The trees are turning and the leaves are beginning to fall. My street is full of a unique blend of green grass, mixed with golden yellow and burnt orange sprinkles of leaves. This time of year makes me reflect. It also makes me feel like life is in fast-forward.
We live across the street from a CBR, which stands for Community Based Residential Facility. You can read about them here. It was Halloween last year when I noticed something particular. While handing out candy to the adorable little kiddos, I noticed a Christmas tree in the front window of this house. Fully lit, with those big beautiful colored glass bulbs that you can't find anymore. If you do find them, the colors just aren't the same as the old ones. Jeremy was familiar with CBRs, but I was not.
This bothered me for weeks. Ok, let's be honest-months. Do you remember this post? I had same pent up feelings as when I was in that store. I didn't want to look at the house, nor did I want to pay attention to the coming and goings of the people that live there.
Shut it out. Tune it out. Make it disappear.
Thinking about your special needs child's future is a Catch 22. You have a hard time living in the moment because you know all of the things your child needs to do/accomplish/learn in his life. In the same breath, you don't want to think about the future because it is painful. Extremely painful.
I didn't want to think about my son being in a CBR. I didn't want him to be different.
Yesterday, my friend from the CBR did his daily morning walk and greeted AJ and I as we made our way to the car. I was sad when they took the Christmas tree down...even though it was well beyond the holiday season. I started to yearn for AJ to have the opportunity to live within the community...semi-independently. If you are thinking it is too early to be thinking about this-trust me-it is NOT.
My thoughts have changed and my heart has healed a little bit more. At this point, AJ would not be able to live in a CBR. I won't go into the reasonings, but coming to that conclusion was painful. But once it was made, a little more healing took place.
I must admit that I am struggling with juggling finishing my BA with all of AJ's needs, as well as just running the show around here. I finished my last class with a full night of tears and feeling completely overwhelmed and exhausted. I was bound to hit a wall sooner or later, right?
Yesterday morning I looked out the window and saw the leaves falling and the breeze blowing the beautiful maple tree that stands in the CBR's front yard. The presence of the CBR is my constant encouragement. While AJ is my first encouragement, the house is my second. I am not only finishing my degree for myself, but also to provide for our son. Jeremy is going for his NP to provide for us as a family and for AJ. We are planning our retirement with AJ.
So, I'm beginning this new class with my spirits lifted a bit higher, and my constant encouragement across the street. I'm doing my best to remember that this is only a season. And if life keeps flying by as fast as I feel it is, it will go faster than I think it will.
Wednesday, September 26, 2012
Monday, August 20, 2012
A Tender Moment
Last week I came home from my women's bible study group and knew AJ would be awake. The sitter left and I gave AJ his soft tissue massage and put him to bed. A few minutes later, I heard him crying. The kind of crying that tears your Mommy heart out. The cry that comes with sad face, pouty lip, and no sound for at least a few seconds. It is very rare for AJ to be this upset.
I turned on the light in the bathroom, which is next to his room, and went in to comfort him. I sat down next to him and rubbed his back. He calmed enough to lay down and have the covers tucked on all sides of his little body. I laid down next to him and rubbed his back. Suddenly, he cocked his head up to the side and was staring at the bathroom light through the air vent in the wall that is between the two rooms. A look of sheer terror came over his face and he started to panic and...cry. I quickly turned the light off and laid back down with him.
When we first met our little dude he was in a "bedroom" just off the baby play area in the orphanage. The room was very dim, with a very modern wood-blade fan turning slowly and the light on ultra-dim. There were bassinets lined up on all four walls.
My Mommy gut tells me that my little boy remembers. That he remembers laying in his bassinet for who knows how long waiting for someone to come and pick him up. I do my best not to think about his rough start at the orphanage, but his reaction to being in his room in darkness and seeing a soft light above him freaks him out. On another occasion we were laying on his floor with his body pillow and he looked out at the hall light-same face of sheer terror and panic. He scrambled into my lap and I rocked him. That was my first thought that he remembers.
From the very beginning I said no to the idea of putting a fan in his room. Don't get me wrong, the boy loves fans, but I could not put him in a situation that replicated his orphanage life. Even something as little as a fan triggered that desire in me. I fed him every bottle until he could hold the bottle on his own, because I know he was bottle-propped. How long did he lay there and wait? While we often mention that he couldn't, see, hear, or use his eyes together before we brought him home, he did see. This boy's visual memory is incredible.
I continued rubbing his back while he fought his tiredness. He held my right hand, I rubbed his back with my left hand. He fell asleep holding my hand and breathing peacefully. I'm forever grateful that I am able to be there for my sweet boy. While he has bonded to us amazingly well, sometimes I just think he still needs to know we're here. There was a time where he would not allow us to comfort him, so I'm thankful for this tender moment with my little man. I'm thankful he's HERE. And I'm thankful that even if he can't say Mama, he knows who his Mama is and has found my purpose in his life.
I turned on the light in the bathroom, which is next to his room, and went in to comfort him. I sat down next to him and rubbed his back. He calmed enough to lay down and have the covers tucked on all sides of his little body. I laid down next to him and rubbed his back. Suddenly, he cocked his head up to the side and was staring at the bathroom light through the air vent in the wall that is between the two rooms. A look of sheer terror came over his face and he started to panic and...cry. I quickly turned the light off and laid back down with him.
When we first met our little dude he was in a "bedroom" just off the baby play area in the orphanage. The room was very dim, with a very modern wood-blade fan turning slowly and the light on ultra-dim. There were bassinets lined up on all four walls.
My Mommy gut tells me that my little boy remembers. That he remembers laying in his bassinet for who knows how long waiting for someone to come and pick him up. I do my best not to think about his rough start at the orphanage, but his reaction to being in his room in darkness and seeing a soft light above him freaks him out. On another occasion we were laying on his floor with his body pillow and he looked out at the hall light-same face of sheer terror and panic. He scrambled into my lap and I rocked him. That was my first thought that he remembers.
From the very beginning I said no to the idea of putting a fan in his room. Don't get me wrong, the boy loves fans, but I could not put him in a situation that replicated his orphanage life. Even something as little as a fan triggered that desire in me. I fed him every bottle until he could hold the bottle on his own, because I know he was bottle-propped. How long did he lay there and wait? While we often mention that he couldn't, see, hear, or use his eyes together before we brought him home, he did see. This boy's visual memory is incredible.
I continued rubbing his back while he fought his tiredness. He held my right hand, I rubbed his back with my left hand. He fell asleep holding my hand and breathing peacefully. I'm forever grateful that I am able to be there for my sweet boy. While he has bonded to us amazingly well, sometimes I just think he still needs to know we're here. There was a time where he would not allow us to comfort him, so I'm thankful for this tender moment with my little man. I'm thankful he's HERE. And I'm thankful that even if he can't say Mama, he knows who his Mama is and has found my purpose in his life.
Thursday, August 16, 2012
The Motherload of Updates
To My Faithful Readers,
Oh what a summer it has been. Correction-oh what a spring and summer it has been. I've had an outline of things to blog about on the inside of my calendar for months-does that count? Good intentions, always. Here goes...
April
-During a regular PT session, AJ's physical therapist made the decision to discharge him. Yes, he's doing that WELL. We were able to use physical therapy to reverse his functional scoliosis. "Heidi, you did this on your own. You don't need me anymore!" Looking back I am a bit relieved decided this during that session. I think stating something to the idea of "Ok, four more sessions and then I'll be discharging him" would have ripped my heart out. I've blogged about his PT's awesomeness many times before. The idea of her not being AJ's PT was completely foreign to me. I spent the last 10 minutes of his session in complete shock. That shock continued as we walked to the car. I closed my door-and bawled. I just could not believe we were done. I never saw a tangible end to his physical therapy. It because part of our life-his PT became part of our family. It just never occurred me to me, yet here we were. Almost five years of therapy and he's just suddenly done. Never fear, his therapist did not get off easy. I still sent her regular emails and questions as needed. {Secretly she loves it!}
-AJ had a follow-up at the dental clinic. He was diagnosed with enamel hypoplasia. The enamel on his teeth did not develop correctly. It is hard, but thin and is not enough. This is due to his prematurity, low birth weight, early malnutrition, and most likely is hereditary. What does this mean? We need to brush his teeth as much as we can. Its a good thing he loves brushing his teeth! His overbite is at 10% which isn't too bad for a kid that still finds an immense amount of comfort in his thumb. He's pretty good about it during the day now, but at night that what he goes too. He's still young enough that as his big boy teeth come in they will self-correct.
-AJ started his hippotherapy (horse riding therapy) back up again at the end of April. His face was priceless as we pulled into the driveway. This kid has got a memory like his momma. At least a visual memory, that is. He's once again riding the pony, Chubbs. It is amazing to see how much he has grown and how different he looks on the horse. During his sessions he often rotates between sitting forward and backward on the horse. The change in his posture is remarkable when he's backwards. This is because he is sitting on the horse's withers (sort of like shoulder blades) which gently force him to sit upright and hold his posture. Horses are awesome. His riding center added some new fun things to the arena this year. AJ really like the hanging pool noodles that they walk through. It's like a therapy car wash.
May
-My mom and I went on a weekend getaway to Lake Geneva. Oh how I love me some girlie time. We shopped, drank wine, ate yummy food, and spent some awesome mother-daughter time together.
-I toured a school here in the area strictly for special needs children. I had gone into the tour with the idea that perhaps it would be appropriate for AJ someday. It is most certainly not appropriate for him. While I have no desire to discredit the school, my ideas for my son's education are very different from the environment I saw. Then it hit me-perhaps my purpose for touring this school was not to see it as an option for AJ, but to realize how well he truly is doing in his current environment. Sometimes it takes some outside perspective to grasp what you really need to know. I ran into a TOD that was part of AJ's initial IEP team. It's been years since I've seen her but she remembered me and of course AJ. That little boy touches more people than I ever thought possible.
-We had AJ's IEP meeting in May. Each year the group gets larger and the space we need changes. This time, we had 16 people with four tables. The plan we have in place for this next year was developed from last year's confusion. I suppose that is the best way to phrase that. His kindergarten year was rough. We are using what we learned from last year to make this year much more fluid for both AJ and his staff. AJ will be in 1st grade in just 3 weeks. Whoa. He'll attend school for 6 hours a day and continue receiving the following services: Special Education, Teacher of the Deaf, Auditory Therapy, Speech Therapy, Physical Therapy, Occupational Therapy, Specially Designed Physical Education, and one-on-one assistance.
-In addition to AJ's IEP, we formulated a FBA and FBP. No, I did not misspell FBI. A Functional Behavior Assessment was drawn up, from which we drafted a Function Behavior Plan. AJ had quite a few aggressive behaviors at school in the last few months. As with anything AJ, his reasoning for behavior is not based solely on one thing. The staff has struggled with him to keep his implants on, becoming extremely aggressive when they attempt to get him all together again. He was aggressive during his bathroom routine. Behaviors included biting, graded scratching, and pinching. Many things with AJ are a mystery or guessing game. The question I dread, why is he doing that? I feel like I am supposed to have the exact answer, and I don't. It is definitely behavior, but also communicating frustration, anger, etc. The more you fight him, the more he fights back and wants the attention. It doesn't matter if its positive or negative. We are squeak toys. I'll get to the squeak toys later. The FBP already needs to be changed. We'll be working on that as we begin the school year.
-AJ had another emc3 (Every Move Counts, Clicks, and Chats) evaluation in May. This is the first time an evaluation has been repeated on a student, so the fantastic special education teacher that consults on AJ's team was thrilled to do a follow-up evaluation. AJ did well throughout the evaluation, which we were able to see via a video of the session. Most of his reactions were congruent with his 2010 evaluation. The one section of the evaluation that stood out-Olfactory. AJ's response to lavender was mind-blowing. It calms him immediately. We are excited to use this evaluation, in addition to the knowledge we gathered for last year to form a functional day of school for him.
-AJ saw his physical medicine doctor in late May. This is the first time in a while that we've seen her and haven't done botox. He didn't need it. She asked for a follow-up in 3 months, so we will see her this month (August). AJ has had his night splint for a while now and will not sleep with it on. Correction-would not sleep with it on. She suggested we have him wear it during dinner, tv time, and other periods of down time, just to give him a good stretch. He's been doing very well with it. The splint keeps his leg/foot at a 90 degree angle and is hinged so we can decrease the angle to create more of a stretch.
-AJ had another change in his cochlear implant mapping. He struggles wearing them bilaterally. At this time, he didn't fight me when I put on his implants-but he fought everyone else on the planet.
-We celebrated AJ's 3rd Hearing Birthday!!!
-AJ had a slew of appointments at the Children's Development Center. We had initially wanted to have him tested for autism and Angelman's syndrome. This effort turned into the "Lexus" of workups and included individual evaluations from a development specialist, psychologist, and Speech & Language Pathologist. These evaluations were spread out over the month of May. I've never had reports sent to me so fast. I love that. In mid-June we met as a whole team. The following things were determined:
AJ is a calm, easy going child
AJ does not have autism
AJ does not have Angelman's syndrome and was already tested for it in a genetics test we did a few years ago
AJ had intra-uterine growth retardation. Meaning, his birth-mother's pregnancy started off on the wrong foot from the get-go. Add that to the lack of oxygen at birth and you have an AJ. The information given to us in his referral, estimated 4-6 weeks premature, is correct.
AJ's cognitive level is at a 2 year old level.
AJ's language level is at 3-6 months for expressive and 6-9 months for receptive
AJ very likely has speech and language disorders underneath everything else he has going on
AJ is ready to take it to the next level with his learning skills
AJ's behaviors are to get our attention. We are the squeak toys. He does something, we react. Repeat, repeat, repeat. The behavior should be ignored.
AJ is not in a plateau, and there is no reason to think he will. His brain is moving at its own pace.
If AJ's cognitive ability is at 2 years of age, I'm sure this has added to his struggles at school. What two year old goes to school all day?
AJ's brain and auditory memory may not interpret the information he's given through his cochlear implants.
AJ's difficulty at having "all systems go" prevents him from accessing the world as you and I do.
AJ is a special needs child, and will remain a special needs child.
-AJ lost his first tooth! He lost the bottom front right tooth. It was wiggly for a while, but then all of a sudden my mom noticed it missing as she was rolling him on the ball! We never did find it. My assumption is that he swallowed it.
-I received a call from the PE teacher one afternoon regarding AJ. He had been nominated for a scholarship award. A fellow Mom nominated AJ for the S.J.C Scholarship. S.J.C. was a teacher who taught at AJ's school for many years who passed a few years ago. His family setup a scholarship fund in his name, just as he had requested. Each year this award is handed out to a student with exceptional needs. This year, AJ was chosen. He received $250 to use toward whatever therapies or equipment AJ needs. We dedicated these funds to his hippotherapy. I had the pleasure of meeting S.J.C.'s brother and shared AJ's full-story with him. We are so grateful for the C family's generosity. I'm anxious to see AJ's name added to the plaque that hangs in the front entrance of the school. What an amazing gift for our kiddo.
June
-Through a chain of incredible events and meeting some incredible people, I've been given an amazing opportunity. I was asked to be a District Parent Liaison for our school district. I cannot tell you how excited I am about this! This fall will be jam-packed full of trainings, but I am so looking forward to it. Currently there is one liaison for our district..I just so happen to know her. Well. I'm excited to partner with her...and lighten her load! I'll be helping families advocate for their children! What could be better than that!!
-AJ graduated Kindergarten. Oh my cuteness. School had a cute little graduation ceremony and a song presentation by the kids. It's so amazing to watch them all grow each year. One of AJ's little lady friends helped him "cross the bridge" from kindergarten to 1st grade. It was adorable. And, as it turns out-she's adopted from Guatemala too. It's a small world people.
-We had a family reunion of sorts at a lake resort Jeremy and his family used to go to multiple times a year. It was a great weekend and celebrated the lives of those in his family that we've lost. AJ fell in love with the lake and was not too disappointed with the playground right across from our cottage.
-We celebrated out 11th wedding anniversary!
-A while ago AJ's pediatrician suggested we see a dermatologist to check out the scarring on the back of his head. As AJ grows, we've become concerned as to whether it will "stretch" with his head growth or who knows what else might happen to it. So, we added a dermatologist to AJ's repertoire of providers. I've always been mighty curious as to what the little bumps are on his legs. Something only a mom would notice, but still. He did have scabies when he was at the orphanage (I know, ewww) so I thought it was slight scarring from that. The dermatologist could not determine what caused the scar on his head. She was however concerned about whether or not a foreign matter was under the skin as the scar is very thick. She took a photo to consult with her colleagues and then requested an MRI. Here we go with the "He can't have an MRI because he has cochlear implants" speech. She was very understanding and requested that we have the results of his original MRI and CT scans sent to her. No one knows what the scar is. His MRI showed no foreign matter under the scar. All good news right? She referred us to the skin surgeon for a consult.
When she looked at his legs, she told me it was not from scabies. AJ was diagnosed with keratosis pilaris. The little bumps are due to clogged hair follicles. You can read more on the condition by clicking above. While this is common, AJ seemed rather irritated with his skin and scratched at times. His skin gets dry very quickly. He has it mostly on his upper arms, his thighs, and his legs. We switched to FREE products, meaning nothing with fragrance or dyes, etc. Laundry detergent, dryer sheets, lotion, etc. WHAT A DIFFERENCE it has made. It has made a huge difference for our little guy. I'm so relieved.
-AJ's ESY (summer school) staff was trained on his iPad and did a fantastic job during his 6 weeks of summer school. AJ really did well. Not only do I attribute that to his rock star staff, but also to the quiet, distraction-free environment he was learning in.
-My mom moved closer to us in June. Oh how we love having her closer! She's truly been a blessing to our family. I love that can just pop over and not drive a half hour. It's great!
-AJ turned 6 at the end of June. SIX. SEIS. OLD. We had a Route 66 themed party for him. I usually try to think of something AJ enjoys. Since he can't tell me what he'd like and doesn't understand the concept of birthdays yet, I think about what he loves to do, what he likes to play with, etc. He loves car rides, so Route 66 seemed perfect! In place of gifts for AJ, we asked guests to bring a baby item as a donation for layettes that a local non-profit puts together for expectant mothers. We were so excited and grateful for every one's generosity! Lots and lots of new moms and their babies will be well-stocked!!
-We put up a small (just less than 3 foot) pool in our yard. Oh what a good idea! No, I'm serious. AJ absolutely loves it. In fact, he learned to hold his breath under water. He can hold it for 10 seconds. This kid is going to be in the Special Olympics for swimming. I am so not kidding. The local Y where we hold a membership is quite a drive from here. It also makes me uncomfortable that they've had several cases of pertussis and whooping cough there in recent months. We're looking at other options for AJ to continue swimming in the colder months. Water does wonders for him!
-Jeremy was accepted in the University of Cinncinati's Family Nurse Practioner program! He'll be starting in January and is super excited! He's been out of school for 17 months so he's chompin' at the bit get back into the groove. By the way, its an online program with clinicals locally. We are not moving to Ohio. Nuh uh.
July
-Jeremy had a chance to sneak away to Oshkosh, Wisconsin for Lifest 2012. It was an incredible experience. Lifest is a Christian music festival. They had a grandstand and other smaller stages in the biggest park I've ever seen. We took out our folding chairs and sat and listened to music at the grandstand most of the days. At night we made a habit of going to one of the tents for the late acts. We had a fabulous time. Hearing the first few notes of "I Will Be Here" by Steven Curtis Chapman was amazing. Two friends of mine sang that song at our wedding. Jeremy and I danced in the middle of the aisle. Forget that there were 10,000 people sitting around us. I bawled. Uncontrollably. Therefore, confusing my husband-to him crying means you are sad. I was not sad, not in the least. My mind became a Rolodex of memories of our life together. We've been together 15 years. That is a lonnnng time. I was so proud of what we've become and how we have not only survived, but thrived. We'll definitely be going again next year.
August
-We took a trip to Iowa to visit Jeremy's parents. AJ experienced cotton candy for the first time, and went on his first real ride. Let me tell you, the Berry Go Round is nothing like the Tilt o' Whirl we had growing up! AJ was neutral about the ride, which really surprised me. We were just excited that he was tall enough this year to ride a ride.
-AJ was finally granted speech (feeding) therapy visits as well as occupational therapy. We have 12 sessions to squeeze into the remaining of August. Ufta! Feeding wise AJ has regressed a bit. He wants to claw everything and chooses not to use his spoon or fork. Because his cerebral palsy affects his left side, you would think the left side of his mouth would be weak also. Not so. The right side of his mouth is weak, where the left is his strong side. The body is a mysterious thing. He chooses to place things with his fingers and move them from side to side with his fingers vs. actually using his tongue to manipulate the foods. He's craving oral stimulation constantly. We've introduced harder items to him, such as the P chew, harder versions of thera-tubing, and theraband. His z-vibe broke and I'm anxious to get his new one. So much of his organization comes from oral awareness.
-AJ's been having gihugic (I love cooky words) growth spurts throughout the summer. I felt the need to schedule a "check-in" with his physical therapist. She said he looks really good, is fully mobile, and is self-correcting. Music to my ears. His left foot is turning in considerably, but not from his hip like it usually does. He's turning in from his tibia down. We're taping his foot with Kinescio tape. All the years we've used Kinescio, we've never taped his foot with it, so I wasn't sure how to do it. What a difference it makes. I also fixed his left shoe, which has Velcro that doesn't get along with his AFO orthotic. It constantly kept coming loose. I attached some extra Velcro, one sticky and one soft strip, to the existing Velcro strap on the shoe and presto! It worked like a charm. Because he wears orthotics, he looses out on the natural sensory input your foot has when you walk. Ok, to keep his foot straight and maintain balance, we take away some sensory. Such is life. Back to his PT's thoughts, she literally looked at me and said, "Why are you here? He's doing fantastic. And I am not taking him back on my service." Ok then. She calmed my fears, as always. In order to keep avoiding surgery, which is always our goal, we are doing soft tissue massage on his calf muscles and his foot especially. His plantar fascia is very active. We also do the foot wiggle, which consists of holding the sides of his foot and, wiggling rapidly.
-We had a playset built in our yard for the big boy himself. The look on his face when he saw it was PRICELESS. We added a rock climbing ramp to provide nature physical therapy. We are sneaky parents like that. He's going down the slide himself, which gets quite a bit of speed! He climbs up and down the ladder on his own and balances himself on the swings like a pro. He's an amazing little man. Having the set in our yard also helps keep him occupied. Since he's not the kid who will watch a tv show or sit and read and pretend play, this gives him something to focus on AND enjoy. We love it!
-I'm still taking courses to earn my BA in English. I'm 15 classes into my program. My original date of graduation was September 2013, but now it is December 2013. I had to add two classes to my schedule to fulfill the program requirements. I had to get to a certain point of the program to choose the classes I wanted to take. Summer has proved to be quite difficult trying to balance having AJ home and doing course work. Steady wins the race, right?
-AJ had a petit mal seizure last week after waking up from school. While my intial "in the moment" reactions to them are improving (which-I'm not sure if that is a good or bad thing) the after effect is what drains me. We went to a concert that night and I was just drained. Having fun? Sure. But if you looked at me I looked bored out my gourd. All in all, he's been doing well. He does have clusters of absent seizures, and I think he knows when they are coming on. Sometimes he's upset about it, other times he just comes back like flipping a switch. His little sad face is so heartbreaking. Buddy, if I could make them go away, I would. Believe me.
-AJ qualified for Family Support Program funds again this year. I made our home study visit appointment this week and am preparing everything we'll need to submit. We always seem to qualify when changes are about to be made. I'm not sure how we do that. Our plan is to have sidewalk in front of the house redone and widened a bit. New regulations regarding what the program will pay for are coming down from the state level. Our coordinator advised us to gather as much information as possible to "prove" that AJ needs this walkway. Despite this, we are ever grateful that he qualified for funding again.
-AJ continues to use his iPad for communication. Two weeks ago we had his iPad in church and he kept hitting the home button to exit from the menu or app that was up and clearly he didn't care for. Jeremy and I were thrilled! He shocked me when we were in Iowa by turning it on with the home button all by himself!! Wahoo! We have specific goals in his IEP related to his iPad and he just aced one of them! During summer school AJ was asked to listen to a musical instrument and then choose from three images of the instruments on his iPad. This little boy amazes me.
The SLP that evaluated him at the development center suggested using ABA flash card apps. AJ learns best by rote practice and let me tell you, these apps are awesome. There are different categories, such as emotions, foods, sports, actions, vehicles, animals, etc. She also gave me a mega list of apps that she a colleague put together, as well as a list the center hands out. One of these days I will dedicate a post to the 'ol iPad and all its awesomeness.
-A friend told me about the COOLEST APP EVER. Ok, maybe not the coolest, but it sure is informative for Jeremy and I as non-cochlear implant users. There are several apps that have a dB meter. Yes, I know this is awesome. The app is Decibel 10. I am seriously disturbed by how loud our world is. Despite this, I find this app amazingly helpful. AJ has been having a seriously hard time with his cochlear implants. This app is helping immensely as I can identify what range of sound bothers him and what he can tolerate. I'm anxious to take it to school and use the app in the school environment.
-Jeremy and I participated in our church's Believer's Baptism in the lake. What.An.Incredible.Experience. I really don't have words other than it was an amazing experience and I am so grateful we made the decision to be baptized.
-I've been participating in a women's bible study. The study is appropriately called "Stuck". The ladies in my group are all amazing women. Next week is our last week and I am incredibly sad that we won't be meeting anymore. We've followed this study and I've become a new woman because of it. Truly. As much as I am looking forward to meeting other peeps with the fall groups form, I am sad. Each week we've done a "Chica of the Week". Each of us writes a prayer request and we pick cards from a basket. You are to encourage and pray for your chica that week. I absolutely love this idea. I love sending encouragement and well wishes to my chica, and love receiving prayers and encouragement from whomever has me as their chica that week. Sigh. What I learned? I am not alone in my place of stuck.
-AJ is scheduled for a follow-up with his physical medicine doctor, a cochlear implant mapping, and an appt with his neurolgist within the next two weeks. He is also scheduled for a genetics consult and a consult with the skin surgeon regarding his head scar.
Is that it? I think so. All in all, AJ is doing great. Thanks for checking in here on the 'ol blog. She won't be neglected anymore. Promise. Ok, I promise I'll try.
Oh what a summer it has been. Correction-oh what a spring and summer it has been. I've had an outline of things to blog about on the inside of my calendar for months-does that count? Good intentions, always. Here goes...
April
-During a regular PT session, AJ's physical therapist made the decision to discharge him. Yes, he's doing that WELL. We were able to use physical therapy to reverse his functional scoliosis. "Heidi, you did this on your own. You don't need me anymore!" Looking back I am a bit relieved decided this during that session. I think stating something to the idea of "Ok, four more sessions and then I'll be discharging him" would have ripped my heart out. I've blogged about his PT's awesomeness many times before. The idea of her not being AJ's PT was completely foreign to me. I spent the last 10 minutes of his session in complete shock. That shock continued as we walked to the car. I closed my door-and bawled. I just could not believe we were done. I never saw a tangible end to his physical therapy. It because part of our life-his PT became part of our family. It just never occurred me to me, yet here we were. Almost five years of therapy and he's just suddenly done. Never fear, his therapist did not get off easy. I still sent her regular emails and questions as needed. {Secretly she loves it!}
-AJ had a follow-up at the dental clinic. He was diagnosed with enamel hypoplasia. The enamel on his teeth did not develop correctly. It is hard, but thin and is not enough. This is due to his prematurity, low birth weight, early malnutrition, and most likely is hereditary. What does this mean? We need to brush his teeth as much as we can. Its a good thing he loves brushing his teeth! His overbite is at 10% which isn't too bad for a kid that still finds an immense amount of comfort in his thumb. He's pretty good about it during the day now, but at night that what he goes too. He's still young enough that as his big boy teeth come in they will self-correct.
-AJ started his hippotherapy (horse riding therapy) back up again at the end of April. His face was priceless as we pulled into the driveway. This kid has got a memory like his momma. At least a visual memory, that is. He's once again riding the pony, Chubbs. It is amazing to see how much he has grown and how different he looks on the horse. During his sessions he often rotates between sitting forward and backward on the horse. The change in his posture is remarkable when he's backwards. This is because he is sitting on the horse's withers (sort of like shoulder blades) which gently force him to sit upright and hold his posture. Horses are awesome. His riding center added some new fun things to the arena this year. AJ really like the hanging pool noodles that they walk through. It's like a therapy car wash.
May
-My mom and I went on a weekend getaway to Lake Geneva. Oh how I love me some girlie time. We shopped, drank wine, ate yummy food, and spent some awesome mother-daughter time together.
-I toured a school here in the area strictly for special needs children. I had gone into the tour with the idea that perhaps it would be appropriate for AJ someday. It is most certainly not appropriate for him. While I have no desire to discredit the school, my ideas for my son's education are very different from the environment I saw. Then it hit me-perhaps my purpose for touring this school was not to see it as an option for AJ, but to realize how well he truly is doing in his current environment. Sometimes it takes some outside perspective to grasp what you really need to know. I ran into a TOD that was part of AJ's initial IEP team. It's been years since I've seen her but she remembered me and of course AJ. That little boy touches more people than I ever thought possible.
-We had AJ's IEP meeting in May. Each year the group gets larger and the space we need changes. This time, we had 16 people with four tables. The plan we have in place for this next year was developed from last year's confusion. I suppose that is the best way to phrase that. His kindergarten year was rough. We are using what we learned from last year to make this year much more fluid for both AJ and his staff. AJ will be in 1st grade in just 3 weeks. Whoa. He'll attend school for 6 hours a day and continue receiving the following services: Special Education, Teacher of the Deaf, Auditory Therapy, Speech Therapy, Physical Therapy, Occupational Therapy, Specially Designed Physical Education, and one-on-one assistance.
-In addition to AJ's IEP, we formulated a FBA and FBP. No, I did not misspell FBI. A Functional Behavior Assessment was drawn up, from which we drafted a Function Behavior Plan. AJ had quite a few aggressive behaviors at school in the last few months. As with anything AJ, his reasoning for behavior is not based solely on one thing. The staff has struggled with him to keep his implants on, becoming extremely aggressive when they attempt to get him all together again. He was aggressive during his bathroom routine. Behaviors included biting, graded scratching, and pinching. Many things with AJ are a mystery or guessing game. The question I dread, why is he doing that? I feel like I am supposed to have the exact answer, and I don't. It is definitely behavior, but also communicating frustration, anger, etc. The more you fight him, the more he fights back and wants the attention. It doesn't matter if its positive or negative. We are squeak toys. I'll get to the squeak toys later. The FBP already needs to be changed. We'll be working on that as we begin the school year.
-AJ had another emc3 (Every Move Counts, Clicks, and Chats) evaluation in May. This is the first time an evaluation has been repeated on a student, so the fantastic special education teacher that consults on AJ's team was thrilled to do a follow-up evaluation. AJ did well throughout the evaluation, which we were able to see via a video of the session. Most of his reactions were congruent with his 2010 evaluation. The one section of the evaluation that stood out-Olfactory. AJ's response to lavender was mind-blowing. It calms him immediately. We are excited to use this evaluation, in addition to the knowledge we gathered for last year to form a functional day of school for him.
-AJ saw his physical medicine doctor in late May. This is the first time in a while that we've seen her and haven't done botox. He didn't need it. She asked for a follow-up in 3 months, so we will see her this month (August). AJ has had his night splint for a while now and will not sleep with it on. Correction-would not sleep with it on. She suggested we have him wear it during dinner, tv time, and other periods of down time, just to give him a good stretch. He's been doing very well with it. The splint keeps his leg/foot at a 90 degree angle and is hinged so we can decrease the angle to create more of a stretch.
-AJ had another change in his cochlear implant mapping. He struggles wearing them bilaterally. At this time, he didn't fight me when I put on his implants-but he fought everyone else on the planet.
-We celebrated AJ's 3rd Hearing Birthday!!!
-AJ had a slew of appointments at the Children's Development Center. We had initially wanted to have him tested for autism and Angelman's syndrome. This effort turned into the "Lexus" of workups and included individual evaluations from a development specialist, psychologist, and Speech & Language Pathologist. These evaluations were spread out over the month of May. I've never had reports sent to me so fast. I love that. In mid-June we met as a whole team. The following things were determined:
AJ is a calm, easy going child
AJ does not have autism
AJ does not have Angelman's syndrome and was already tested for it in a genetics test we did a few years ago
AJ had intra-uterine growth retardation. Meaning, his birth-mother's pregnancy started off on the wrong foot from the get-go. Add that to the lack of oxygen at birth and you have an AJ. The information given to us in his referral, estimated 4-6 weeks premature, is correct.
AJ's cognitive level is at a 2 year old level.
AJ's language level is at 3-6 months for expressive and 6-9 months for receptive
AJ very likely has speech and language disorders underneath everything else he has going on
AJ is ready to take it to the next level with his learning skills
AJ's behaviors are to get our attention. We are the squeak toys. He does something, we react. Repeat, repeat, repeat. The behavior should be ignored.
AJ is not in a plateau, and there is no reason to think he will. His brain is moving at its own pace.
If AJ's cognitive ability is at 2 years of age, I'm sure this has added to his struggles at school. What two year old goes to school all day?
AJ's brain and auditory memory may not interpret the information he's given through his cochlear implants.
AJ's difficulty at having "all systems go" prevents him from accessing the world as you and I do.
AJ is a special needs child, and will remain a special needs child.
-AJ lost his first tooth! He lost the bottom front right tooth. It was wiggly for a while, but then all of a sudden my mom noticed it missing as she was rolling him on the ball! We never did find it. My assumption is that he swallowed it.
-I received a call from the PE teacher one afternoon regarding AJ. He had been nominated for a scholarship award. A fellow Mom nominated AJ for the S.J.C Scholarship. S.J.C. was a teacher who taught at AJ's school for many years who passed a few years ago. His family setup a scholarship fund in his name, just as he had requested. Each year this award is handed out to a student with exceptional needs. This year, AJ was chosen. He received $250 to use toward whatever therapies or equipment AJ needs. We dedicated these funds to his hippotherapy. I had the pleasure of meeting S.J.C.'s brother and shared AJ's full-story with him. We are so grateful for the C family's generosity. I'm anxious to see AJ's name added to the plaque that hangs in the front entrance of the school. What an amazing gift for our kiddo.
June
-Through a chain of incredible events and meeting some incredible people, I've been given an amazing opportunity. I was asked to be a District Parent Liaison for our school district. I cannot tell you how excited I am about this! This fall will be jam-packed full of trainings, but I am so looking forward to it. Currently there is one liaison for our district..I just so happen to know her. Well. I'm excited to partner with her...and lighten her load! I'll be helping families advocate for their children! What could be better than that!!
-AJ graduated Kindergarten. Oh my cuteness. School had a cute little graduation ceremony and a song presentation by the kids. It's so amazing to watch them all grow each year. One of AJ's little lady friends helped him "cross the bridge" from kindergarten to 1st grade. It was adorable. And, as it turns out-she's adopted from Guatemala too. It's a small world people.
-We had a family reunion of sorts at a lake resort Jeremy and his family used to go to multiple times a year. It was a great weekend and celebrated the lives of those in his family that we've lost. AJ fell in love with the lake and was not too disappointed with the playground right across from our cottage.
-We celebrated out 11th wedding anniversary!
-A while ago AJ's pediatrician suggested we see a dermatologist to check out the scarring on the back of his head. As AJ grows, we've become concerned as to whether it will "stretch" with his head growth or who knows what else might happen to it. So, we added a dermatologist to AJ's repertoire of providers. I've always been mighty curious as to what the little bumps are on his legs. Something only a mom would notice, but still. He did have scabies when he was at the orphanage (I know, ewww) so I thought it was slight scarring from that. The dermatologist could not determine what caused the scar on his head. She was however concerned about whether or not a foreign matter was under the skin as the scar is very thick. She took a photo to consult with her colleagues and then requested an MRI. Here we go with the "He can't have an MRI because he has cochlear implants" speech. She was very understanding and requested that we have the results of his original MRI and CT scans sent to her. No one knows what the scar is. His MRI showed no foreign matter under the scar. All good news right? She referred us to the skin surgeon for a consult.
When she looked at his legs, she told me it was not from scabies. AJ was diagnosed with keratosis pilaris. The little bumps are due to clogged hair follicles. You can read more on the condition by clicking above. While this is common, AJ seemed rather irritated with his skin and scratched at times. His skin gets dry very quickly. He has it mostly on his upper arms, his thighs, and his legs. We switched to FREE products, meaning nothing with fragrance or dyes, etc. Laundry detergent, dryer sheets, lotion, etc. WHAT A DIFFERENCE it has made. It has made a huge difference for our little guy. I'm so relieved.
-AJ's ESY (summer school) staff was trained on his iPad and did a fantastic job during his 6 weeks of summer school. AJ really did well. Not only do I attribute that to his rock star staff, but also to the quiet, distraction-free environment he was learning in.
-My mom moved closer to us in June. Oh how we love having her closer! She's truly been a blessing to our family. I love that can just pop over and not drive a half hour. It's great!
-AJ turned 6 at the end of June. SIX. SEIS. OLD. We had a Route 66 themed party for him. I usually try to think of something AJ enjoys. Since he can't tell me what he'd like and doesn't understand the concept of birthdays yet, I think about what he loves to do, what he likes to play with, etc. He loves car rides, so Route 66 seemed perfect! In place of gifts for AJ, we asked guests to bring a baby item as a donation for layettes that a local non-profit puts together for expectant mothers. We were so excited and grateful for every one's generosity! Lots and lots of new moms and their babies will be well-stocked!!
-We put up a small (just less than 3 foot) pool in our yard. Oh what a good idea! No, I'm serious. AJ absolutely loves it. In fact, he learned to hold his breath under water. He can hold it for 10 seconds. This kid is going to be in the Special Olympics for swimming. I am so not kidding. The local Y where we hold a membership is quite a drive from here. It also makes me uncomfortable that they've had several cases of pertussis and whooping cough there in recent months. We're looking at other options for AJ to continue swimming in the colder months. Water does wonders for him!
-Jeremy was accepted in the University of Cinncinati's Family Nurse Practioner program! He'll be starting in January and is super excited! He's been out of school for 17 months so he's chompin' at the bit get back into the groove. By the way, its an online program with clinicals locally. We are not moving to Ohio. Nuh uh.
July
-Jeremy had a chance to sneak away to Oshkosh, Wisconsin for Lifest 2012. It was an incredible experience. Lifest is a Christian music festival. They had a grandstand and other smaller stages in the biggest park I've ever seen. We took out our folding chairs and sat and listened to music at the grandstand most of the days. At night we made a habit of going to one of the tents for the late acts. We had a fabulous time. Hearing the first few notes of "I Will Be Here" by Steven Curtis Chapman was amazing. Two friends of mine sang that song at our wedding. Jeremy and I danced in the middle of the aisle. Forget that there were 10,000 people sitting around us. I bawled. Uncontrollably. Therefore, confusing my husband-to him crying means you are sad. I was not sad, not in the least. My mind became a Rolodex of memories of our life together. We've been together 15 years. That is a lonnnng time. I was so proud of what we've become and how we have not only survived, but thrived. We'll definitely be going again next year.
August
-We took a trip to Iowa to visit Jeremy's parents. AJ experienced cotton candy for the first time, and went on his first real ride. Let me tell you, the Berry Go Round is nothing like the Tilt o' Whirl we had growing up! AJ was neutral about the ride, which really surprised me. We were just excited that he was tall enough this year to ride a ride.
-AJ was finally granted speech (feeding) therapy visits as well as occupational therapy. We have 12 sessions to squeeze into the remaining of August. Ufta! Feeding wise AJ has regressed a bit. He wants to claw everything and chooses not to use his spoon or fork. Because his cerebral palsy affects his left side, you would think the left side of his mouth would be weak also. Not so. The right side of his mouth is weak, where the left is his strong side. The body is a mysterious thing. He chooses to place things with his fingers and move them from side to side with his fingers vs. actually using his tongue to manipulate the foods. He's craving oral stimulation constantly. We've introduced harder items to him, such as the P chew, harder versions of thera-tubing, and theraband. His z-vibe broke and I'm anxious to get his new one. So much of his organization comes from oral awareness.
-AJ's been having gihugic (I love cooky words) growth spurts throughout the summer. I felt the need to schedule a "check-in" with his physical therapist. She said he looks really good, is fully mobile, and is self-correcting. Music to my ears. His left foot is turning in considerably, but not from his hip like it usually does. He's turning in from his tibia down. We're taping his foot with Kinescio tape. All the years we've used Kinescio, we've never taped his foot with it, so I wasn't sure how to do it. What a difference it makes. I also fixed his left shoe, which has Velcro that doesn't get along with his AFO orthotic. It constantly kept coming loose. I attached some extra Velcro, one sticky and one soft strip, to the existing Velcro strap on the shoe and presto! It worked like a charm. Because he wears orthotics, he looses out on the natural sensory input your foot has when you walk. Ok, to keep his foot straight and maintain balance, we take away some sensory. Such is life. Back to his PT's thoughts, she literally looked at me and said, "Why are you here? He's doing fantastic. And I am not taking him back on my service." Ok then. She calmed my fears, as always. In order to keep avoiding surgery, which is always our goal, we are doing soft tissue massage on his calf muscles and his foot especially. His plantar fascia is very active. We also do the foot wiggle, which consists of holding the sides of his foot and, wiggling rapidly.
-We had a playset built in our yard for the big boy himself. The look on his face when he saw it was PRICELESS. We added a rock climbing ramp to provide nature physical therapy. We are sneaky parents like that. He's going down the slide himself, which gets quite a bit of speed! He climbs up and down the ladder on his own and balances himself on the swings like a pro. He's an amazing little man. Having the set in our yard also helps keep him occupied. Since he's not the kid who will watch a tv show or sit and read and pretend play, this gives him something to focus on AND enjoy. We love it!
-I'm still taking courses to earn my BA in English. I'm 15 classes into my program. My original date of graduation was September 2013, but now it is December 2013. I had to add two classes to my schedule to fulfill the program requirements. I had to get to a certain point of the program to choose the classes I wanted to take. Summer has proved to be quite difficult trying to balance having AJ home and doing course work. Steady wins the race, right?
-AJ had a petit mal seizure last week after waking up from school. While my intial "in the moment" reactions to them are improving (which-I'm not sure if that is a good or bad thing) the after effect is what drains me. We went to a concert that night and I was just drained. Having fun? Sure. But if you looked at me I looked bored out my gourd. All in all, he's been doing well. He does have clusters of absent seizures, and I think he knows when they are coming on. Sometimes he's upset about it, other times he just comes back like flipping a switch. His little sad face is so heartbreaking. Buddy, if I could make them go away, I would. Believe me.
-AJ qualified for Family Support Program funds again this year. I made our home study visit appointment this week and am preparing everything we'll need to submit. We always seem to qualify when changes are about to be made. I'm not sure how we do that. Our plan is to have sidewalk in front of the house redone and widened a bit. New regulations regarding what the program will pay for are coming down from the state level. Our coordinator advised us to gather as much information as possible to "prove" that AJ needs this walkway. Despite this, we are ever grateful that he qualified for funding again.
-AJ continues to use his iPad for communication. Two weeks ago we had his iPad in church and he kept hitting the home button to exit from the menu or app that was up and clearly he didn't care for. Jeremy and I were thrilled! He shocked me when we were in Iowa by turning it on with the home button all by himself!! Wahoo! We have specific goals in his IEP related to his iPad and he just aced one of them! During summer school AJ was asked to listen to a musical instrument and then choose from three images of the instruments on his iPad. This little boy amazes me.
The SLP that evaluated him at the development center suggested using ABA flash card apps. AJ learns best by rote practice and let me tell you, these apps are awesome. There are different categories, such as emotions, foods, sports, actions, vehicles, animals, etc. She also gave me a mega list of apps that she a colleague put together, as well as a list the center hands out. One of these days I will dedicate a post to the 'ol iPad and all its awesomeness.
-A friend told me about the COOLEST APP EVER. Ok, maybe not the coolest, but it sure is informative for Jeremy and I as non-cochlear implant users. There are several apps that have a dB meter. Yes, I know this is awesome. The app is Decibel 10. I am seriously disturbed by how loud our world is. Despite this, I find this app amazingly helpful. AJ has been having a seriously hard time with his cochlear implants. This app is helping immensely as I can identify what range of sound bothers him and what he can tolerate. I'm anxious to take it to school and use the app in the school environment.
-Jeremy and I participated in our church's Believer's Baptism in the lake. What.An.Incredible.Experience. I really don't have words other than it was an amazing experience and I am so grateful we made the decision to be baptized.
-I've been participating in a women's bible study. The study is appropriately called "Stuck". The ladies in my group are all amazing women. Next week is our last week and I am incredibly sad that we won't be meeting anymore. We've followed this study and I've become a new woman because of it. Truly. As much as I am looking forward to meeting other peeps with the fall groups form, I am sad. Each week we've done a "Chica of the Week". Each of us writes a prayer request and we pick cards from a basket. You are to encourage and pray for your chica that week. I absolutely love this idea. I love sending encouragement and well wishes to my chica, and love receiving prayers and encouragement from whomever has me as their chica that week. Sigh. What I learned? I am not alone in my place of stuck.
-AJ is scheduled for a follow-up with his physical medicine doctor, a cochlear implant mapping, and an appt with his neurolgist within the next two weeks. He is also scheduled for a genetics consult and a consult with the skin surgeon regarding his head scar.
Is that it? I think so. All in all, AJ is doing great. Thanks for checking in here on the 'ol blog. She won't be neglected anymore. Promise. Ok, I promise I'll try.
Sunday, June 17, 2012
Helpless
Tonight, after Jeremy gave AJ a bath and he was snuggled in his bed, I went in his room to kiss him goodnight.
It was then that I recognized that stare. The seizure stare. I waited, and saw the drool. I dropped to the floor and watched my little boy stare into space and held his hand. This one was about a minute. A minute that felt like an eternity. I sat and cried silent tears while I watched my little boy seize. I watched him intensely waiting for my little boy to come back. And he did. With a big smile and a hug. Thank God.
Tonight is one of those nights that I feel so helpless. We do everything we can for AJ, but this is one area we simply cannot do anything for.
No mother should ever have to watch their child suffer-in any way shape or form. Watching my child seize is torture to me. Pure torture. I try my best to be strong for him and comfort him. Even if he's still, I want him to know I'm there. His seizure activity has been off and on recently. I really hope it goes off for a while.
No mother should ever have to watch their child suffer-in any way shape or form. Watching my child seize is torture to me. Pure torture. I try my best to be strong for him and comfort him. Even if he's still, I want him to know I'm there. His seizure activity has been off and on recently. I really hope it goes off for a while.
I still don't understand why AJ's epilepsy is the hardest thing for me to handle. Of all the things he has going on, I can't get over the epilepsy. I worry about more brain damage. Sometimes, I even get scared that some day the seizures will be uncontrollable and will take him from us. Tomorrow, I will call his neurologist's office. To which the nurse will talk to me for a ridiculously long amount of time and talk me through everything epilepsy. It will probably lead to another visit, a blood draw, and maybe another EEG. All of which I hate. Perhaps it won't. She'll remind me that breakthrough seizures do happen. They are controlled most of the time, but sometimes one slips through. Was he drowsy? Yes. Then you know the most common time for seizures is drowsiness and during sleep. Yes, yes I know. Is he growing? Yes, like a weed. Well, then?.... I know, I know.
I'll be checking on him a lot tonight and am already anxious for his amazing morning smile.
Saturday, June 16, 2012
Special Needs Family Support Group
A few months ago I had ants in my pants about the fact that there aren't any special needs support groups in our area. After speaking to a few different contacts in the special needs world I learned that most groups fizzled out a few years ago. Lovely. I was done searching and moved on to "Well, I start one then. So there!"
So, I contacted a friend at church and asked if we could start a group there. This is one of those moments where the stars aligned just perfectly. She told me another church member and her husband were just organizing and planning such a group.
We've been meeting for a few months now and its been absolutely wonderful. We've met some awesome people and formed some great friendships. It is the most amazing feeling when I say a phrase or acronym and do not have to explain it. To have another parent understand how a special needs bad day is different than just a bad day. To vent and have someone actually get it. We laugh, we cry, we support one another. We share resources. We opened new doors.
Did I mention how great this is?
Jer and I learned quickly that we're sort of veterans in the special needs world. While AJ is still young, we've been around the block and then some. I've said it before, but a little tiny piece of my heart heals each time I am able to use the knowledge we've gained from our experiences with AJ to help someone else.
Hooray!
So, I contacted a friend at church and asked if we could start a group there. This is one of those moments where the stars aligned just perfectly. She told me another church member and her husband were just organizing and planning such a group.
We've been meeting for a few months now and its been absolutely wonderful. We've met some awesome people and formed some great friendships. It is the most amazing feeling when I say a phrase or acronym and do not have to explain it. To have another parent understand how a special needs bad day is different than just a bad day. To vent and have someone actually get it. We laugh, we cry, we support one another. We share resources. We opened new doors.
Did I mention how great this is?
Jer and I learned quickly that we're sort of veterans in the special needs world. While AJ is still young, we've been around the block and then some. I've said it before, but a little tiny piece of my heart heals each time I am able to use the knowledge we've gained from our experiences with AJ to help someone else.
Hooray!
Sunday, April 22, 2012
Valentine's and Easter
Valentine's is like speed to me. I get all excited about making rock star valentines for AJ to take to school.
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AJ attended church for the first time hearing (back in December we took him for Christmas but later found out his processors weren't working then so it wasn't such an accomplishment then) on Easter. He did very well and even signed more for the lights after the music was over. It was seriously cute. For Easter dinner, he wasn't the least bit interested in eating, he only wanted a freeze pop. He proceeded to entertain us with that one freeze pop for at least a half hour. He then devoured several pieces of Irish Cream Pie.
This year, not only could I find the perfect valentine for us to make, we also ran out of time. So, I had to simplify. We came up with this:
I stamped the greeting and wrote his name and he put the stickers on. He absolutely loves playing games with stickers. Put them on your nose and he'll find them in no time at all. And, of course, it is a great OT activity. I heard from the kindergarten teacher that the kids all loved them. Sometimes I think AJ could have given his classmates bags of pebbles and they would have been over the moon. Our little guy sure has his own fan club.
I made these for AJ's school staff, courtesy of Pinterest:
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For Easter, the Easter Bunny forgot-ok-has no idea where his basket is. I saw a cute idea (again, on Pinterest) to dye eggs using koolaid packets instead of the 'ol vinegar and color tablets. Yeah, good intentions. And then I got to thinking about what the Easter Bunny should bring AJ....
He brought all his favorites: Freeze pops, glow sticks to play with in the bathtub,
sour straws, and a light-up yoyo.
We've settled into a groove where I no longer feel the stress of having to have holidays a certain way.
We do what works and enjoy every moment of it.
Sunday, April 15, 2012
Sharing
I have so much to share. As usual, I'm behind on the blog. What happened to posting every day? Yeah. Not so much.
Tonight we had the privilege of sharing our family's story with our special needs group.
Our what? Yeah, I haven't shared about that-but I will.
Our group is devoting the first 15 minutes of each meeting to focusing on a particular family. We paved the way tonight, sharing our family's story first. It has been quite a while since we've shared our story. But there was something very different this time. We went from the beginning to now, spanning almost 5 years. We had AJ in the meeting in the beginning to show everyone who he is now. Then, we shared our story. I think it really helped the group, and us as his parents, to see how far he really has come.
The purpose was to share our history and share our child's strengths. And sharing the things "they" said he'd never do and is now doing. AJ's determination slapped me in the face as I was speaking. He doesn't know he's any different than anyone else. We all love the same, don't we? He's determined. The most determined person I've ever known. If he can be that determined, then we can be that determined to keep advocating for him the very best we can.
Tonight we had the privilege of sharing our family's story with our special needs group.
Our what? Yeah, I haven't shared about that-but I will.
Our group is devoting the first 15 minutes of each meeting to focusing on a particular family. We paved the way tonight, sharing our family's story first. It has been quite a while since we've shared our story. But there was something very different this time. We went from the beginning to now, spanning almost 5 years. We had AJ in the meeting in the beginning to show everyone who he is now. Then, we shared our story. I think it really helped the group, and us as his parents, to see how far he really has come.
The purpose was to share our history and share our child's strengths. And sharing the things "they" said he'd never do and is now doing. AJ's determination slapped me in the face as I was speaking. He doesn't know he's any different than anyone else. We all love the same, don't we? He's determined. The most determined person I've ever known. If he can be that determined, then we can be that determined to keep advocating for him the very best we can.
Thursday, March 8, 2012
Cooking for 1
Or should I say cooking for 1, the 1 army-sized eating machine that is my son?
Jeremy and I joke a lot about how much AJ eats, but in all honesty we are tremendously grateful that he is such a great eater.
Tonight's featured dish?
Spinach and ricotta tortellini with homemade marinara sauce.
I'm no Martha or Food Network guru, but lately I've been challenging myself to go a bit healthier with AJ's diet. While the kid has an all-you-can-eat pass to whatever he wants because he's so little, that doesn't change the ingredients of those golden arch chicken nuggets that are now ingrained in my brain. Ew.
AJ eats anything and everything. The amount he eats literally astonishes people. If he doesn't like something, it is probably due to an oral issue or texture he is unsure about. But it makes me happy to see him eat mini trees of broccoli and kidney beans. If he doesn't want broccoli in that form, he'll eat it in soup the next day. And not wanting it doesn't mean he won't eat it ever. It means just not today or for this meal. I was not surprised when school reported that he loved red beans and rice with hot sauce for lunch a few weeks ago.
I'm on the hunt to find more healthy fats, different proteins, and creative ways to get calcium into his body. He's still taking those gummy vitamins, but they still haven't magically include calcium or anything else that should be in them-in them.
After a long appointment today, I ran through Starbucks to grab him a cookie and water. He ate the whole cookie. I thought to myself, who is that little man chompin' away back there? It's the same little dude who didn't know what a spoon was.
How far we've come.
I think the cookie thing will be a tradition for appointments at the hospital. And maybe, just maybe, Mom will get herself a delicious coffee concoction too. Way to go AJ, Mommy is proud of you!
Jeremy and I joke a lot about how much AJ eats, but in all honesty we are tremendously grateful that he is such a great eater.
Tonight's featured dish?
Spinach and ricotta tortellini with homemade marinara sauce.
I'm no Martha or Food Network guru, but lately I've been challenging myself to go a bit healthier with AJ's diet. While the kid has an all-you-can-eat pass to whatever he wants because he's so little, that doesn't change the ingredients of those golden arch chicken nuggets that are now ingrained in my brain. Ew.
AJ eats anything and everything. The amount he eats literally astonishes people. If he doesn't like something, it is probably due to an oral issue or texture he is unsure about. But it makes me happy to see him eat mini trees of broccoli and kidney beans. If he doesn't want broccoli in that form, he'll eat it in soup the next day. And not wanting it doesn't mean he won't eat it ever. It means just not today or for this meal. I was not surprised when school reported that he loved red beans and rice with hot sauce for lunch a few weeks ago.
I'm on the hunt to find more healthy fats, different proteins, and creative ways to get calcium into his body. He's still taking those gummy vitamins, but they still haven't magically include calcium or anything else that should be in them-in them.
After a long appointment today, I ran through Starbucks to grab him a cookie and water. He ate the whole cookie. I thought to myself, who is that little man chompin' away back there? It's the same little dude who didn't know what a spoon was.
How far we've come.
I think the cookie thing will be a tradition for appointments at the hospital. And maybe, just maybe, Mom will get herself a delicious coffee concoction too. Way to go AJ, Mommy is proud of you!
Wednesday, February 29, 2012
Finding the Sunshine
I woke up this morning, clearly on the wrong side of the bed. I haven't been sleeping well recently. Which may not be surprising, but to me it was since I was on a "great night of sleep" streak for about six weeks.
I growled out of bed, got ready and heard what sounded like blocks tumbling down the wall. "AJ's up," I announced. I walked in to see a smirk-faced boy sitting on the floor amidst a million puzzle pieces and the container they go in-on top of his head.
We commenced the morning routine, which currently includes three medications. His seizure medicine goes down with ease. I'm the luckiest Mom on the planet that this kid has no qualms about taking medicine everyday. Twice a day. The second medicine and its mondo syringe to dispense it is met with minor whining from AJ and anxiety from me. I prep the mondo syringe with his antibiotics and prep a small syringe with his favorite-Tylenol. He loves Tylenol and Motrin. "This first, then this one, " I say. I give him the antibiotic one mL at a time, slowly counting down how many we have left. "All Done!" I exclaim. He swallows, then giggles as I pick up the syringe with the red cherry goodness.
AJ plows through his oatmeal and downs his milk. I groan noticing the oatmeal on every inch of his pajamas, face, and hands. If there is anything that I hate cleaning up, it is definitely oatmeal. He successfully wears his cochlear implants for a full five minutes before flipping a coil off as I am putting his braces and shoes on. I lose it. Tears, begging sweetly to be a good boy and wear his ears. While we make our way down the stairs for "the morning swing" he enables his shoulder to rub off the other coil. I watch the time closely while he swings, take him to the bathroom, and come upstairs. He commences the giggle-fest that has somehow become routine when putting on his jacket. It makes rushing nearly impossible and makes getting his jacket on even more impossible. We get to the driveway where he corkscrews, I let him fall, and he laughs. Some days he sits, today I was thankful he stood back up.
As we drive to school I watch him like a hawk in the "AJ mirror" attached to my visor. We arrive at school, where he flips a coil off as we walk in the door. I get in the car and feel the uncontrollable tears coming. I pull out and turn left onto a different street so I am not the mom in her car bawling in front of school.
By the time I arrive home I am no longer crying. The worries? They linger. The thoughts start running on their hamster wheel. School is not going well. We're four days post double ear infection diagnosis. His ears are fine. He's been "hearing" for a month after a ridiculous hiatus for who knows how long, this was not what we needed. Oh, I have to write that appointment in my calendar. How long will this last? I have to get him back in the pool. When is he supposed to see Dr. M? Make a plan for spring break. Schedule therapies for spring break...
The sun suddenly breaks through the clouds and I can feel its warmth through the window. I run around the house, opening the blinds and windows. How bright it is when light is allowed to shine in! I go outside and spend some time with the pooch and his Frisbee. He is happy, I am warm and suddenly feel better.
I find myself all to often wrapped up in the special needs that have special needs in our life as a family. It consumes a massive amount of time. And a lot of my own personal energy. I don't like to drag through a day but sometimes I do. Raising a child with special needs is different than raising a typical child. Until you do it, you really don't know or understand. I have wasted plenty of precious energy on trying to convey that message. I am needed more. I am needed in different ways. We are needed, often, indefinitely. You give more of yourself to your child than you ever dreamed possible. And yes, in a different way than parents just give themselves to their children. I'm not discrediting you typical parents out there. No, I am simply stating that my role as a parent is different.
Trapped under the fine print that comes with having a special needs child, I don't often see the sunshine. His needs-sometimes they make me angry. AJ doesn't. The needs do. The compound idea surrounding special needs can drag you down. I spend so much emotional and mental energy on what my child has needed/needs/is going to need that my physical energy suffers for it and I'm often a mess when my husband comes home. I'm thankful its not every day, but recently, yeah. It's happened a lot.
Time is precious. And while I cannot force or rush my child, I don't want to waste time either. I've had little bits of sunshine creep in here and there. I love his morning smile and his excitement during baths. I love how he cuddles me now, when for years I prayed he would do just that. I hate how tired and frustrated I am at times and how the first thought in my head is often therapy related vs. ice cream date with my son related.
I know too much to enjoy him sometimes. That makes me sad. I'm not an expert on cochlear implants or cerebral palsy or anything else he has going on. AJ is a special needs jambalaya. I need to know a lot in different areas, which is often frustrating to me. I feel like I have no focus. In essence, I do. AJ is my focus. But when it comes to his needs, its multiple choice.
Spring might just become my new favorite season. I'm not sure. I'm sure fall will suck me back in with its apples, pumpkins, and crisp weather. But for now, I'm welcoming Spring. Spring's rebirth and renewal. Spring's sunshine.
I growled out of bed, got ready and heard what sounded like blocks tumbling down the wall. "AJ's up," I announced. I walked in to see a smirk-faced boy sitting on the floor amidst a million puzzle pieces and the container they go in-on top of his head.
We commenced the morning routine, which currently includes three medications. His seizure medicine goes down with ease. I'm the luckiest Mom on the planet that this kid has no qualms about taking medicine everyday. Twice a day. The second medicine and its mondo syringe to dispense it is met with minor whining from AJ and anxiety from me. I prep the mondo syringe with his antibiotics and prep a small syringe with his favorite-Tylenol. He loves Tylenol and Motrin. "This first, then this one, " I say. I give him the antibiotic one mL at a time, slowly counting down how many we have left. "All Done!" I exclaim. He swallows, then giggles as I pick up the syringe with the red cherry goodness.
AJ plows through his oatmeal and downs his milk. I groan noticing the oatmeal on every inch of his pajamas, face, and hands. If there is anything that I hate cleaning up, it is definitely oatmeal. He successfully wears his cochlear implants for a full five minutes before flipping a coil off as I am putting his braces and shoes on. I lose it. Tears, begging sweetly to be a good boy and wear his ears. While we make our way down the stairs for "the morning swing" he enables his shoulder to rub off the other coil. I watch the time closely while he swings, take him to the bathroom, and come upstairs. He commences the giggle-fest that has somehow become routine when putting on his jacket. It makes rushing nearly impossible and makes getting his jacket on even more impossible. We get to the driveway where he corkscrews, I let him fall, and he laughs. Some days he sits, today I was thankful he stood back up.
As we drive to school I watch him like a hawk in the "AJ mirror" attached to my visor. We arrive at school, where he flips a coil off as we walk in the door. I get in the car and feel the uncontrollable tears coming. I pull out and turn left onto a different street so I am not the mom in her car bawling in front of school.
By the time I arrive home I am no longer crying. The worries? They linger. The thoughts start running on their hamster wheel. School is not going well. We're four days post double ear infection diagnosis. His ears are fine. He's been "hearing" for a month after a ridiculous hiatus for who knows how long, this was not what we needed. Oh, I have to write that appointment in my calendar. How long will this last? I have to get him back in the pool. When is he supposed to see Dr. M? Make a plan for spring break. Schedule therapies for spring break...
The sun suddenly breaks through the clouds and I can feel its warmth through the window. I run around the house, opening the blinds and windows. How bright it is when light is allowed to shine in! I go outside and spend some time with the pooch and his Frisbee. He is happy, I am warm and suddenly feel better.
I find myself all to often wrapped up in the special needs that have special needs in our life as a family. It consumes a massive amount of time. And a lot of my own personal energy. I don't like to drag through a day but sometimes I do. Raising a child with special needs is different than raising a typical child. Until you do it, you really don't know or understand. I have wasted plenty of precious energy on trying to convey that message. I am needed more. I am needed in different ways. We are needed, often, indefinitely. You give more of yourself to your child than you ever dreamed possible. And yes, in a different way than parents just give themselves to their children. I'm not discrediting you typical parents out there. No, I am simply stating that my role as a parent is different.
Trapped under the fine print that comes with having a special needs child, I don't often see the sunshine. His needs-sometimes they make me angry. AJ doesn't. The needs do. The compound idea surrounding special needs can drag you down. I spend so much emotional and mental energy on what my child has needed/needs/is going to need that my physical energy suffers for it and I'm often a mess when my husband comes home. I'm thankful its not every day, but recently, yeah. It's happened a lot.
Time is precious. And while I cannot force or rush my child, I don't want to waste time either. I've had little bits of sunshine creep in here and there. I love his morning smile and his excitement during baths. I love how he cuddles me now, when for years I prayed he would do just that. I hate how tired and frustrated I am at times and how the first thought in my head is often therapy related vs. ice cream date with my son related.
I know too much to enjoy him sometimes. That makes me sad. I'm not an expert on cochlear implants or cerebral palsy or anything else he has going on. AJ is a special needs jambalaya. I need to know a lot in different areas, which is often frustrating to me. I feel like I have no focus. In essence, I do. AJ is my focus. But when it comes to his needs, its multiple choice.
Spring might just become my new favorite season. I'm not sure. I'm sure fall will suck me back in with its apples, pumpkins, and crisp weather. But for now, I'm welcoming Spring. Spring's rebirth and renewal. Spring's sunshine.
Tuesday, January 31, 2012
The Resilient Men in My Life
Today was one of those days I anticipated to be emotionally draining right off the bat.
Somehow, the day decided to out-do itself and went above and beyond the call of emotional duty.
First up, an appointment with AJ's cochlear implant team. We decided to try the ESRT test a few electrodes at a time without sleep deprivation or anesthesia. Amazingly, between five adults and AJ we managed to achieve the ESRT! A new program was created from the results. (I will do a separate post explaining more)
And then.
We figured out his processors have been switched. Meaning, he hasn't been stimulated. As in -NOT HEARING A DARN THING. Cochlear implants now have this "safety/non-freak out" feature. The processor only works with one side and is programmed so that it will not work on the opposite side. Can you imagine wearing a completely different program on the wrong side? Ouch.
I have no idea how this happened, and it really doesn't matter. What matters is that we make sure the mistake is not made again. I'll be using the remote to test each morning to make sure we're copacetic.
My heart literally dropped the floor and I could not control my tears, not matter how hard tried. This was the last thing we needed. (How many times have I said that?) I started questioning things, so that's why he's not turning to his name, etc. All things you see in hindsight. It bothers me that I don't know how long he's been "off-line". When we put his implants on he freaked. He wore one home and when I tried two, he screamed and I got sick. Lovely. I felt so overwhelmed that we were in a broad sense, starting over. I can't stop his life to help him adjust-the world is a loud place!
After lunch, we went to downstairs to swing and he tolerated two just fine. The pattern I found today was that he was fine for a while and then just needed a break. He then tolerated them again...for a while. This is progress.
A few hours later, we ran over to the neurologist's for a quick, painless visit. We came home, ate dinner and listened to Pandora.
And he was happy. Gee whiz, kid. How do you do it? As he giggled with intense excitement over the fact it was bathtime, I felt amazed by my little dude. How.does.he.do.it. So resilient. He's always been that way. He has such an incredible aura about him. He inspires me to keep going. If his little body and mind can do it, than I can at least try, if not do it along with him. His smile is like an etch-a-sketch. Really.
During AJ's first appointment, my foot fell asleep. We were all sitting on the floor and I felt my foot fall. When I attempted to get up at the end of the testing my left lower extremity was completely asleep. In a very deep, odd way. It scared me. I tried to walk and it was this really weird feeling. Not that funny, ha-ha my foot fell asleep feeling.
And I thought, Oh My God. My sweet husband has this happen without notice. I was humbled. His MS has been playing games recently, which.... Has thrown us for a loop. We were blessed with a full year without symptoms. Although his recent MRI was stable, with no new lesions or activity, there are still some not-so-fun things happening. With no rhyme or reason. Which is incredibly frustrating. So, I took my tiny glimpse into his fight and tried to understand all that I could. So that I can be the best support I can for him. I can't explain how helpless we feel sometimes with all we've been given. Its just a fact.
My husband is resilient too, you see. And for that, I love him more than words can express. He knows. I know. And we move forward. I move forward with the strongest men I've known; the two resilient men in my life.
Somehow, the day decided to out-do itself and went above and beyond the call of emotional duty.
First up, an appointment with AJ's cochlear implant team. We decided to try the ESRT test a few electrodes at a time without sleep deprivation or anesthesia. Amazingly, between five adults and AJ we managed to achieve the ESRT! A new program was created from the results. (I will do a separate post explaining more)
And then.
We figured out his processors have been switched. Meaning, he hasn't been stimulated. As in -NOT HEARING A DARN THING. Cochlear implants now have this "safety/non-freak out" feature. The processor only works with one side and is programmed so that it will not work on the opposite side. Can you imagine wearing a completely different program on the wrong side? Ouch.
I have no idea how this happened, and it really doesn't matter. What matters is that we make sure the mistake is not made again. I'll be using the remote to test each morning to make sure we're copacetic.
My heart literally dropped the floor and I could not control my tears, not matter how hard tried. This was the last thing we needed. (How many times have I said that?) I started questioning things, so that's why he's not turning to his name, etc. All things you see in hindsight. It bothers me that I don't know how long he's been "off-line". When we put his implants on he freaked. He wore one home and when I tried two, he screamed and I got sick. Lovely. I felt so overwhelmed that we were in a broad sense, starting over. I can't stop his life to help him adjust-the world is a loud place!
After lunch, we went to downstairs to swing and he tolerated two just fine. The pattern I found today was that he was fine for a while and then just needed a break. He then tolerated them again...for a while. This is progress.
A few hours later, we ran over to the neurologist's for a quick, painless visit. We came home, ate dinner and listened to Pandora.
And he was happy. Gee whiz, kid. How do you do it? As he giggled with intense excitement over the fact it was bathtime, I felt amazed by my little dude. How.does.he.do.it. So resilient. He's always been that way. He has such an incredible aura about him. He inspires me to keep going. If his little body and mind can do it, than I can at least try, if not do it along with him. His smile is like an etch-a-sketch. Really.
During AJ's first appointment, my foot fell asleep. We were all sitting on the floor and I felt my foot fall. When I attempted to get up at the end of the testing my left lower extremity was completely asleep. In a very deep, odd way. It scared me. I tried to walk and it was this really weird feeling. Not that funny, ha-ha my foot fell asleep feeling.
And I thought, Oh My God. My sweet husband has this happen without notice. I was humbled. His MS has been playing games recently, which.... Has thrown us for a loop. We were blessed with a full year without symptoms. Although his recent MRI was stable, with no new lesions or activity, there are still some not-so-fun things happening. With no rhyme or reason. Which is incredibly frustrating. So, I took my tiny glimpse into his fight and tried to understand all that I could. So that I can be the best support I can for him. I can't explain how helpless we feel sometimes with all we've been given. Its just a fact.
My husband is resilient too, you see. And for that, I love him more than words can express. He knows. I know. And we move forward. I move forward with the strongest men I've known; the two resilient men in my life.
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