hoped that starting school would bring back her motivation to walk more than crawl and that’s definitely happened. Here’s a peek at her maneuvering her walker at private speech therapy the other day.
I’m so proud of her. She and I were struggling with the walker for a couple of weeks at therapy. The building we go to is pretty accessible, so I try to have her walk in by herself. After a couple of tough weeks, this was the first time she didn’t give up to crawl instead. This is a new walker. One that is customized to her. It has a back pad for her to rest against, front wheels that can swivel (when she’s ready) and back wheels that can either stop when pushed backwards (like they do now) or move backwards when she’s ready for that. And now after many adjustments by therapists, Daddy and Dad-Dad, she now handles it like a champ. We’ve got a long way to go…but we’ve come so far too.
So again…she is LIGHTYEARS beyond where she was this time last year. But pulling that walker out of the car in the handicap spot and having this cutie walk in to speech therapy. So special.
Kelsey’s communication has also improved ever-so-slightly. She has recently learned–and used appropriately–some new signs. “All done” is ALL she “said” for the last year. “All done” getting dressed. “All done” eating (both at the beginning and end of a meal). “All done” nap. “All done” everything. We learned pretty quickly that she wasn’t really all done everything. But she knew what it meant. And she knew that if she signed “all done” we would respond to her. It was her way to interact even if the message she was delivering didn’t fit. Recently she has learned how to say “help.” Then this weekend she FINALLY mastered “more.” The sign for “more” is a great one to start with any baby. So we did…when she was a baby two years ago. But at almost three years old, she finally got it. She has even used it appropriately which is awesome.
But still. Three to four signs that are sometimes used appropriately by a three year old is NOT enough to communicate one’s needs. And a lot of days this makes me feel so special. And makes Kelsey feel so frustrated. She’s telling me something but I have no idea what it is. Or I know exactly what it is (she wants me to turn Elmo on) but I’m stubborn and want her to point to the TV to turn it on or go and get the picture of Elmo we have hanging on the refrigerator for that very purpose…for her to express her desires. But instead she grunts and whines and often signs “all done.”
We took Kelsey to an ophthalmologist check up last week. This was with a new doctor and Dave and I both agreed that she was our most favorite yet. As predicted, she wanted us to start patching Kelsey’s good eye again to strengthen the right eye that is still “lazy.” If you look at the picture above, you might be able to tell that her left eye is focused on the camera and the right eye isn’t focused. And therefore the eyes aren’t aligned or working together as they should be. We were nervous because we hadn’t really had success with patching–be it with a sticky patch, glasses cover or eye drops–since she was six months or so…and even then she could take it off. And even eat it…
But so far (KNOCK, KNOCK) she is tolerating it pretty well. And that’s all I will say about that since we’ve been doing it for less than a week.
Again, so many things have improved, but… we have to help Kelsey walk. We have to help her talk. We have to help her see. These are things that should be innate. But for me they’re on the daily to-do list and it’s exhausting.
In the last two months both kids have qualified to have a one-on-one at school. The purposes for them are very necessary and entirely different from each other.
For Ben, the curriculum and demands are increasing (he will be a third grader in a month and a half!). In addition to that, Ben uses an iPad at school for a lot of his work completion. I look at this as a wonderful part of our special-ness. He has something that no one else in his class has and that is so necessary for the world we live in. He is so technologically literate and that will do nothing but help him to succeed in the future. He may even surpass some of his peers because a lot of testing is done electronically and he is using the technology in so many ways that can only, I assume, help him. But because he uses an iPad that no one else does, he needs an adult to help him navigate how to adapt the curriculum and/or his work output to meet the needs of his teacher and expectations.
Even though I can see SO many positives in the above paragraph and description of his one-on-one, when I look in the classroom and see an adult sitting next to him at his desk, all I can see is different. Special. And different is special…and we are all unique…and beautiful in our own ways…yadda…yadda…yadda. Easy to say when you’re not the one with the helper.
For Kelsey, it became clear to her teacher, quite quickly, that she needs help. Help with her walker. Help changing her diaper. She’s quite a needy little one. I had no-doubt she needed that adult helper. I’d like her to have a one-on-one at home! Oh wait. That’s me!
Ben had some new diagnoses from the ENT we recently visited as well. To me, it didn’t seem like he’s been able to breathe out of his nose since Labor Day. Well, apparently that’s true because he has a deviated septum, many polyps and major allergies. He, in fact, is not breathing out of his nose. Which is amazing. I can only imagine how much easier this year would have been if he could breathe! We’re on some new meds but that’s about all we know right now. We are waiting on the results of his adenoid xray. These diagnoses are not that abnormal. Plenty of people have these same problems. But add it all up and, well, it adds up.
This is not a new ballgame for us. I’ve only ever known parenting a special child. But recently it seems to be always-apparent. Is it because there’s nothing major happening medically (Thank you, Lord) that requires our attention to focus on actually thriving not just surviving? I don’t know. Is it because the gaps are widening as they get older? I’m not sure. People have told me before that they respected us as parents for never treating Ben as “different” or “special.” I think that might be because I never really allowed myself to accept that we were. But we are. We so are. And I’m cool with that. Most days. Or at least I’m slowly coming to terms with it.
Most days (or minutes) I’m so proud of who we are, how we roll (literally) and how special we are. And other times I just want to be the same. We are so lucky in so many ways. And I know that. And we’re so cute. We’ve always got cute.
Kelsey has been receiving four different types of therapy from our county services since she was born. When you turn 2 and 9 months, you qualify to enter a school-based pre-school or you can continue with your at-home therapy. We decided, at 2 and 10 months old, to have Kelsey attend the ECSN (Early Childhood Special Needs) class.
This was not an easy decision. At first, I was so excited to have her start. I knew the class she’d be in…it would be the same class Ben was in when he was 2 and 11 months old (and for three years after that). With the same wonderful teacher and (most of) the same wonderful therapists. The same teachers and therapists who threw us a baby shower after Kelsey was born.
Really it was a no brainer. Kelsey is FINALLY ready to learn. She’s still little and doesn’t HAVE to be in school, but she is finally engaging with her therapists. Finally starting to pick up on some developmental line-items that her therapists have been dying to check off for years!
So…great teachers, great school and a kiddo ready to learn? Sign me up. What’s to lose?!
A nap. Yep, this fabulous class that Kelsey qualifies for takes place from 1:15-3:45pm. And currently Kelsey usually sleeps most days from 1-4pm. ACK! The nap! The sacred nap! How could we possibly give up the nap?!?
Forget about the fact that it gives me a break from Kelsey’s special needs. Forget even that it gives me a break from staying at home with any two year old, special needs or not! Kelsey has had a stroke, hydrocephalus, four brain surgeries and epilepsy. If she’s taking a three hour nap, it’s probably because she (and her brain) needs one, don’t ya think?
When we heard about the class being in the afternoon, I gave a pretty hard and immediate “no” to the idea. We would have to figure something else out. I felt like Kelsey was “done” with home therapy (and so was I). I felt like she was ready for more than I could give her. I thought she was ready for socialization and growth. But I didn’t think she was ready to give up that three hour nap. I definitely wasn’t ready.
I worried, too, that if I forced her to miss a nap three days a week, that she might start to reject her nap on the days at home (please, no!). Also, she’s a tough one to entertain. She doesn’t like a lot of age-appropriate activities, crafts or play. She doesn’t love to sit and listen at the library, a music class or other similar things people fill their toddler’s time with. So without therapy to fill our mornings, how would I keep her entertained (but not overly tired) until school started at 1?
So we talked about it and decided to research other options. Maybe a typical, morning pre-school on top of home therapy? Maybe a situation where therapists would meet her at a typical school to service her? It would only be for a year, until she turned four (the fours class meets in the morning). But the more I looked at schools and thought about it, the more I knew we had to go for the ECSN class.
Kelsey is very needy. With almost no language and the fact that she chooses to crawl 98% of the time over walk with her walker, I didn’t know how a typical school would be able to handle her. She’s not as constantly cranky anymore, so that helps, but I could definitely see her falling through the cracks very quickly.
Ben went to a local church preschool when he turned 3, as well as the ECSN class. A developmental pediatrician told us that he should never only be in an all special needs class. He needed to see and hear typical kids interacting to learn from them. But Ben was walking (although unsteadily) and talking and signing (at least on a functional basis). So it worked to go to a “regular” school two days a week as well as the “special” class on the two (or three) opposite days.
I just didn’t see how Kelsey would thrive in a typical program. Many people get a little afraid of Kelsey. She takes a long time to warm to people and if she senses fear, she whines and retreats from interactions. And then people (family, therapists and friends alike) tend to avoid her or interactions with her. I don’t blame them. I avoid her when she’s super cranky too! 😉
All of this made me realize that we would have to risk losing the nap to be able to have Kelsey in the most appropriate setting. And that place is Winfield Elementary. Our “home” school and a place our family has been so happy with for five years.
Things moved pretty quickly after that decision and we were all excited for Kelsey to start school this afternoon. Ben is SUPER excited to have her at school with him. He’s even said a few times, “and now you’ll get to have a little break, Mom!” How sweet!
Today I took Kelsey to school, but eventually she will ride a bus. The bus will have car seats and will help with transporting her walker, which is very appreciated. The bus is the bus many of us, me included, made fun of when we were teenagers. Hopefully we’ve all become a little more aware of differences and celebrating them in this day-and-age, but I’m not naive. Luckily Kelsey is only almost-three and won’t have worry about teasing or ignorance for a bit…I hope.
It’s not the bus that Ben rides, though. Which means I will spend almost an hour of my day waiting for busses to pick up and drop off my kids! Thank goodness I’m able to be at home with them for all the transporting.
Because it’s March 14th. And because it was 1pm. And because it was raining, the drop-off for the first day of school for Kelsey didn’t have a lot of fanfare like the first day of school in August does. I got her dressed, took a quick picture, and off we went.
It wasn’t until I was back in the car when the first day of school tears came. You see when I got to the class, an angel was waiting for us and it all occurred to me once I had a second to process it all. I figured Kelsey would be a little confused with the new setting, faces and routine, but I thought she’d be ok…especially today when she didn’t know what to expect.
When we got to her class, our favorite babysitter…the same one who was Ben’s student teacher in kindergarten…the same one who babysat on Saturday night…and the same one who now works at Winfield…was waiting for Kelsey to arrive. She doesn’t work in what will be Kelsey’s class and she didn’t mention she’d be there, but she came and was waiting for her. She helped bring in her walker. She bent down and was helping Kelsey (and me!) to feel comfortable. And so I left feeling like everything would be just fine. And like I said, in the car I realized that some times an angel shows up when you least expect it. And I’m so thankful for that…and her…and all the teachers and therapists who will help my Kelsey be the best she can be!
I’ve been wanting to fill you in on our recent trip to Florida for our first Disney cruise but I’m still recovering…from the depression.
Forgive the length of this post. It’s part travel diary, part Disney Cruise review, part True Larrick Fashion of luck and life.
There were some very wonderful and magical memories made on the trip, but unfortunately it ended badly and I am still coming to terms with it after 10 months of planning and anticipation.
Before I can begin with the magical portion of the trip, there are some miserable precursors you should know about. Dave was struggling for weeks from a gout attack that left him in a lot of pain and prevented him from walking normally. He finally got the treatment he needed (after three weeks of pain) on the Monday before our flight to Orlando.
While Dave began to feel better, I came down with a lovely stomach virus on Tuesday. I couldn’t pack or even move out of bed the entire day so we moved our flights from 7am the next morning to 1:30pm to give us time to recover (and hope no one else got sick) and pack. This move worked wonders and the four of us, plus my mom, were able to get on the plane the next day. Whew!
Day Two-Magic Begins!
We stayed two nights before our cruise at a Marriott Vacation Club. We stayed here two years ago and loved it. We had as much fun this time! The weather was magical as well! We played miniature golf, swam and sat on the balcony while our MD friends were suffering through below freezing temperature highs.
We also visited Disney Springs and were able to soak up some Disney Magic, a delicious dinner, and some shopping. It was wonderful and even brought me to tears.
If you’ve been following me for awhile, you know that health has not been on our side. We have had a lot of illnesses this school year on top of our daily struggles. I also asked Santa to bring us a year of health and happiness. So far, that has not happened. When Dave was suffering and I was straddling the porcelain goddess, I prayed harder than I have in a long time. I prayed for health and joy. Our family needed joy so badly. Health and joy. Joy and health. Please, please, please.
So walking that evening in Disney Springs with smiles on my family’s faces, with music playing and the sun setting, I felt joy and couldn’t help but cry and be thankful.
The next morning, we drove an hour to Port Canaveral to board The Disney Dream. The whole check-in process was seamless…a bit crazy…but seamless. By the time we got a picture with Mickey, it was time to get on the ship.
I had done a TON of research and knew that for our family, our best bet was to go to the Enchanted Garden Restaurant. The drinks started to flow, the service was excellent (despite being a buffet, I never had to get out of my seat!), and we were feeling good!
We had to kill another half hour or so before our room would be available, so we checked out the kid’s club (Oceaneers Club and Lab) and the It’s a Small World Nursery. We were very impressed and excited about all we had heard and read about these kids areas, and Disney did not disappoint.
Next we headed to our rooms and they were ready! And they, too, did not disappoint. I was worried about storage, the space between kids’ sleeping areas and ours, and all the things that make life functional on a vacation. We had two connecting “Deluxe Family Oceanview Staterooms with Verandahs” and there was plenty of room for suitcases, all of our toiletries, and even our gargantuan double stroller (God Bless it).
The next couple of hours included a nap for Kelsey, some touring of the ship, an emergency drill (which we thought would be the worst part of the trip), and a sail away party! For those reading for your own planning purposes, I recommend changing/freshening up before the emergency drill. I didn’t and regretted it because after the drill, the fun just continued with lots of photo ops and no stops.
Ben was SO excited to be tall enough for the water slide! I wish I had my camera out when he measured himself and raised his arms in delight! It was great. He is short and often too short to ride, but not this time! So he rode and rode and rode.
After the fun, we fed the kids dinner and got ready for a fancy, adults-only dinner at Remy. Remy is a rat in Ratatouille, the Disney movie if you’ve never seen it. Remy the restaurant is an indulgent, over-the-top French restaurant that doesn’t hold back a thing. There’s an extra charge to dine, but I thought it’d be something Dave, my mom and I would enjoy. And we did!!! I won’t need to go again, but it was a lovely evening and a great way to relax and begin our cruise after all the travel and kid schlepping.
The adults were a tad nervous to leave the kids on our first night at their respective hang-outs, but I had read and researched so much that I was confident they would be okay. I figured that 1) Disney hires the best of the best. 2) Kelsey had an iPad for Elmo, her paci, her lovely, tons of toys and a crib. And 3) Ben had R2-D2.
Our dinner ran late, which in our kids’ world is very late. We didn’t get to pick them up until 9:30pm. Both kids were still raging and ready to go. We couldn’t peel Ben away from his club. He had just been appointed Darth Vader and was learning “how to use the force.” I mean…come on! So the kids went to bed late and then Dave and I watched the moon descend on the horizon with a glass of vino on the verandah. Perfection.
Day Four was the most magical day of all. We woke up (no one slept well on the trip because of all the skipped naps, late bedtimes and close quarters, but that’s neither here, nor there) and went to a yummy breakfast at The Royal Palace.
Then we went to drop Kelsey back off at the nursery (bad Mommy) so we could have some QT with Ben (good Mommy). She didn’t seem to mind, though. She loved being able to do her normal thing…crawl and play…in a different setting. And the staff always said how well she did and how happy she was (YAYAYAYAYAY!).
This day on the ship was technically a day we could get off and explore Nassau, Bahamas. But, on such a short cruise (with no days at sea), I thought we’d be better to stay on the ship and explore with less crowds. We weren’t the only ones with this idea, but it all worked out fine. Dave and Ben waited (for a lengthy period) for the AquaDuck. This is a water slide/roller coaster of-sorts that circles the whole ship. It’s awesome. I think if the wait were shorter, they would have gone more than once, but they liked it, nevertheless!
After the AquaDuck, a dip in the pool, and a couple more rounds on the regular water slide, Ben was starting to fade and get cranky. “Woulllld ya want to go to the Kids’ Club????” brought an immediate “YES!” We could barely keep up with him because he couldn’t get there fast enough! And, get this, they feed them! So while Ben went on his way and Kelsey was having a ball (and being fed too!), the adults went up to one of the multiple adults-only decks. Mom-Mom granted us permission to stay up there all afternoon while the kids napped and had fun! Sweet freedom! We lounged, drank, ate, drank some more and counted our blessings.
Then it was time to gussy up and prepare for some character greetings and pirate night! We were bummed we were too late to enter Kelsey in “Jack-Jack’s Incredible Diaper Derby” (a race to see who was the fastest crawler on the ship!). There were SO many activities for everyone. And Disney has an online app that makes it really easy to know what’s going on when and where.
As mentioned, the ship hosts a Pirates of the Caribbean night. We were prepared and brought costumes and accessories with us to join in the fun.
We had dinner, this evening, at Animator’s Palate. We were excited to experience what I thought might be Urban Legend when I started planning this trip. The waiters and waitresses DO, in fact cut your kids’ food and even feed them for you! HA!
Kelsey preferred Daddy’s help. She LOVED the soups the ship had to offer!
After dinner, we danced our way up to the Pirate Party! Note: Ben’s costume was a little small. Oops!
More fun was to be had after dark!
After dancing our butts off, we all turned into bed, exhausted after a long day of fun.
Day Five-Misery Ensues
On the morning of Day Five, my mom knocked on our connecting door to tell me Ben was sick and wanted me. He can easily be thrown off by rich foods and an interrupted schedule so I hoped it was that. I was wrong. It quickly became clear that Ben had a stomach virus. His second in two months. On a ship. In a now-what-seemed very small cabin. Because he was sick, we understood that we could no longer go ashore where our ship was now docked–Castaway Cay, Disney’s Private Island in The Bahamas. Insert many tears.
So here’s, as you can assume, why I’m still depressed about this trip. Even though everything leading up to it was great, we had to miss a day of our short, three day cruise. We spent it taking turns nursing Ben and exploring more of the ship. But no matter what we still did and still saw, the day and trip had a dark cloud hanging over it.
Poor, poor Ben (who spent his last vacation over New Year’s sick with a stomach virus, as well) had to stay in bed all day. He didn’t complain. He didn’t know what he was missing and he felt terrible. When you feel that badly, all you want to do is rest anyway.
Despite the cabin being small, it did offer round-the-clock room service. As well as any Disney movie on-demand, at any time. We weren’t told to stay in our cabin, but there was really no choice for him anyway. At this point I was glad we were getting off the ship the next day, at least to be able to “escape.”
Ben was a trooper…much more than the rest of us. Until, that is, when my mom and I went to take Kelsey to dinner. He complimented Kelsey on her cute dress, as he often does as such a sweet older brother, and then as we said good-bye, he said, “No! Wait for me!” We told him he couldn’t go and would have to stay in the room. That’s when he lost it. He burst into tears and was hysterical. He was okay all day, but then, I think as he started to feel better, he wanted to go. :(((( It was so sad. He (besides me) was most-excited about “da cruze.” He got the joy I was praying for, but it came to a screeching halt, a day too soon.
We missed out on the private island and all it had to offer. I had been so excited for Ben (and Kelsey) to be able to swim in an ocean without rough waves. I was excited for the water playgrounds to be experienced both in the ocean and on the shore. I was excited for Ben and Dave to feed the stingrays. And I was excited to eat, shop and play with all the things I had been reading about…in lovely weather, nonetheless. Instead we visited the spa (I know…woe is me, but it was super sad and not relaxing, albeit expensive), did a beer tasting, ate, shopped and drank our woes away.
With Ben feeling much better and sleeping all night, we packed up and headed to breakfast before disembarking. This part is tough because your bags have to be packed the night before, except for what you carry. I have some tips for anyone planning a trip like this but I’ll save the rest of you from those details.
While at breakfast, I “thanked God” that Dave had changed our flight from the original 5:30pm to 1pm the day before when Ben was in bed. We suddenly needed to get home faster and waiting around in an airport did not sound desirable. Plus when Dave originally booked our flights, I don’t think either of us realized how early you disembark (8am). Literally, the second after I made that proclamation, Dave checked his phone to find out that our flight had been CANCELED due to an impending ice storm due to hit Baltimore around the same time we would land. I did not believe Dave. It took him about three times to convince me he wasn’t pulling my leg. It could not be possible…a stomach bug, a changed flight…only to be canceled! But it was.
So that brought breakfast to an abrupt stop. Dave then spent the next 45 minutes on hold with Southwest while hundreds of other people were trying to find a way home. No people we could see, though. The cruise, no matter stomach bug or canceled flight has a air of merriment and joy (go figure). A good southern woman commented to me (with a scowl on my face) while waiting in line for the bathroom, “Did y’all have fun!? Isn’t it just the best!?” Needless to say we weren’t feeling joy and fun as much as bitterness and irritation.
After waiting on hold, doing research and much discussion, we decided to drive (the estimated 13 hours) home. There wouldn’t be any flights available until Wednesday and we were probably better off to just drive.
So drove, we did. In a rented Toyota Sienna with snacks, phones, pacifiers, laptops, loveys, a Nintendo DS and not-much patience, we drove. We made it to North Carolina before the weather reports we were hearing encouraged us to stop for the night. Right about that time Dave was bit by the stomach bug. It was close, but we just made it to the Marriott in Fayetteville, NC.
Dave took one room, and my mom and I and the kids took another. We settled into bed, thinking the misery was almost over. But…in true Larrick fashion (thanks, friend, who coined this new favorite phrase of mine) the fire alarms in the hotel went off. It scared all of us, but Kelsey was inconsolable for the better part of an hour when they sounded three more times. I sat, rocking her, in pure disbelief. Numb.
Day Seven (One day longer than our trip was planned to be)
We made it through the night, and with Dave feeling better in the morning, we continued along towards Maryland. After leaving Orlando at 9am on Monday and after many, many pit stops and one over-nighter, we arrived back home in Mt. Airy at 4:30pm on Tuesday. Home, sweet home.
A Week Later
I’m still in disbelief. Well, not really. As another friend said, “If you didn’t have bad luck, you’d have no luck at all.” I believe this is our story. Our story is always like this. Bad with the good. Good with the bad. But I really, really wanted a trip with Joy and Health (and no ‘bad’) to help lift all of our spirits. It did in some ways, but the scar on the trip will bum me out for a long time. I’m not sure I’ll ever get Dave on a cruise again. He wasn’t a big fan of the idea to begin with. While it was magical, I thought for sure he’d go for it again, but now, I’m not so sure.
As I’ve moped around the last week, I came to the realization that I’m always a little sad after a trip is over. You plan and prepare and get excited for so long, that once it’s done, there’s some sadness. So I’m sure it’s that too. Disney Depression. But the sad ending to our trip definitely isn’t helping. I’m not the only one either. We’ve all had trouble with “re-entry” into the real world.
Thanks for listening to me vent. We really are lucky to be able to go on trips like this and I know that. We’ll march on. And we’ll HOPE for better LUCK in the future.
P. S. Feel free to ask ANYTHING about the cruise, itself! I would still highly recommend it to anyone looking for a little magic and joy.
Do you read Glennon over at Momastery? You should. She’s so good. She taught me to use my Perspectacles, even though I am still so bad at doing so. She says “when I feel (something) lacking- I don’t need new things, I need new eyes with which to see the things I already have.”
I, personally, am usually only focused on my own situation. How hard I have it. How tough our circumstances are. But wearing one’s perspectacles can really help when you’re feeling low.
I’ve been feeling low for awhile. January did not help. A blizzard did not help. Some best friends and neighbors moving did not help. Sicknesses did NOT help. (Stomach viruses! Strep! Fevers! Gout! Colds!). But after a really low week…ah-hem, thanks a lot, Jonas…I feel better. And part of what’s helped is my perspectacles.
Today was a perfect example. Today is Wednesday. Wednesday is speech therapy day. Kelsey and I like Wednesdays. That’s because we L.O.V.E. her speech therapist, Julie. She really was a gift delivered at just the right time. This angel-on-Earth was Ben’s therapist when he was two, also. And we loved her just as much then. But Ben is pretty easy to love. Kelsey is a tougher cookie to crack. But Julie is her biggest fan. Literally. Julie sees things in Kelsey that even I don’t see. She “gets” her. But enough gushing on her. We don’t need perspectacles to know we love Julie. That is clear as day!
——Pardon Me. I interrupt this pleasant rant for a certain someone who just yelled “Mommy! I threw up,” from his bedroom after tucking the kids into bed a whole five minutes ago. Entire dinner cleaned up off the floor and out of the drain in the sink it wouldn’t go down. Sheets changed. Outfit changed. Empty bucket that was two feet away moved closer to bed. Laundry started. Big Gulp of Cabernet poured. Don’t worry…it was just a cough induced (that he’s had since September) puke. Where’s the sobbing emoji when I need it, WordPress!?!?——
So. Where were we? Oh yes. Wednesdays. We love Wednesdays. We really love Wednesdays that don’t involve barfing 8 year olds, but that’s neither here nor there. I like Wednesdays because I know there will be positive things said about my daughter. She will show growth from the following week. She will be happy and learning. And, quite frankly, I don’t hate that Julie scoops Kelsey up for 50 minutes and I sit in the waiting room reading, checking Facebook, and catching up on emails.
The waiting room is where I saw the need for perspectacles. There when we arrived was a grandfather and his grandson (4?) and granddaughter (15 months?). They have been in the waiting room with me for the last month or so and I enjoy their company. I’m always amazed by highly involved grandfathers. They aren’t as rare as you may think either. Just yesterday I saw another grandfather and his granddaughter at our physical therapy appointment. My children’s grandfather is highly involved and has taken his grandson to therapy as well! We love you Dad-Dad!
Anyway, I enjoy watching this “Pop,” as he is called, play with his kiddos. He’s not on his phone or even reading a book. He plays with them every week and watches them and interacts a lot with them. And, usually, he really seems to like it. I wonder if he watches these kids everyday? Or just a couple times a week? I wonder a lot about other families at therapy appointments. I’m sure they do the same of us.
So today, I could tell things were a little off. His tolerance seemed lower. The grandson was adorably trying to get my attention and show me toys. This annoyed Pop. The granddaughter was being “mischievous.” Pop said that many times. He told a story, more than once, about how the girl was provoking her brother, and then the dog, yesterday. He was bothered when the girl put the puzzle in the wrong spot. He was bothered when the girl was taking all the toys out of the bin. I could just tell that he was having a rough day and he wasn’t in the mood for toddlers and preschoolers. Hey, we can ALL relate to that one, right!?! Some times you are just not in the mood for their adorable quirks and behaviors.
But what I saw was a girl, who was probably just one year old who was walking, climbing, running, just like she should be. Just like Kelsey should be. She was following directions, putting puzzles together, and mimicking her grandfather. Just like she should be. Just like Kelsey should be. She was pointing, waving and repeating her play. Just like she should be. Just like Kelsey should be. This girl, who is likely half of Kelsey’s age was doing so many things that I pray for everyday. And these things were annoying her grandfather. I so wanted to hand him some perspectacles to see. That so many people are wishing for what you have…people two feet away from you…are wishing for what’s annoying you.
So then I turned that around. There are plenty of families with Menkes, hypotonia, hydrocephalus, epilepsy and strabismus who were praying for the results we got. There are families with situations totally different from ours who envy our “luck.” But that is so hard to see when you’re in the thick of things. Whether it be carpet-cleaning the puke up or nursing a child who just had brain surgery back to health. It’s often so hard to use those perspectacles when things are hard…but it can be so helpful for survival and happiness.
I heard a story today on the news about a girl who was murdered by students from Virginia Tech. This girl had overcome so many odds including multiple bouts with cancer. And she was murdered. By two college-educated scum bags. All I could think of was her mother. I know this woman. I don’t, but I can feel her pain so deeply. This woman cried, sobbed, prayed, loved, wept, prayed, begged, asked why, cried again, worked, prayed, hoped, had to put on her perspectacles so many times, and nursed her baby to health who had a terrible disease ravage her body. She did all this and her daughter was healthy. She had “beat” cancer. And then. She was murdered. All that heartache and victory only to have the absolute worst outcome. It’s beyond heart wrenching and incomprehensible.
And there’s another story about a very local five year old girl who died, tragically, in a sledding accident last week. A five year old. Playing. At her house. And now she’s gone. And her family is broken, forevermore.
There are countless stories like this. Countless families who are suffering, wishing and praying. And then there are families who are in a waiting room on a Wednesday and irritated with their children who are doing exactly what another family is wishing for.
The cliche’s are so cliche when you’re a special needs parent. “It could be worse. The grass is greener on the other side. You’re so strong. I couldn’t do what you do.” Blah, blah, blah. I hate the cliches. I also don’t like to be made to feel guilty when I’m also feeling sad. It all matters. It’s all hard.
It could be worse, but that doesn’t make it hurt any less.
But perspectacles help. They help with another cliche. “Enjoy it now! It doesn’t last! They grow up so fast!” Perspectacles definitely help to see the good, even if they don’t make the hurt any easier.
So I’ll take it. I’ll take the puking eight year old who has been coughing for a semester. I’ll take the snotty, clingy toddler who just got over a cold. My perspectacles are helping me to see clearly this week. And I’ll take it.