I've shared a lot with you about Breianna's nutritional journey to health. I feel compelled to elaborate more on Breianna's developmental journey. When Brei was born mommy instincts set in immediately that something wasn't right, however, I didn't know what wasn't right so I played the wait and see game along with Brei's pediatrician. "Let's wait and see how she does."... "Maybe she'll grow out of it."..."Come back in a few days and we'll think this through some more." ..."She's just delayed." "Failure to thrive." "Poor feeding."....etc etc. So at 5 months Brei hadn't met any milestones and I was getting ancy....However, if you remember from her nutritional journey to health, I was overly consumed with just keeping her alive and trying to get her to eat....So at 7 months when we started meeting with all the specialists, they promised me that once we met her nutritional deficits the developmental ones would catch up.....I believed them....I laugh about it now because I know better. There is no catching up when you are that behind and your brain hasn't received the nutrition needed to keep going, let alone help you reach developmental milestones. I was just so hopeful......
So - We reached the age of one and Brei was barely sitting up....we had been working with our local Help Me Grow, Early Intervention, In home OT and PT and were were also going to Children's Hospital for OT, PT and SPT. Barry's insurance was really good at the time and they actually paid for us to get 2 of each therapy a week. I look back now and mourn the loss of that insurance.
We were driving....A LOT! I mean, I think we were at Children's Hospital 4 days a week on average just for therapies and follow ups, that didn't even count feeding team, Neuro, Genetics, GI, Developmental and other various specialities. I guess I thought if I push really hard she will catch up, we'll get a reason for all this, fix it and move on with our lives. This is just a small bump in the road. I think deep down I knew this was the new norm in our lives, I just wasn't really ready to face it. So, I chose to put all of my energy into therapies, stretching, exercises, more therapies, feeding schedules and anything else the docs and therapists told me to do.
Brei hated all of it. She was so defensive to touch that any of it sent her over the edge. But we had to get through it, get her to the other side somehow. I mean, you could barely hold her without her shrieking. That's when I first learned about Sensory Processing Disorders and what those words would mean in my life and more importantly, what they would mean for Brei's development. She was a sensory seeker, meaning SHE had to touch everything, but she didn't want to be touched. She especially didn't want her face touched. (It took until she was 4 before she would even let me in her mouth with a toothbrush). We learned right away that we had to get in to an OT who specialized in Sensory Processing Disorders. That person is Aurora and we waited for 8 months to get in with her. Barry and I have always selected the very best therapists for our daughter and Aurora was the best there is. So we waited for her to treat our daughter and teach us how to help her.
We started learning terms like "brushing" and "sensory diets" and "desensitize" and "sensory motor" and "motor planning". Aurora got our kid, I mean she's teaching me what I knew I needed to know but I just didn't have the means to know. If we can help Brei understand her place in the world around her, it won't be so big and overwhelming and then she can flourish in other areas of development like social and gross motor.
So I'll start with gross motor. Wow! Delays, big delays. But, nothing we can't overcome with lots and lots of exercises and therapies. We selected PT's who were tough, bulldog types. We didn't want people who felt sorry for Brei and thought she was just so cute that they couldn't make her cry. We wanted therapists who would work Brei until she cried. We felt like it was a successful hour if Brei cried for at least 30 minutes of the session because that meant that progress was being made. We were religious with the home exercises. Our house had been converted into a makeshift rehabilitation center. We had equipment everywhere. So, Brei cried...a lot, at home too :) But it was for her own good. We were going to get her to a place where she could move around on her own and pick up things on her own and eventually maybe even walk. How about that....we decided that Brei was going to walk whether she liked it or not. So we set out on this mission like it was life or death or something. I think I was on the mission and my husband was actually just supporting my insanity. Either way, he was by my side every step of the way. So Brei started crawling into her 2nd year and she crawled for a very very very long time. In fact, she didn't grow and crawled for so stinking long that ALL of her clothes had holes in the knees. I mean, she was in 12 months clothes until she was almost 3 so needless to say her clothes got a lot of wear and tear. :)
I get sidetracked easily so bear with me. So, once we had Brei crawling the daunting task was to get her trunk and core stable enough to bring her to stand. Brei has a very weak trunk and she's extremely unstable on her feet so this was quite something for her to accomplish. We knew if she could master that then she could use a walker to get virtually anywhere and that would be huge in our quest to get her walking someday. So PT goals changed and we learned a whole slew of ways to help her with trunk stability, core strength and leg stretches that would help her get up on her feet. This stuff made Brei downright angry, she has poor range of motion in her ankles and very limited dorsiflexion to this day so back then it was actually very very painful for her to do these exercises. We started slow...well, by my standards they were slow, to outsiders looking in I probably appeared to have chosen Navy Seals to be her therapists and I was the Drill Sargent. Needless to say we got her up on her feet and she liked it up there. There was this whole new world that opened up to her. It was a strange and very confusing world that made her sensory processing disorders go completely out of whack...but she was intrigued by this new strange place. She was intrigued enough to want to stay there....so we got a walker. How wonderful that a family at Cincinnati Children's had donated it to our PT to use since their son had grown out of it. We were chosen to receive the walker....It was the perfect size. Brei hated it, because now she had some real work to do. That stuff on the ground was for amateurs, this stuff up on your feet is where the real fun begins. (Chastity if you are reading this, I am in no way taking away from what our Andrew goes through, I'm just writing this so people realize how hard it is in a walker). This walking business took strength and Brei just didn't have it yet. She would go about 1 step and fall to the ground screaming. Our PT was great, she would lift Brei right back up and make her take another step. I will admit, it was tough to watch at times. I mean, I think Brei was half in pain and half angry that she couldn't do it. So this was how our days went for awhile. Our son Davis would stand about 3 steps away from her holding something shiny and that would hopefully motivate her to get to him. After months, she made it the 3 steps, and eventually 4 steps and she got to the point where we took the walker with us because she was able to stay up walking for a short period of time. Then one day.....about 2 months before her 3rd birthday, we were at toddler class at MR/DD (Clinton County Board of Mental Retardation and Developmental Disabilities, now simply called Board of DD, I like that better) and Brei was walking around in the gym with her classmates, therapists, early intervention specialists etc. It's like she was just waiting for the right audience. The people that would completely appreciate what she was about to do and celebrate with her in a way she couldn't celebrate...with words......and cheering......wait for it.....here it is......SHE WALKED RIGHT OUT OF THAT WALKER! and never looked back! I couldn't even believe what had just happened....this was a huge accomplishment for my little girl and I didn't have a camera there to get the huge smile on her face. For those of you that know Brei, you know that smile I'm speaking about.
So, we celebrated this huge joy in Brei's life and set out on a whole new set of goals....bending over to pick up objects....worked on this for 2 years and finally at the age of 4 1/2 she bent over and picked something up without falling. (This one is actually still a work in progress because she still falls sometimes). Rolling a ball, climing a ladder, throwing, catching etc. Those are all big ones that are a work in progress, jumping we've written off all together right now. It just doesn't look like it will be one of those things that we get to anytime soon. But hey, not being able to jump isn't the end of the world.
So this past couple of years Brei started really struggling with her walking to the point where she's been in a wheelchair a lot at school, especially the last 6 months. She was growing in height but her feet weren't growing at all. (Her feet stayed the same size for 2 years but her body grew up about 3 inches). So, she was off balance and started this new walk to compensate. It was bad....bad bad bad. She was hyperextending her knees backwards and footslapping (very common with autism and polymicrogyria) which was causing her hip to buckle (horrible explanation but it's all I've got). this new way of walking was exhausting her because she was using all the wrong muscles that aren't normally used for walking and she was just wearing her little body out. So, we got new orthotics recently to help with all that and wow, she's like a new kid. She actually is even running a little bit now. Did I just say running? I did! It's clumsy and adorable how hard she tries. She giggles the entire time like a kid who just got a new toy. She knows how powerful it is to be able to run and she's going for it. And by the way, she did get a new toy, her orthotics. :)
So it's all about prioritizing...and right now...the priority is with LIFE skills. If I die tomorrow can she get dressed or bathe herself. No, she cannot. So that's where we are putting our energies. Taking off shoes is a biggy, still a goal, sometimes she remembers the steps, sometimes she doesn't, I'm still dressing her to this day with assistance. She can take off her shirt most days, some days she just forgets all together what to do and needs a lot of verbal cues. Pants are difficult, she's still in diapers and may be forever...geesh, I could write a book just on that...anyway, her fingers get confused on where the pants end and the diaper begins. It's actually hilarious to watch how hard she's concentrating. In fact, she concentrates so hard that she starts to suck on her tongue and make the overly annoying slurping sound that I've grown accustomed to. My husband doesn't quite have the patience for the sound. But we love when she's slurping her tongue because it means she's really really really trying really hard. So, we help with her pants sometimes, especially when I dress her really cute and the pants have buttons and zippers. I really should dress her in elastic waistbands everyday but come on...She's beautiful and her clothes should match her personality. And usually she's the one picking out what she wears....well, I mean, I give her options.
The other priority right now is communication. I've saved the best for last. In fact it's so important I'm going to give that topic it's own blog on another day. Until then.....
So, Little Hearts Big Smiles is near and dear to my heart. I co-founded this organization in 2006 with Holly Batton. We were two moms with young daughter's that had feeding tubes that were sick little girls. We knew that we could reach out to other moms to support us and for us to show support to. We had 4 meetings before anyone came. We almost didn't have our 5th meeting because we thought maybe this wasn't a need in our community. Two new moms came to our 5th meeting and from there we've grown into a non profit organization with a mission for inclusion and awareness. We partnered with the Clinton County Foundation and created a board of directors in 2008. We also decided at that time that there is a need in our community for an all inclusive playground. So, in addition to our IEP trainings, monthly activities for the kids, outreach to the community and support group meetings we embarked on a campaign to raise half a million dollars for a playground. We have created a governing board to oversee the day to day operations of our finance, fundraising, grant writing, planning and publicity committees. We became incorporated in 2011 and are on our way to being a stand alone 501 c3 organization. We have big plans for LHBS, we would like to have charter offices in other communities so that we can reach an ever growing population of families raising children with special needs.
Each year we provide an opportunity for the kids to go horseback riding. In Fall 2010, a friend from church, Dawn Martin and her company Martin Quarter Horses invited us out to ride. It was a wonderful afternoon for the kids! Thanks Dawn!
Another annual event is going to visit a pumpkin patch. In 2010 Bonnybrook Farms in Clarksville, Ohio invited us out for a fun filled day! Each of the kids got free tickets to do everything at the farm including visiting the horse barn, feeding catfish, picking pumpkins and an awesome hayride in the 300 acre woods! This is part of our group. We had 40 people attending that day!
This wheelchair swing is one of the most exciting features of our playground. This swing will be housed on one of the swing bays below. Thanks to Martinsville Lion's Club for donating this swing!
Phase I - I am excited to mention that we have raised enough money for this phase of the playground and we are on track to have the equipment in the ground by late April, Early May!
If we raise an additional $15,000 for the ground surfacing..swings like these will go in with Phase I! The only difference will be the wheelchair swing and some seated belted swings along with the swings in the photo!
Phase 2 draft. A toddler Weevos section! Our original scope did not include a toddler area so this is an exciting addition to the playground. I had the opportunity to sit in on a planning meeting this week with planning chairperson Jessie Woodruff to help choose the pieces for phases 3 and 4. Since I'm usually busy with fundraising events and publicity I don't make it to the planning meetings. It was very very exciting to get to plan the next phases of the playground!
