Sunday, December 28, 2014
Caden’s first dentist appointment was about 5 years ago, and to say it was horrific would be an understatement. It took 4 of us to hold him down long enough for the dentist to pronounce we weren't cleaning his teeth well enough and that he felt holding him down was less trauma than the impact of not getting his teeth clean enough. I disagreed with all my being because I knew that in time Caden could and would learn that brushing his teeth was a safe activity, but if we used the hold’em down method he would only learn fear and we’d never make progress. So we didn’t go back to that particular dentist, and we continued to follow our gut instinct. Although we continue to help him brush his teeth, he now brushes twice a day without argument. Best yet, he was able to sit in the dental chair by himself and get his teeth checked and cleaned without a single argument or tear. I on the other hand sat at the bottom of his chair with Elf and fought back proud tears of how far he had come in such a short time. Yet, in that short time, I know how hard he has worked and continues to every day. Honestly, he has come farther in the dental world than I have; I still struggle to the point of tears every time the dentist is mentioned due to my own dental phobia. Even taking the kids to their dental appointments is difficult for me. He’s truly my hero, and I am realizing how much I need to learn from him in regards to overcoming my fears.
Later that day, Caden, Elf, and I headed to the doctor to investigate some ongoing stomach pain. I expected a quick exam and out so that’s all I had really prepared Caden for. He was already claiming it was the worst day ever because he had to go to the dentist and the doctor, but little did either of us know that the worst was yet to come. The doctor decided to order bloodwork and x-rays. We weren't prepared for bloodwork so we didn't have any emla (numbing) cream with us nor any of Caden’s usual needle comforts. He walked back to the bench though and proclaimed that he wanted the needle put in slow and that he was watching his Ipad, and that’s exactly what he did. There wasn't a single tear shed and no one had to hold him down. I would have been over the moon at that point, but then the phlebologist have asked Caden what grade he was in. He replied 2nd, and again I was doing a mental happy dance because he was appropriately responding while getting his blood drawn with no tears and no one holding him down. The tech, however, decided to state over and over again that 2nd grade didn’t make sense for an 8 year old; she proclaimed rather forcefully that he should be in 3rd grade. I was fighting back tears and an overwhelming desire to punch her because I didn't want to have to remind Caden that he stayed in Kindergarten a second year because it was such an emotional experience for him. Caden however never missed a beat and replied I stayed in Kindergarten an extra year because my teacher Miss J needed a special helper with the little kids. Never ever take for granted what a lasting impact teachers can have on your child. I've never been more grateful for Miss J and all of the teachers out there who work so hard to remind our kids how special they truly are.
The day kind of spiraled for me from that point. First the x-ray technician refused to believe that service dogs were for anything but the blind. I had had enough by that point, and rather calmly but forcefully recited the ADA law to her and gave her a quick and dirty education on autism service dogs. Needless to say, she let us stay in the room for the x-ray although we stepped behind the shield to protect Elf from exposure. Once again, Caden amazed me by laying still, not freaking out when the technician had to position him, and handled it all without a single tear.
Before we were able to exit the hospital, we had one more incident. Elf and I walked out the regular doors, but Caden wanted to take the roundabout door. He got stuck and scared and neither of us knew what to do. The volunteers and security guards just stood there and watched; thankfully, a kind woman walked into the next section of the roundabout and got the door moving again so that Caden could exit. Afterwards, though, all he said was well that was an adventure.
Don’t get me wrong we still have our challenges every-single-day. The countdown to Christmas was almost more than he could handle as positive anxiety is just as hard as negative anxiety for him in many regards. We are back to starting out on the living room floor (a place he has always felt safe sleeping) and then moving him to either our bedroom floor or his own bedroom later in the evening. He’s struggling with a few things in school like how to expand on descriptions (a process that he says makes his brain hurt) when he’d rather have a literal straight forward short but sweet description, and the re-introduction of cursive isn’t any more successful than when we first tried it. And I’m sure there are dozens of other things I could list here. But the thing is that he continues to face his challenges with the smile and giggle that only my giggle monster could do. He finds the funny in the day, and he finds a way to have fun every day. Sometimes he has to ask to go to his room to “find his emotions” and other times he asks us for help. Sometimes he spins for a while, and other times he dances until he feels better. You know though, I've realized that sometimes sitting in my chair at work and spinning does relieve some of the stress and that dancing does make you smile so maybe he is onto something here. I think once again he has proven that I have as much, if not more, to learn from him than I will ever be able to teach him and I’m good with that. I can't imagine a better teacher to open my eyes to the world than my blue-eyed giggle monster.
Wednesday, November 12, 2014
Sayre was placed in my arms on July 28th, and we arrived back in Chicago on August 8th. Honestly, it hasn’t been the fairy tale that I imagined; some days I’ve wondered what I did to my “perfect” family, some days I’ve wondered if I really can/do love my newest little boy, and some days I’ve wondered how in the heck we are going to survive this newest adjustment. At times, that is all terrifying and overwhelming, and then there are those little moments---a hug, a kiss, a sweet little voice calling “mommy” that remind me there’s no other journey that I’d rather be on.
Honestly, in some ways, it reminds me of the moments/days/weeks that followed Ryley’s diagnosis with CVID. As she was being labeled failure-to-thrive and I was being told that she wouldn’t live past her 5th birthday, I wondered if she would ever get to do normal things and just enjoy her life. The horrible days are still present every once in a while and the fears are never far from mind, but all the negativity is tempered by moments like the day after we returned home from China and she celebrated her 14th birthday, learning that she was named dance team captain this year, and watching her start to wrestle with “life” decisions like college. (She is currently thinking about going someplace warm; meanwhile I am wondering if I can get sabbatical for 4 years to stalk her since I can’t imagine my baby girl being so far from me. Thankfully I still have a few years to adjust to that notion.)
It also reminds me of the moments/days/weeks that followed Caden’s diagnosis with Autism. I worried over the lack of services, if he’d ever be able to attend school, and if he would have anyone to call friend. I still wake up in the middle of night worried about bullying and how he will cope in this world with his sensitive nature. Once again, though, the fears and difficulties are tempered by the beautiful moments: listening to him read the titles of songs off the TV station while he is going to sleep, watching his eyes light up when his friend walks in the door for a play-date, or seeing what a kind and caring big brother he has become to Sayre.
See that’s the thing about the kids. They have accepted Sayre into our family, as their brother, since moment one. There’s never been any hesitation, doubt, or fear over their feelings or how he came to be a part of our family. Caden gets so excited when he sees or hears something about China because that’s where his baby brother is from. Ryley proudly shows off her brother to her friends without hesitation over the fact he looks different or has some physical challenges (arthrogryposis, wind-blown hands, and bi-lateral club feet). I don’t think they are in denial over the challenges ahead, but they are living the journey and know that the road is filled with ups and downs and twists all around.
Adoption, like being a special needs family, isn’t always easy. Sometimes the challenges seem insurmountable and the smallest thing sets off tears. And then just before all turns dark, there’s one of the moments that make it all worth it. Sometimes it is a silly moment—Sayre wanting to play with Caden’s clothes even if Caden isn’t ready to take them off and sometimes it is a sweet moment—the boys playing in a laundry basket together or hearing I love you from any one of them. I’ve always said that sometimes the stories are funny and sometimes they are heartbreaking but they are all just a part of Caden’s tale; maybe the reality is that they are all just a part of our story. The thing about our story is that it is ours and even with all of its imperfections, it is the perfect love story for us.
Tuesday, July 22, 2014
After a year of talking about adoption, the time is finally here. On Wednesday, Ryley and I leave for China. We will arrive on Thursday; Sunday we will travel to Sayre’s province and he will be given to us on Monday. The adoption will be finalized on Tuesday, and we will spend the rest of that week finishing up passport paperwork before we travel to the location of the U.S. Embassy for medicals and visa paperwork. We will take a van to Hong Kong on the 8th to catch our flight back to the states. Although I hate being away from my boys, I am so excited that we will be back on the 8th for Dan’s birthday (and our 9th anniversary) and we will all be together on the 9th for Ryley’s BIG 14th birthday. If you have followed my blog for anytime now you know that Ryley and Caden’s birthdays are huge deals in our family. Whenever doctors tell you your children won’t live past a certain age you celebrate each and every “extra” year like crazy!
Having said all of that, I am a nervous, anxious mess about this trip. I have been doing a lot of thinking trying to pinpoint exactly where my nerves are coming from, and I have come to an interesting conclusion. When Caden was diagnosed with autism, we became an autism family. As such, we spend most of our awake time previewing what is going to happen that day, that week, etc. Everyone in our household now speaks in “first, second, then” statements. Other than medical stuff, there aren’t a lot of unknowns in our household or at least we try to prevent/reduce them as much as possible. Predictability is our friend, and along with the super service dog Elf it greatly reduces meltdowns over fear, anxiety, and frustration in our household.
I didn’t realize, though, how much our daily interactions have changed me—I didn’t realize that I started to crave, even need, that level of predictability and control in my own life. While this is creating a lot of unnecessary and unwanted discomfort about the upcoming trip for me and the entire process Ryley and I are about to go through, I think in some ways it is a good experience for me. It is forcing me to live in a little piece of Caden’s world and see the world through his eyes for a short while, and hopefully I can learn from this experience coping techniques that I can then share with him. Maybe, just maybe, this adoption process will make me a better autism mommy. I can’t help but wonder if some of my autism mommy lessons won’t help prepare me for family day with Sayre and all of the feelings (fear, loss of control, lack of language) that he is going to be experiencing. Maybe, just maybe, this entire life is working out exactly the way that it is supposed to be with one event informing other events that we encounter. Maybe it is all really meant to be a part of Caden’s tale.
Wednesday, June 4, 2014
Along with the content material he has learned, he has also learned that sometimes you get the right answer and sometimes you get the wrong answer. Sometimes you are allowed to correct your mistakes and sometimes you just have to accept the grade that you have rightfully earned. We love the concept of correcting mistakes, and whenever that option is given to either of our children by their teachers, there usually isn’t an option---they need to make the best of the opportunity given to them. This is non-negotiable; well, usually.
In Language Arts, Caden had to write a poem. I admit that Dan and I were sweating bullets wondering how Caden would handle this particular assignment. He is a black and white completely literal child; adjectives and adverbs have little place in his vocabulary. A flower is a flower---state the obvious and move on. Caden really wanted to try the assignment, though, and several days later after much blood, sweat, and tears he had a 4 line poem that he couldn’t wait to read to grandma and grandpa on the phone. He showed it to every therapist who walked in the house, and he even memorized the poem that he had written.
I’m sure he was more excited to submit this poem than any other assignment this year, and he asked every-single-day if it was graded yet. When the grade came back, though, his grade was disappointing. In fact, it was one of the lowest grades he earned all year.
During his next teacher phone call, his teacher explained that he hadn’t included enough description and he needed to include more rhyming words. Her criteria were clearly explained, and for all practical purposes he didn’t meet the standard that she had set. From our perspective, it wasn’t an IEP violation as we didn’t request an assignment modification before he began the assignment. There wasn’t anything unfair or discriminatory about the grade; he simply hadn’t been able to demonstrate the skills his teacher needed to evaluate. His teacher, however, knew how much the poem meant to him, and she offered to let him re-do the assignment and she would re-evaluate his grade. As I said before, we have never turned down this type of opportunity for either child before.
And yet this time, with this assignment, we chose not to have Caden rewrite his work nor did we even tell him that it was an option.
Caden willingly shared his poem with anyone who would listen to it; he even memorized it. He worked so hard copying it for the final version because the poem was special to him. In fact, when I complimented him on the poem, he responded by saying, “I am proud of me too mommy.” That statement is worth more than any grade ever will be because it was said with complete genuineness. I think it is hard for anyone to admit that they are proud of something they have created, and it is even harder to maintain that pride when criticized by those around them. Now add to the equation a child who struggles with esteem and anxiety, a child who can’t handle compliments and often sees grades as indicators of academic self-worth. That same child said he was proud of himself and that he liked his poem. Not to sound like a cheesy commercial, but that statement is priceless and represents so much more about this last year than a single grade ever will.
Don’t get me wrong---we get that he needs to work on descriptive language and it is a new school support goal for his therapists to work on this summer. We also realize that at some point we may have to start asking for assignment modifications as he moves into more complex subjects that require a type of thinking that is different from the way his brain operates. But for now, I can’t help but think that possessing those seeds of self-confidence is something so much bigger than any educational or therapy goal that we have ever written or asked for.
[caption id="attachment_328" align="aligncenter" width="300"] This poem is shared with Caden's explicit consent (and he only charged me one dollar).[/caption]
Saturday, May 10, 2014
I expect my role as a mother to continue to evolve with each new stage of my children’s development. I even expect there to be things that I’m not prepared for or aspects that I don’t particularly enjoy. When we made the decision last summer to adopt, I knew that journey would also come with a new definition of whom and what I was as a mother--the mother of an internationally adopted child, the mother of three.
As I start to think, though, about traveling this summer to pick up my adorable little boy, I am faced with the knowledge that I am about to become a part of the history of his mothers. I am struck by the enormity of the privilege and responsibility that I am about to have. I am no longer acting on behalf of simply myself, but I will be representing the triad of his mothers. I have an obligation to convey my honor of his birth mother and what an emotional process it must have been for her to give up her child, either due to familial or societal pressures or maybe it was because she didn’t have access to the resources necessary to provide for his medical needs and knew that leaving him was the best thing she could do for him. I will never be able to let her know how much I love him or how hard I will work to fulfill the hopes and dreams that I’m sure she had for him. My responsibility doesn’t end there, though. There is his foster mother who he has spent the last year or more with. She has given him a place in her family and her heart with the full knowledge and commitment that she would one day hand him over to government officials who would in turn give him to his forever mom. She has watched him learn to sit up, crawl, and take his first steps. She has given him countless bottles and soothed him after bad dreams. I’m sure she has thought of his future and wondered and worried if his forever mom would figure out the little things that comfort him, his favorite foods, and what his fears are.
I can’t promise his mothers that I won’t make mistakes or even that I will learn from my mistakes on the first try. I can’t promise that I will do mothering the way that they would have if he could have stayed with either of them. I can’t even promise that I will always have the answers to the hard questions that he will inevitably ask. I can, however, promise that I will love him with all of my heart, and I will learn how to be the person that he needs me to be. I can promise that I will always speak with honor and respect when he asks those questions about his mothers. I can even promise to keep looking for answers for him although I know they don’t exist. I will always have an open heart and arms for comforting him when inevitably tears fall in grief or anger when he too realizes that no answers exist. I promise not to turn away nor hide my own tears the day that he rages against me for taking him away from his mothers and those answers. I promise that he and I will get through all of this, and we will both be stronger because of it. I promise to be there in the morning, in the afternoon, in the evening, and in the middle of the night even when I need to stay in the shadows because he thinks he is old enough not to need me anymore. I promise to be there when he realizes that you are never too old to need your mother.
And maybe the most important promise that I can make to his other mothers is that I will always love him to the moon and back.
Wednesday, April 30, 2014
I wrote this poem for Caden a few years ago. Maybe it best sums up why I continue to spend so much energy on Autism Awareness each and every April. No matter who or where you are in life, watching your child struggle is difficult. In the moment of those tears and struggles, you don't care about the politics surrounding an official diagnosis or even what official name the struggles are being given. You want, as a parent, to help your child find happiness. Sometimes though the problem is that we are using our own perceptions to define happiness for another person; sometimes finding happiness means trying to look at the world through your child's eyes. There's a time and place for therapy and services but there's also something very real, very necessary, and very special about relating to your child at whatever point they are at in a way that they understand and communicate. I've learned so much about the world since I started trying to see it through Caden's beautiful blue eyes.
Perfect baby boy born one early morn
A smile for his parents
His big sister’s best friend
Perfect boy with piercing blue eyes
That perfect boy did grow
A crawl became a run
A babble soon was the word mum
Perfect boy with piercing blue eyes
On an early morning bright
The words stopped
And the smiles were no more
Perfect boy with piercing blue eyes
With day came fears hidden in the sun’s shadows
And at night the monsters found their way on moon beams
Tears, tears, and more tears
Perfect boy with piercing blue eyes
Days, weeks, and months
The doctor’s fateful decree
Trapped in a lonely world
Perfect boy with piercing blue eyes
That perfect boy did grow
Lines became letters
A gesture or look could say it all
Perfect boy with piercing blue eyes
On an early morning bright
We began to spin, flap, and dance
That boy, his sister, and his parents
Perfect boy with piercing blue eyes
Joined together again
Without a word ever spoken
A smile and lonely no more
Perfect boy with piercing blue eyes
Monday, April 28, 2014
You might know this guest blogger as Calormom on Twitter. She is one of my best friends and I am so honored to be having Tracy Miranda sharing her son's experiences of living on the spectrum. Tracy is a loving mother, wife, school employee, volunteer in her son's classroom, and consultant for Origami Owl.
Don't walk behind me; I may not lead. Don't walk in front of me; I may not follow. Just walk beside me and be my friend. ~Albert Camus
April is always a difficult month. Every year there is a new hope that the autism community will come together and shed new light on our cause. Yet, every year there just seems to be more fighting and less understanding. Pro vaccine vs anti vaccine, awareness vs acceptance and even fighting over the color blue and the puzzle piece. I wanted to write an inspiring piece about how we need to respect each other and how our opinions are our own. I have to believe that no matter who chooses to support what, at the end of the day each parent believes they are doing whatis best for their child. Who am I to argue? I decided instead to write about a different kind of inspiration. My son and his best friends who are changing minds about autism every day.
When we first received Conor's diagnosis it was the month before his third birthday. He had been in early intervention since he was 20 months old due to speech and fine/gross motor delays. He went five days a week for over a year before he received his diagnosis as he was getting ready to transfer into the school district. He was then in a pre-k class for a year and a half. He learned a lot and made big improvements. He spent the first year playing next to the other kids but didn't interact with them much. At recess he would walk the perimeter of the play yard and never try to play a game with other kids. When he became more verbal he could name the kids in his class, but didn't play with them much. There was one exception, a girl named Bella. They often stuck together and tried to play together on play dates. But she was a year older, a little more advanced, and it was obvious he didn't really know how to play yet. He followed her around a lot and it was the first time we saw a connection to another peer. They would hold hands, dance together, run, play and she would try to sneak a kiss now and then. Since she was older, she moved on to kindergarten and they saw less and less of each other. She has since moved out of state so they don't see each other, but they still love seeing each other's pictures and hearing stories about how they are doing.
He had made so much progress in his pre-k class that the next year he transferred to a special day class in our district specifically for high functioning kids with potential to mainstream. It was there that he met the friends that would change his life, Eli and Lilly. Eli had actually been in the same early intervention program as Conor for a few months. However, neither of them had the skills to be friends back then, so it was almost like they were meeting for the first time. After school when we picked the kids up, the other parents and I soon realized this was something special. We planned a couple play dates and the kids always had a blast. We used to marvel at their progress when we watched their friendship blossom. None of them had ever connected to other children like this before.
That first school year, they did so much together. We had more play dates than you can count. They went to the zoo, went on hikes, went to restaurants and went swimming. They went to the pumpkin patch, celebrated Hanukah, Christmas, birthdays and saw the the Easter bunny. All the while, sharing laughs and making memories. Last summer our families went on a weekend vacation together and the kids had the time of their lives. We stayed at a vacation home of a friend of mine. The kids had been talking about having a sleepover and we told them they were a little too young still. This was the best of both worlds. The kids got to dance in their pajamas together and have movie night, yet still sleep in their separate rooms. It was a magical trip.
This past September Conor and Lilly moved on to kindergarten and Eli just missed the age cut off. We were worried that Eli would be devastated that his friends wouldn't be in his class anymore but he has thrived. Conor and Lilly are trying to make new friends but they do struggle. They don't know what to say or how to act. One of Conor's classmates came up to me one day and said "Conor's being mean." I told her that Conor doesn't really know how to be mean and asked what he had done to her. As it turns out, she was upset because he told her she couldn't climb up something and, since she could, she didn't like his remark. All of them have some trouble connecting to their neurotypical peers. If he had said that to Lilly, she would have told him he was wrong, and then shown him. She wouldn't have thought another thing of it. The connection between these three friends is undeniable. There is a level of comfort and understanding they have with each other that can't be duplicated. They all have sweet dispositions and love to be silly. The three of them have made such memories that I know will last a lifetime (and not just because their autism gave them ridiculous memory skills). We still have play dates as often as possible and their bond has never been stronger. We recently went back to see the Easter bunny and it was the first time in a little while that all three of them had been together at the same time. They hugged each other, danced and played, and walked through the mall holding hands.
I wanted to share their story because I want to give hope to those who may need it. Here are three children on the spectrum who are proving people wrong. They have a bond like siblings; they fight and love like brothers and sister. They do love to push each other's buttons and can certainly make each other mad. None of them have siblings of their own, so we feel that's one of the reasons this friendship bond is so strong and important. They are learning that sometimes one of them needs a moment to be alone, and that's ok. They are learning to ask how to help each other when someone is hurt or when they are upset. They have empathy and genuine love for each other. They are learning to share, take turns and compromise. They are learning that time apart doesn't diminish their bond. They are proving that autism doesn't define them. The friendship they have is easy, when so many things in their lives are hard. I love Eli and Lilly as if they were my own kids. I hope this is the beginning of a lifelong friendship. I think they're off to a great start.
Friday, April 25, 2014
Friends listen to what you say. Best friends listen to what you don't say. ~Author Unknown
April…the month of the year that many in the Autism community choose to refocus on what is our individual mission within this spectrum. Some parents/individuals focus on raising awareness. Some focus on acceptance. Some want to go off the radar for a while. Our family chooses to just continue what we do all year long! Give our son the best life we can and help him gain the skills we feel is important for him to life his life to the fullest.
One of the skills we choose to focus on the most right now is building peer relationships and helping Brycen learn how to play & interact with his peers. Brycen is blessed to attend a school that encourages integration between the children with special needs and their typical developing peers. Brycen & I are even more blessed that the last couple years there is an amazing little girl at his school that has given him a boost in this area.
Brycen & Shealin met a couple years ago at the beginning of 1st grade. They were assigned to the same general education class. Even though Brycen only spent part of his day in that classroom environment, it was obvious the relationship that was budding between the two of them. As the year continued, the teachers/associates included Shealin more into Brycen’s day by encouraging her to be a “peer mentor” to him. Brycen is nonverbal & uses a communication device throughout the day. He also can be aggressive at times when he doesn’t know how to communicate or gets overwhelmed & overstimulated. Shealin understood all of this at the tender age of 6 years old & accepted him for who he was. It worked out so well for both, that at the end of the year the team unanimously decided it was best to put them in the same 2nd grade class as well to help Brycen with the transition. I don’t think any of us could foresee how this young friendship would grow into something even some adults don’t have in their life!
As 2nd grade progressed, other students & teachers came to realize there was not a Brycen in the general education classes without a Shealin with him. Two peas in a pod, the ying to his yang, etc. When Brycen is upset, he tends to be aggressive to those he is most comfortable with. Shealin is no exception to that. Yet, she doesn’t get upset with him like many other peers & adults do. She states how she feels when he hits her and moves on, never judging him, accepting that this is sometimes too hard for him to control. Shealin knows how to work Brycen’s communication device almost as well as the teachers/associates with him. She understands that he doesn’t play the way the other 2nd graders will at recess, and is eager to run around with Brycen in the way he knows how to play. She can tell the signs of when he is getting frustrated and immediately reaches in to hold his hand, give him a squeeze to help him through, or just whisper to him that it will be ok.
Their relationship has progressed outside of school as well. Brycen & Shealin are the true definition of best friends. Shealin is the friend that EVERY child deserves, whether they have a disability or not. Shealin has a heart of gold, wisdom beyond her years, & never-ending patience. When Brycen & Shealin are together, there isn’t “Autism” in the equation. Shealin is an amazing young girl that many older children & adults should strive to be like. She is not only Brycen’s hero during some very rough years of his development, but she is MY hero as well!
If you are reading this blog post, I hope & pray that your child can have the relationship of a lifetime like Brycen & Shealin have! I encourage you to talk to your child’s school & discuss implementing a peer mentor program like we are working towards at Brycen’s school for all children with special needs. Not only is it a benefit to your child…but it’s a benefit to the peers who will be taught acceptance & understanding of those who may be a little different than them. Let’s move into a new mission and focus on our children!
Tuesday, April 22, 2014
“Oh it’s okay, we won’t bother him.”
“So it’s okay to talk about it in front of him?”
This is a snippet of the conversation we recently had with the psychologist who heads Caden’s autism therapy team. The “it” was autism and the “he” was obviously Caden. I think she was a little surprised that we were so open about everything in front of him, but then again it is also possible that nothing surprises her about our household anymore.
Caden knows he has autism and an immune deficiency and allergies and so on. He can’t give you a medical definition, although he can usually give you a body part if you ask—so autism will usually refer to his brain or head, allergies to his mouth and throat, etc. He can even tell you which body part each medicine he takes helps, although he doesn’t know them by name, only by color and if he chews it, drinks it, or inhales it. Oh, and he does call the lactulose “poopsy medicine,” which is technically true, but also illustrates that he understands all of this on his level. And that’s how we intend to keep things. He knows that we go to the hospital every 28 days because his body isn’t very good at fighting germs, but he also knows that his body is really fast when it comes to running and jumping. He knows that Elf is an autism service dog and gets to go to school with him for that reason, while other people’s dogs have to stay home. He knows that some days he has to come home early to do autism therapy, and that autism is the reason he has a lot of challenges with reading, talking, emotions, etc . He also knows, though, that he has a pretty special dog and bracelet (Project Lifesaver) because of his autism, and that his autism makes him really, really good at video games, math, and not giving up on anything. We keep the conversations around him natural, on his level, and answer questions when he has them no matter how big or small. He also knows that he can stop the conversation if he doesn’t want to talk about it at that moment.
I suppose if I am honest I started this approach with Ryley because I was a single parent taking her to doctor appointments; there simply wasn’t anyone to sit with her in the waiting room while I talked to the doctor so she heard what was discussed. Because I didn’t want her scared or confused by what she was hearing, I started asking her if she had questions and usually she did. When she was younger, it was usually along the lines of if it was sticker (something little) or balloon (something big) worthy. As she has gotten older, she asks some pretty hard-hitting questions about risks and recovery and long term outlook. In fact, last summer as the doctor tried to skim past the material being used to replace her ear cartilage during surgery, she stopped him to ask some very specific questions about the donor process.
Since the approach works in our medical world, we just carry it over into everyday life. We don’t have a lot of secrets from the kids, and we work most challenges out with their involvement. There are topics that simply aren’t up for discussion—things like wearing seatbelts, taking medicine, or other life/death issues. But we don’t uphold a double standard either—they wear seatbelts, we wear seatbelts and so on. Things that we can do that they can’t, we explain in plain and simple terms, and they generally get it. When we can, we give them power to make decisions and take control. Caden needs his Project Lifesaver bracelet for safety reasons, but he can be empowered to help us check the battery every morning. He has to take all of his medications, but he can pick which one he takes first, second, and so on. Surgery isn’t discussable, but Ry can help us figure out when in the schedule will safely and most conveniently work with her school or dance schedule.
And this is all age and maturity level appropriate. Ry doesn’t like secrets, and needs to be prepped ahead of time particularly for anything medical; we talk to her as soon as we know something, and we help her find more information if she wants it. Caden, on the other hand, just gets anxious with too much lead time so we prep him the day or night before. All of this is a conversation; we share information, we answer questions, and we legitimize feelings. It’s okay in our house to get mad about an illness or a condition as long as it doesn’t become paralyzing. Recently, Ry became very caught up in her new medical challenges, and was having a hard time finding her perspective again; we found some kids her age with similar conditions for her to talk to and it really helped. Sometimes the conversation needs to happen, but maybe a peer or someone going through it understands better than mom or dad. We know that having a sibling with autism isn’t easy, and that she has feelings she probably isn’t comfortable venting to us, so again we’ve found peers and other adults that she can talk to.
And none of this is a perfect science. Sometimes we share too much information or information at the wrong time; my daughter is famous for saying, “geesh mom I so didn’t need to know that right now.” It’s really hard to gauge what Caden does and doesn’t understand so we do a lot of backtracking and fixing, but at the same time I feel better knowing that words like autism and immune deficiency can be spoken in front of our kids without shame or embarrassment. They are just facts in our family--a part of who we are. And I’m hopeful that if they know we are comfortable sharing with them, as they grow older and face new challenges in their lives they will be just as comfortable sharing with us. Although the questions are occasionally awkward, there’s no one I’d rather they get information from than us. Now if I can just find the answer key to life we’ll be set.
BUTLER MODAFF ROAD TO CHINA ADOPTION UPDATE!
We have been matched with an absolutely adorable little boy. He was born October 4, 2012 in the Henan Province. For adoption privacy reasons, I can't share his picture with you but trust me when I say he is absolutely ADORABLE! He has incredibly gorgeous big brown eyes and the most adorable smile ever; we can't wait to bring home and make him a part of our family. We are currently waiting on the next step of paperwork but are hopeful that we will travel this summer.
If you are interested in taking a look we do have several fundraisers underway. Through April 26th, we have are hosting an online Origami Owl Party: http://tracymiranda.origamiowl.com/parties/JenniferButlerModaff279905/collections.ashx We also have a t-shirt sale that helps us fundraise while also spreading adoption awareness: http://www.adoptionbug.com/butlermodaff/
Saturday, April 12, 2014
Each April, every person in the autism community who can put two sentences together takes to the internet to spread awareness, acceptance, raise money, fight, complain and praise the accomplishments made. Sometimes all of that happens in a single article or at least in the comments. If you’re unaware of the ups and downs in the community, let me simplify it for you. We’re a big family. One in 68 people has autism and that means there are a lot of people at the holiday gathering in April. Families bicker quite a lot. We fight about causes of autism, how to treat it or whether to eradicate it or accept neurodiversity as our platform. We discuss and argue nomenclature and where money goes to research organizations and which television shows are presenting autism truthfully and respectfully while not ignoring the challenges of living on and near the spectrum. Sometimes there are even drunken brawls that end in a smearing of blue and puzzles and taupe all over the dinner table and that’s okay, because we’re still family when the month is over and fights can lead to progress.
We still recognize each other wherever we go. We reach out to offer help to the new relatives on the block. We encourage each other most of the time when things are tough and you can bet your bottom dollar that if any one of our family members has a problem, we all swing into action like a well-trained special forces squadron. When we are together, we are strong and unstoppable.
When I think of how I relate to everyone in April, I can’t help but remember what happened the night I graduated from college. Do you know this guy?
This is Father Guido Sarducci, a character created by comedian Don Novello. It’s important that you have an idea of his accent before I tell this story. Unlike a lot of my friends, I had no clear path set up after graduating. I had no idea what I wanted to be and there I was all grown-up. I was just elated to be finished with school and my mother threw a wonderful party for me. I got wasted. At the end of the evening I was perched over the porcelain throne in my mother’s bathroom while she held my hair and laughed at me for trying to speak other languages I had learned in college. Then I broke out into Father Guido-speak. My mother had no intention of letting me off the hook, so she encouraged the discussion by laughing more and asking me where I was from.
“The Middle”, I said.
“The Middle? Where is that?”, my mom asked.
“Not the left side, not the right side. Straight down the middle.”
Now, why in the world would that be the thing I think of when writing about April and Autism? It’s simple. For all the fussing relatives throwing puzzle pieces, lights and blue jello at each other, there are a whole lot of us that come from The Middle. We get both sides. We understand why Aunt Rita hates the puzzle piece, we agree that Uncle Ned feels a connection to blue and we find ourselves hoping the family can sit down at least one time in April and hug, or at least not throw things and make Grandma cry.
Whatever you believe April should be about and how it is discussed, let’s do ourselves a favor and try harder to respect each other, listen to differing opinions and try our best not to sling food during the family portrait, for Grandma’s sake.
Friday, April 4, 2014
Welcome all to Autism Awareness Month – I often wonder what that means. AWARENESS – to become conscience, to recognize, to understand.
When my son was younger, shortly after we received his diagnosis of PDD-NOS (or high functioning autism for those not familiar with it), we went out to eat with a friend and her two kids. My son was having a really hard time dealing with the environment, it had been our first time there and he was running and touching things. While I was trying to calm him down, a very nice looking older man in a suit commented on my son’s behavior by saying: “you’re raising an axe murderer” to which I smiled and continued to talk to my son. That wasn’t enough for this stranger though. He continued by saying that he was serious, that he had been in the line at the bank earlier and had seen how my son was acting and how I clearly simply refuse to discipline him. Now, I need you to understand one thing: it had been maybe a month or so since finding out my son had autism, I wasn’t ready to tell my family about it, much less a stranger. By then my son was having a full-blown meltdown, I started to say something and broke down so I just grabbed him and ran outside to cry away from prying eyes. That was a very important day for me. It taught me two very important things: 1- People judge based on their own experiences and 2- I was alone in this battle for my friend never once said one word, not to me, not to the stranger who attacked me. With the many more nightmarish experiences that followed I was forced to grow a thicker skin, to educate myself; I was also more aware of my surroundings and the people in it. I used every “bad” moment as an educational moment.
Fast-forward 4 years of intense SPL, OT, PT, ABA and social therapies and I am now faced with a different, yet familiar problem. My son has now entered the invisible handicap status. For a while when I told people that my son has autism they would change their entire demeanor, they’d express understanding, sometimes condolences or even pity (I’ve learned to deal with that as well). Today when I tell people my son has autism I hear “he doesn’t look autistic” (you’re lying to excuse your bad parenting), or “how is he able to understand this but not that then?” Even friends and family members have come to “forget” that he has challenges because of all the great progress he has made. What has happened to their awareness, their understanding?
Don't get me wrong. I am not saying I wish his autism was more visible or that he hadn't progressed so much or so quickly, but it's a very bittersweet process for I am left lost. Sometimes I feel like I am starting to navigate Autism all over again, learning all about it from my son's point of view. To me autism awareness isn't about a day or even a month, it isn't about having people feel bad for the parents or sad for the children affected by Autism. It is simply to help others understand what it is or what it isn't. It's about breaking down stereotypes and opening doors not only for our kids but also for the estimated 1.5 adults living with ASD in the U.S. alone.
Tuesday, April 1, 2014
April is Autism __________Month
Okay, I have to start with a disclaimer. Last year scarred me; there was so much fighting within the Autism community that I choose to do the absolutely worst thing for my son---I chose silence. I let the fighting and hostility verbally shut me down. I have had a year to think about and reflect upon the choices that I made last year, and I think that I am coming back in a stronger, more mentally committed place.
Here’s the thing, I don’t really care if you fill the blank in with awareness or acceptance. I could honestly argue it either way. Depending on where you live, what resources you have available to you, or even where you are on the journey will greatly determine if you are in an awareness or acceptance mode. In the bigger scheme of things, it becomes a chicken and egg question. Individually, it takes a great deal of acceptance to be comfortable promoting awareness and sharing one’s own experiences and story. On the other hand, it is only through awareness that anyone moves toward acceptance. I am hopeful that the underlying intention of both awareness and acceptance is that of support. Support in being who individuals want to be as a person, support for finding resources within one’s own community, support for individuals who want to be compassionate and caring toward an individual with an ASD but don’t know how, support for family members who don’t understand why their loved one keeps wandering, support for siblings who wonder if they will ever have a playmate or a brother/sister who can verbalize their thoughts, and so on.
That same notion of support is what draws some individuals toward larger, national organizations, while other individuals are drawn toward smaller, local organizations. Support is what leads some individuals to shine a light or display a puzzle piece. I have said this before, but long before I knew what the blue light meant, I associated blue with my son. I’ve written several blogs, poems, and even a song about his blue eyes; the same blue eyes that stopped making contact with us. Blue was the color of his favorite Thomas the Train toys when he was younger; the same toys that lined our living room and eventually pointed us in the direction of a diagnosis. And he has always loved lights, so for me it was natural to light a blue light when given the chance. Interestingly no one in our neighborhood has ever associated the blue light with a particular agency but I do know that they put out their blue lights to support a certain little blue eyed train loving boy in my household. Financially, I am trying, as with all of my expenditures, to support our local community, but that doesn’t diminish my love for the blue lights either. In our community, the lights make me feel supported and my son loves to find them throughout the month.
At the end of the day, I don’t want to fight over what organizations we individually support, what symbols we use to represent our experiences, or what word choices we pick to describe the month. I want to share our experiences with autism, recognizing full and well that each and every experience will be as different as the individuals on the spectrum. My goal for the month is to try to take something away from each of those stories that I can in turn offer as support to someone who needs it. I’m going to write and share our experiences with the same goal in mind. April is going to be Autism Support Month in our family this year.
Friday, February 21, 2014
A 13 year old has so much to figure out about their identity and place in the world that anything extra that makes them different is a challenge; especially when that difference is a tube taped to the side of your face. Come on, think about how you felt when you had what you were sure was a mountain size zit on your face and you had to go out into public. It is also emotionally draining to deal with a major illness that may well be a life time long struggle and the frustration of being poked and prodded for days. I know that she has a lot to work through and honestly I wouldn’t even presume to be able to make assumptions about that process for her.
But I can tell you about my feelings.
I am often reminded that special needs parents are “stronger than you think possible” to which I usually want to reply were we given a choice? But in this instance I do have to agree that we find strength where it doesn't seem as though any exists. During our hospital stay I smiled and took notes as each team of doctors came in and asked the same questions over and over again and explained what their plan for the day was. I tried to maintain my manners with each nurse or technician who came in no matter how tired or frustrated I was. I gave quiet assurances to those who called or texted for updates. I was, for all practice purposes, the super mom that is often alluded to by those outside the special needs community; you know the handle it all with a smile and lots of coffee on no sleep mom.
That’s the story we perpetuate in our circles; meme after meme visualizes the stronger than you think possible mantra for us. And for the most part, it is true. But I think it is equally important that we share the other side with parents who might just be entering the special needs world. See sometimes you keep smiling and saying you don’t need anything to each person who walks in that hospital room when inside you are screaming I feel like I am about to fall off a cliff and I don’t know what to do. Sometimes you can’t wait for your child to fall asleep for a while at night so that you can cry silent tears while surrounded by medical beeps and hums. You might find yourself walking out of the room at 2 in the morning desperate for a breath of air only to find yourself holding a stranger whose language you might not even speak because in that moment they can’t find all of the strength that they need for their child. You look for outlets that make no sense to anyone outside of the hospital experience—a free washer and dryer on your child’s floor or a blanket, sheet, and pillow for the parent cot. Don’t even get me started on the joy of nurses sharing the free floor coffee pot with you (I’ve been known to tell a nurse or two that I love them over caffeine in the middle of the night).
Then there’s the story about your child that doesn’t get told enough. It is the story where they are angry or frustrated or scared and you are their safe place. As their safe place, you are the target of their anger, frustration, or fear. Sometimes that means they want you to hold them and sometimes it means they either won’t speak to you or their only words to you are those of hatred. You know they don’t really mean it but you’re tired, overwhelmed, and worn down enough that it shatters a piece of your heart even though you’d never burden them with that on top of the struggles they are already facing. But if I am completely honest, in that moment you will feel loneliness like you have never experienced before and it hurts like nothing you will ever have ever experienced. And at that very moment it doesn’t feel like you are very strong.
It is in that moment that you need to have heard stories from others who have been there, others who can admit that it is okay to feel less than strong. It is okay to be hurt or overwhelmed or weary to your soul. Often times we don’t really see the strength until we are through the struggle; survival mode doesn’t allow us to be very reflective. We don’t see the strength or the light at the end of the tunnel until we are on the other side of whatever it is that we are facing. In the moment of crisis, it is without a doubt all about your child and what he or she needs and what you need to do to make that happen. But I think we need to remind each other that afterwards, it is okay, healthy even, to reflect upon our own feelings throughout the process. Just like any wound, your feelings need a chance to be soothed, bandaged, and allowed to heal. Experiences, hurtful or otherwise, do make us stronger but it doesn’t happen without a few scars.
If we truly want to mentor others through the special needs experience we need to share our own scars and help other parents see the beauty in the ones of their own. These scars aren’t failures or a sign of lack of strength; they are proof that we have walked the battle grounds and survived and will be able do so again as need warrants. They are the true badge of exactly what we will endure for our children and they show that like our children we are warriors.
Sunday, January 5, 2014
And then they were all rejected at the Embassy. According to our courier service, this was the first time he had seen this in 17 years. One of our notary seals was about ½ inch off from where the embassy wanted it to be. The State Department was awesome about moving several of the seals for us, but unfortunately 4 of the 11 documents couldn’t be saved. The upside is that they were ones that were fairly easy and affordable to replace. Meanwhile, we had to Fed-Ex another cashier’s check out because the Embassy only accepts exact payment. This caused some (i.e. a lot of) tears on my part until I came to the realization with the help of our awesome dossier consultant, Sarah, that every family encounters a problem during the adoption process. Although this does set us back a bit financially, it didn’t happen after we had a match and were counting down to meet our child, it didn’t require us spending several extra months in another country, and it isn’t costing us thousands of unplanned dollars. All-in-all, this was a fairly benign oops in the grand scheme of things.
While all of this was happening, our Adam Walsh background checks came back and our homestudy was finally approved. We were then able to send off our I800a, which is our petition to Homeland Security/Immigration to adopt internationally from a Hague certified country. They texted us to let us know that they had received our application, and then approximately 2 weeks later we received a letter letting us know that we had our biometrics appointment scheduled for January 3rd.
So on Friday we all headed to St. Paul for our biometrics appointment. They actually request that only those with an appointment attend, but honestly we didn’t have a babysitter and figured we just stand if there was an issue in the waiting room with 4 chairs instead of 2. We arrived at the designated location only to find that they had moved. Thankfully, we found them a few blocks up the road and then things got a bit interesting. Because they are a federal building, service dogs are not permitted. On top of that, no electronics are allowed either. So we had a child who was absolutely devastated that he didn’t have Elf with him (he kept repeating “but he is a service dog” over and over again), and didn’t have any of his distractions with him either. Big sister was trying desperately to get over a nasty GI bug that didn’t improve much with a 2.5 hour car drive, and oh I didn’t have a voice as a result of serum sickness from an allergic reaction to penicillin. It is safe to say we made an impression on Homeland Security! Honestly, though, the kids did well, although Caden did melt down once we were back in the car because he leaned over the seat to say hi to Elf and once again realized he didn’t have his “bestest friend” with him. And then we drove home in high winds and blowing snow. It is fairly interesting though how a 5 hour drive with our children can make us wonder what the heck were we thinking when we decided a 3rd child was a good idea.
Now we wait for Homeland Security/Immigration approval, which we have been told could take a few weeks or a few months. Our papers are on their way home from D.C., and we have recollected the 4 rejected documents. They, along with the homestudy and the Immigration approval, will need to be sealed, although they won’t have to go to the State Department; they can simply go to the Embassy in Chicago, which Dan will probably drive down himself or we will lovingly talk family into delivering for us since documents can no longer be mailed into the Embassy.
I would have loved to have been able to travel this summer, but as with all things in the Caden’s Tale family, things will happen exactly when they are supposed to, probably at the most inconvenient time possible, and it will all be perfect.