…and just like that – 4th grade!

The trip to 4th grade……

A few years ago, we had a long, tense and emotion filled Individualized Education Plan (IEP) meeting. It was long….very long! I read to the team something I had written titled “Peter at 25”, and challenged us all to determine what we needed to do to reach the goals of independence. We talked a lot about what Peter needed to be able to do as an adult, where he was today, and what we needed to do to get to our goals. There was a lot of passion at the table and maybe a few damp eyes. I know everyone sitting at the table is invested in Peter, we just don’t always agree on the how of our goals.

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First day of Kindergarten. August 15th, 2012

 

Sitting at the end of the table was a student teacher, her eyes wide opened. I feared I was making her reconsider her career choice. At the end of the meeting she came up to me, with tears in her eyes, to thank me for giving her the honor to sit through Peter’s IEP. She said that hearing my words touched and challenged her, that she had learned more in those hours than she had through school, and that she felt that experience had redefined who she wanted to be as a teacher and the responsibility towards children on IEP’s that she had not considered before. She thanked me profusely and left me with the words “Peter is so blessed to have you as his mother, and one day I hope I get to meet Peter, and maybe teach him”.

I left that meeting and called a friend who promised to pray for the meeting to go well, and wanted to hear all about it when we were done. I remember telling her that I felt a “God wink” because the student teacher’s name was Trinity. Despite the challenge of the meeting, it put into motion changes that were needed and as a team we worked better together after it.

Last Friday I visited Peter’s 4th grade class for the first time. His teacher walked up to me and said “Catherine, Peter’s mom, do you remember me from Peter’s IEP meeting a few years ago?” I was floored as the memories flooded over me. It was Trinity. Unknown by me, she had later got a job at the school and begged to be allowed to teach Peter. Goosebumps and tears moment. She followed up with, “I want to get together as soon as possible to talk about your dreams and goals for Peter, and plan on how to make them happen”.

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Peter and Trinity….kicking off a great school year! August 11th, 2017

As Peter ran around the school, with adults and kiddos excitedly greeting him and welcoming him back, I know in my heart that he continues to be in the best place for him. We are so blessed to have a great school with dedicated individuals who care for Peter, a school where peers of all ages know him and befriend him. Now, in Peter’s world school is all about riding the big bus, PE, and recess – playing football with the big boys!

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Riding the bus on the first day of 4th grade…..the bus came to the wrong side of the road – oops! August 14, 2017

And in the midst of the excitement of family vacations and jumping back into school, I failed to send out notice earlier about our annual Colorado Springs Down Syndrome Association’s Buddy Walk. Yes….that time of the year…..our Buddy Walk is this Saturday, August 19th. Below is a link to Team Peter Bear where you can join our team as a walker, a donor, or both; and access information for the event. We sure hope you can join us!

GO TEAM PETER BEAR!!

xoxo

catherine

so grateful for so much!

It has been two months since I shut off my work computer for the last time. Gosh that day was hard! I actually cried in ways I didn’t think were possible. I wasn’t prepared for how hard it would be to walk away from a career I started way back in 1996 – a career that has provided for my family in so many ways. Personally there were so many experiences, friendships, challenges, rewards and everything in between. Work really was the constant in my life through all the ups and downs that we’ve weathered over the years.

...life feels double good! ...

…life feels double good! …

This has been my first summer off with the kids…..ever! And, I love it! I have not felt this relaxed in as long as I can remember. It is the first time I haven’t felt torn in too many directions, trying so hard to give everything my best yet feeling like I was falling short on all sides. I started off in the blaze of glory fitting in all the fun I could into a week – as if I thought the time was going to run out. End of June arrived, and I was tired! July has been much calmer, and realizing just how much joy we get from a morning at the library, an afternoon at the pool, a rainy day playing card games and board games, or those quiet moments when everyone is sucked in by the book they are reading. It really has been great!

Chilling out on a rainy day...

Chilling out on a rainy day…

A day at the ranch....love Rock Ledge Ranch!

A day at the ranch….love Rock Ledge Ranch!

It was all fun and games, until Gretchen beat them - again!

It was all fun and games, until Gretchen beat them – again!

National Geographic photographer in training!

National Geographic photographer in training!

Realizing now that I never hit POST on my May update with Peter…..I’ll just do a quick run down. Peter gave us a scare in May. After being healthy for so long, he woke up one morning struggling to breath. We rushed off to the ER, and after some back and forth with the doctors, the decision was made to admit him. While he is no longer on chemo, which works to his advantage, he has a history of going south fast when it comes to respiratory issues. Peter continued to deteriorate after admissions, and was really close to getting moved into the PICU. I admit, flashbacks to the months on the ventilator rushed into my mind. I didn’t realize just how raw my emotions were around that period of time. By the grace of God, Peter turned the corner and we were able to discharge just in time to celebrate his 8th birthday at home. In his short life he has spent months in the hospital, including several holidays, but has always pulled off having a birthday at home. He cut it way too close on this one!

A few days late - but celebrating his birthday with his 1st grade class! Happy 8th Birthday!

A few days late – but celebrating his birthday with his 1st grade class! Happy 8th Birthday!

Peter has participated in a day camp through our city this summer, and loved it! It was important to me to have him keep up the skill of a structured day, and functioning in a group of peers – not his siblings – to avoid some of the regression we’ve had in prior years. It was well worth it – Peter has had the time of his life! He has made new friends, gone to the wave pool every week, and field trips once a week. He has kept up the skill of working well in a school-like setting. Suffice to say, he beat the rest of us out when it comes to fun. Throw in that once he gets home he wants to play more, swim more, and have more fun – the kid is a 24/7 party!

Excited about summer camp!

Excited about summer camp!

Peter now has tutoring two days a week, for 1.5 hours each session. My heart sunk when it appeared he could academically do very little – so discouraging! However, I think his brilliance is just starting to emerge in those sessions. A matter of a new teacher and them getting to know each other. What Peter has shown so far – he is a good listener, he understands how to function in a class setting, he always uses his manners, he tries VERY HARD at all that is put in front of him while following all instructions, and he has an amazing attention span. Just a few years back, it seemed getting him to sit in a classroom chair for more than a couple of minutes was an impossibility. Now the teacher is reporting she almost has to insist for Peter to take breaks, but given the choice he would just work non-stop for the full session.   I take that and translate to adulthood – who would not want to hire a great looking kid with good manners, good listening skills, good focus and able to follow directions? We have academic skills to work on – but those soft skills are not easy to teach, and he is nailing them. Proud mama moment!

Life skills.....mastering grocery shopping. He did it all, including swiping my card, with very little guidance.....and when all done threw his arms up in the airs and triumphantly shouted "I DID IT!". Now I take him weekly for him to do a short trip with a list of four items. Practice, practice, practice!

Life skills…..mastering grocery shopping. He did it all, including swiping my card, with very little guidance…..and when all done threw his arms up in the airs and triumphantly shouted “I DID IT!”. Now I take him weekly for him to do a short trip with a list of four items. Practice, practice, practice!

Peter’s receptive language skills are strong, but the speech apraxia has made it so hard for him to communicate what he knows. He has the language and ability to express his basic needs, or interact with his siblings. But formulating a phrase or even being able to answer questions is such a challenge. Despite this, Peter has such a great attitude. I would be so frustrated to have thoughts and no way to express them, yet he smiles and perseveres on. The lack of speech makes it hard for him to make friends, but I am often overwhelmed by the kindness I see from his schoolmates. I think “Hi Peter!” may be the most used phrase at the school. This carries outside of school, as I have witnessed a line of girls form next to the little pool at our club, and the pretty little girls of all ages squeak out “Hi Peter!…..remember me?!” He still plays hard to get, so the squeaks get higher pitched until Peter returns with a “yes” and the girls smile big and giggle with excitement.

Peter is still struggling with writing. He likes to try to trace letters on the iPad with his finger, but anything with a writing instrument is a real challenge. This fine motor skill has always been a challenge, but I think too that he has sensory issues with his hands that have made it even harder. I don’t know if this is just part of his sensory processing disorder, or as a result of nerve damage from the chemo, or a combination of both. Since he started chemo, he is not able to get through the night without waking up and wanting to be cuddled/comforted. During this half awake/half asleep stage, he will often rub his hands on different surfaces as if seeking some input. When he finally does it long enough, he will fall into deep sleep again. Brushing, joint compressions, weighted blanket, and other techniques we’ve used have not yet got us to the point that he can sleep through the night. Which of course means John and I are not getting a solid night sleep either. John functions on little sleep much better than I do – and is good about trying to get Peter back into his bed. I admit, in my zombie like state, I hold him closely to me in bed and pray for the hand rubbing to stop so that we can both be in deep sleep.

Finger tracing is coming along.....writing with a pen - well, need more practice!

Finger tracing is coming along…..writing with a pen – well, need more practice!

Peter will be starting second grade in just a few weeks. And I know the highlight of his day will be running down to the bus every morning. Peter has switched up physical therapy a bit, and is now doing it in a gym like setting. He loves it! He has also shown that he has a great skill of running while kicking the ball in a soccer like way. He also has a killer left handed bat and great accuracy when batting a ball off a t-ball stand. So, I am thinking we know what sports to try this school year. Peter has also demonstrated a great ability to hold his breath and float in the pool – often inflicting instant fear in those around him – until he whips his head back up with a big smile. Yeah, not really planning on capitalizing on the “I fake a great corpse” skill, but it has helped with working on his swimming skills. All in due time!

...so excited to jump on the bus and head off to school!

…so excited to jump on the bus and head off to school!

Hanging at the pool....and scaring a few folks when he  decides to float like a corpse!

Hanging at the pool….and scaring a few folks when he decides to float like a corpse!

Of course, Peter is not our only child despite the thesis like updates I can write on his adventures!

Peter, Jack, Tommy, Alexandra, Michael, Gretchen....and almost all are smiling!

Peter, Jack, Tommy, Alexandra, Michael, Gretchen….and almost all are smiling!

So here you go –

Alexandra is moving out and into her own apartment next week. So excited for her! She worked a ton of hours during this year off, and will be starting college back up next month. Her goal is to get into nursing, and hopes to one day work in pediatric oncology. She also decided to make some other changes, and dyed her hair dark brown. Looks great on her – but she does stick out in family pictures! We are so excited what the future will bring to Alexandra as she leaves the nest.

Alexandra - rocking her dark do!

Alexandra – rocking her dark do!

Michael just got back from a mission trip, and is getting ready for his senior year of high school. Where did the time go? He is academically doing well, and hopes to go off to engineering school, where I know he will do great! Still much work to be done on the college search front….sigh! Michael also learned how hard it is to break into the job market as a high schooler – it is not the market it once was, as he competed against college kids and adults. He did get a job at a local Italian eatery, and plans to keep working through the school year. We are very proud of him!

First day on the new job - and looking good!

First day on the new job – and looking good!

Jack completed his first year at Thomas MacLaren with Michael. He picked up the cello easily, but would rather pretend Latin is not a subject he needs to participate in. He had one of the lead roles in his class play for Public Performance, and memorized some great poems which he delivered flawlessly with a British accent. He played two seasons of football, and is hoping to join the team for our home middle school within our district.  Jack dreams of being a computer and game designer/programmer, and given that he has taught himself basic programming, I think he will reach his dreams!

Tommy and Jack - the dynamic duo!

Tommy and Jack – the dynamic duo!

Tommy completed 4th grade at Corpus Christi. Academically he performed marvelously, but his highlight were the friends he enjoyed and their “club”….a very well formed, organized, and democratically governed club. Tommy played one season of soccer, and hopes to keep it up this next year. Tommy and Gretchen will be homeschooled next year, and then we will decide if he joins Jack at Thomas MacLaren or explore other options. I am very excited to have this time with them. Tommy continues in Scouting (although I admit I fell behind on activities), and he was awarded with Outstanding Scout of the Year award for his great attitude, hard work, and continued top sales in popcorn again. He really is gifted when it comes to door to door sales – I’m impressed! I am excited to have Tommy continue to grow and participate in what he enjoys most – contributing to our community in so many different ways.

Peter and Gretchen are so blessed to have each other.....one day she will appreciate all his hugs!

Peter and Gretchen are so blessed to have each other…..one day she will appreciate all his hugs!

Gretchen completed pre-school at Corpus Christi, where she loved her teachers and friends. She is a boisterous contributor to all activities, and learned much to prepare her for  kindergarten. She scored very well in standardized testing, and is excited to be homeschooled this next year. Sadly, after 15 years, we made the decision to leave the school. We have much history, wonderful memories, and great friendships formed at that school – but the administration’s mishandling of issues has lead us to no longer feel it is the best place for our children. It was a difficult decision, but one we feel very confident in. This summer Gretchen took swim lessons – and quickly became a little fish. We are hoping to pick up with more lessons during the school year, but she is begging to do ballet. Now, gymnastics lasted one session before she decided she was bored with it. Ice skating lasted one session before she decided she really didn’t like falling on ice. But, her great grandmother was a very talented ballet dancer (as my mother shared with me). The gene missed me, as my mom was encouraged by my ballet teacher to not waste her money on me (and I heard it….sniff sniff). But, little G may be the recipient of this gene and find her passion!

Gretchen - beach bum in Colorado!

Gretchen – beach bum in Colorado!

Last July, John re-entered the job market, and it has been an amazing year! He loves the company and his co-workers, and they clearly feel the same way about him. Doors continue to open, and he is excited to grow and advance. He also coached the St. Mary’s girls golf team again this spring – and once again had his top player make it to state championship.

John getting some golf in for Fathers Day!

John getting some golf in for Fathers Day!

Check out that ball! Clearly John's genetics at play!

Check out that ball! Clearly John’s genetics at play!

John has been working hard, but was able to get a movie night at the pool with us - and all the kids were so excited!

John has been working hard, but was able to get a movie night at the pool with us – and all the kids were so excited!

I am sure there is much more to share – but this update as reached the “Mama are you done?” stage and escalating emotions between the kids. It is sort of like when kids can ignore you until you are on the phone, then must talk to you. Or avoid you until you go to the bathroom, and then their finger tips and lips slip under the door as they insist there is a crisis that needs immediate attention. Or their fine tuned radar-like skills that sense when you’ve tried to enter stealth mode and tip toe off to another room just to read for a few minutes, and they intercept before you reach your destination. Yeah….like all those things.

...and I did get some adult time - good fun, great company, a little creativity and sipping wine....

…and I did get some adult time – good fun, great company, a little creativity and sipping wine….

So my last thing….and you knew this was coming…..in less than 5 short weeks, we will be attending our 9th Buddy Walk in honor of Peter. There is much more information on our page, so we invite you to visit our page and consider joining us as a walker, a virtual walker and/or a donor. Every dollar raised goes to support individuals with Down syndrome and their families in our community. From pre-natal diagnosis support through adulthood, so many families benefit from the services offered by the CSDSA – all of which is possible by the funds raised once a year through the Buddy Walk. We hope that you can join us!

Team Peter Bear – Buddy Walk 2015!

With much love and gratitude for all the support each one of you has given us on our rollercoaster of life!

What really matters - FAMILY!

What really matters – FAMILY!

xoxo

Catherine

In case the link didn’t work – please copy and paste this URL into your web browser.   http://csdsa.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=5010

 

Six weeks of emotional kaboom!

July and August have been emotionally charged months. Probably more for me than anyone else. I had a lot of emotional investment in a few appointments we had – and as a result, my emotions to the results were even stronger. The first was in early July where I was told Peter probably has speech apraxia. It was frustrating since I had suggested it a year earlier, and they were the same folks that told me to keep doing what we were doing because Peter just needed time. This time the panic of “the window is closing” heightened my emotions to the year lost. I have since walked away (a bit) from that ledge, being reminded that Peter’s picture is next to “perseverance” in the dictionary. My next emotionally charged appointment was the actual speech assessment. We understood that this assessment was necessary to ensure we had the correct diagnosis on Peter, and therefore treating his speech challenges the correct way.  I got there early – too early – but Peter was patient as we waited for our appointment. He was not too excited to have to sit in one single spot for too long, but did follow instruction and completed the assessment. My tummy was churning as I watched the therapist feverishly take notes on the sounds he made instead of clearly articulating a word. Finally we were done, and Peter was thrilled to go back to playing as he wanted – without direction! The conclusion – Peter does not have enough speech to diagnose what one or more disorders he has at this point. Peter smiled happily as we left, but I felt someone stunned and horribly disappointed. We had waited over a month for this appointment. He is 7 years old, and speaks in single words that are clear to a few of us. He has some memorized phrases – but even those are not clear to everyone as they stare blankly. And there are times I have no clue what he is telling me because it is a sound out of a particular context, and I am stumped. Clearly something is wrong! I believe Peter is capable of much more than what he has achieved – and he has the attitude and perseverance necessary to persist until he succeeds. Yet, here we were with another extremely frustrating situation. On one hand we are told we need a diagnosis to ensure correct treatment, and on the flip side he doesn’t have enough language to diagnose something. Feels like a Catch 22, but at the end of the frustrating situation is Peter, still unable to communicate. The fact that he doesn’t get horribly frustrated is truly miraculous.  This was the second appointment that I had so much emotion build up for, to just walk away with a contradictory feeling of emptiness and full of frustration.
When in doubt - dance! My kids and their cousins found some pianos covered up in a barn. While they all wanted to clunk out some tunes, Peter decided to just enjoy it....see him?! yep....dancing on the far left!

When in doubt – dance! My kids and their cousins found some pianos covered up in a barn. While they all wanted to clunk out some tunes, Peter decided to just enjoy it….see him?! yep….dancing on the far left!

At the suggestion of a friend, we wanted to look into metabolic issues that can contribute to neurological disorders, including apraxia. So armed with this information and several medical articles, I requested a test be done on Peter so we would have a baseline before introducing anything new. We know that after years of surviving on turkey hot dogs and yogurt, he is hardly the picture of dietary health. We endured way too many visits in the hospital by dietitians who treated us like we were the worse parents in the world for not giving Peter a balanced diet. Only a parent who has desperately tried to get there child to eat, understands just how painful those conversations are over and over and over again. You are already struggling with the challenges, and it is like having your heart pushed into the dirt and stomped on. I am grateful for a friend who once told me “…sometimes any calorie is better than no calorie….”. I have held on to that for years as a source of comfort. Denying Peter the foods he would tolerate – especially during chemo – with the purpose of forcing him to eat something else would have been futile. He would just have gone hungry, and made further feeding any harder. I know that because we already tried that. That aside, we know Peter is probably metabolically out of whack despite the daily kids vitamin. Several phone calls later – no one would write up the order to have this test done. Why? Because the only way to treat Peter was through speech therapy.  By this point I think my heart was in my throat, and all i wanted to do was let out giant tears and a primal scream that would have been heard in China! Fortunately, my last physician to talk to was the answer to my prayers. Fearing my last attempt would be futile, I was surprised that she completely agreed, and is not only helping get the testing done but is setting us up with a nutritionist who specializes in childhood cancer patients. This time the tears did just pop out and stream down my cheeks as I thanked her over and over and over again for being the angel I so desperately needed at that point. So later this month we have the appointment, and I am hoping all goes well and we can move forward with exploring options to supplement therapy and break down the walls that hold Peter back from sharing his deepest thoughts with us.
"Woo dude! Did he really toss this ball at me?!"......Peter was tossed a ball during a ball game before surgery.

“Woo dude! Did he really toss this ball at me?!”……Peter was tossed a ball during a ball game before surgery.

So last but not least at this point, was Peter’s scope. Another source of frustration as we have been trying for a year to get this coordinated. For one reason or another, it just didn’t come together. So we opted to have the procedure done in Denver. This led to more appointments, and the decision that Peter needed to have his tonsils and adenoids out. This was 180 degrees from our starting point a year ago. So, we moved forward. This last Tuesday, Peter and I headed up to Denver to have the procedure done. The tonsils and adenoids came out with no problem – but recovery has been hard. He came out of surgery like a champ and ready to run around the hospital. The RN did warn me that it gets worse before it gets better – I underestimated what she was telling me. Peter is alternating Tylenol and Motrin every 3 hours and spends most nights crying unconsolably. He doesn’t want to drink or eat, and has a low grade fever that comes and goes – no doubt because of the Tylenol and Motrin. And his breath – on my goodness – I didn’t realize just how bad it smells recovering from T&A!  My emotional investment in this appointment was the result of the scope. For the last 12 months I held onto what we were told in his first ENT appointment – that his husky voice was due to paralyzed vocal cord, and he had a cleft in his voice box – both of which contributed to his aspirating. The plan was that following this procedure we would have the cleft repaired, and I believed we would finally overcome the obstacle of aspiration. Sigh. I was wrong. The results of the scope showed that there was no paralysis or cleft…..meaning, there is no anatomical reason he is aspirating, so to assume this is neurological. In addition, there is damage and irritation from his throat all the way down to the depths of his little lungs. The damage/irritation was far more than expected. We are waiting for the results of the analysis on his lungs. But, based on what both pulmonology and ENT saw, they believed Peter is still aspirating (maybe on his own saliva) and having reflux.  In addition to the damage/irritation, both specialties commented on how asymptomatic Peter is given his issues. Clinically, on the outside, he looks like the picture of health. On the inside, his little 7 year old body has way too much damage. They both said that it was truly amazing that Peter doesn’t have recurrent ear infections, and spend most of the winter in the hospital with pneumonia. But, what we are seeing is unexplainable at many levels – and therefore possibly neurological. Sigh! They asked if we had an MRI done, which we have not. But to be honest, I have no clue what you would look for in an MRI that would in any way change what we are doing today – speech therapy for apraxia, and thickening all his fluids to mitigate aspiration.
Waiting for his date in the OR......he is so comfortable in a medical setting, but had no clue just how much it would hurt at the end.

Waiting for his date in the OR……he is so comfortable in a medical setting, but had no clue just how much it would hurt at the end.

Post surgery - he was hard to wake up, but once he was up, he was ready to stay up....took some coaxing and a lot of snuggling to get him back to sleep.

Post surgery – he was hard to wake up, but once he was up, he was ready to stay up….took some coaxing and a lot of snuggling to get him back to sleep.

Peter dressed himself (I promise i don't do shirts backwards), grabbed the nurse's flashlight, and was looking for a way out!

Peter dressed himself (I promise i don’t do shirts backwards), grabbed the nurse’s flashlight, and was looking for a way out!

I left Denver feeling like I had more data on Peter, but less answers. As horrible as it may sound, I really hoped he had a cleft in his voice box. Something visible, something repairable, something that could be fixed to take one bad thing off his long list of challenges. The next step now is to put Peter on steroids to improve the health of his throat and lungs, put him on preventative reflux medication, and let him heal from the scope. The results of the study on his lungs may change this, but we will cross that bridge when we get there. We are being scheduled for another swallow study and sleep study in about 3 months. This will allow the specialists to reassess Peter and determine if anything has improved as a result of clearer airways. If there is no significant change, then Peter will likely get put into an interdisciplinary program with ENT, Pulmonology and GI. While my dream is that Peter’s health improves, I’ll settle for a group of doctors actually treating Peter together. I know I have said it before, but it is so hard when you have so many experts providing direction on what to do with Peter. He is still just one little boy. So having several specialists see Peter as a single child, and come together to determine treatment, is really a relief. How awesome would it be if every person invested in Peter’s health and development could sit in a room together and help come up with a single plan we can all march to!
Since he came into the world - Peter has known how to convey so much in a  gaze.....

Since he came into the world – Peter has known how to convey so much in a gaze…..

The last six weeks or so have just been emotionally draining, and then school came upon us. Another reminder of how much more we need to work with Peter to get him remotely in line with his peers. Someone once told me to “never give up” on Peter. I was hurt by that …..as if giving up were ever really an option. Sometimes things are discouraging, but a single second with Peter takes my mind off everything else. I rejoice those moments where I can just gaze at Peter for being Peter…..not Peter in a world that judges, ranks, and categorizes him. It is those moments of gazing that are beautiful! I will not lie. Sometimes they are interrupted by a screaming Gretchen, a dispute between the boys, a pounding at the front door, an incessant “ping, ping, ping” on my phone or the timer of dinner. Reality! However, I find my greatest joy comes when I can push those distractions away for just a few seconds and scoop Peter up in my arms. I whisper to him “I love you, Peter”, and he replies with “I you”. The hand on the cheek, the arms squeezing around my neck or the simple gaze back at me makes those two words priceless! I know how hard he has worked to get those two words out – two simple words that fill me up and remind my why never giving up is the best choice I ever made.
xoxo
Catherine
ps. CSDSA 2014 Buddy Walk is this next Saturday, August 23rd. We invite you all to join our team – as a walker, virtual walker, and/or donor. We believe firmly in the CSDSA and truly appreciate every dollar donated to this organization that does so much for those in our community and Southern Colorado. Hope to see you there walking on TEAM PETER BEAR! (just click on the words to get to our team page)

the elephant in the room….

Yeah, there is an elephant in the room. But not in the traditional sense. I actually see the elephant, acknowledge the elephant, and he was firmly sitting on my chest! The day before 4th of July, I ventured up to Denver with Peter (and Jack in tow) to have an assessment done at the hospital. Note to self: never, ever, ever venture the trip up on the day before a holiday weekend…never, ever, ever, ever again! The appointment included OT, Speech and medical. I admit I was all over the spectrum from completely stressed to beyond excited, and everything in between.

We were so excited leaving the Springs.....little did we know what was waiting for us on the roads!

We were so excited leaving the Springs…..little did we know what was waiting for us on the roads!

When I had a similar assessment done last year, I had mixed feelings coming out of it. Some sessions far more valuable than others. So there was that nervous anticipation and desperate hope for some really good information. Occupational Therapy came first – very positive feedback on Peter, and good information/suggestions on handling handwriting since that is his challenge right now – plus he appears to be ambidextrous, which adds to the challenge when he changes his mind on what hand to try writing with. He knows how he is supposed to write the letters – but his hand flies all over the place if you don’t do hand-over-hand support. Speech Therapy came second – and that would be when the elephant pounced on my chest. This has always been a concern area for me because Peter has always progressed so slowly. I remind myself that he started on the way negative end of the spectrum – not tolerating anything in his mouth, unable to feed and definitely making no sound. While his vocabulary has grown significantly over the last year, he is still pretty much a one word guy, and unless you know him well you would not know what the words mean. Many sound the same, and others are clearly said wrong (“nana” = baby in his world even though he can make the “b” sound).

Last year I had suggested he might have apraxia given what I had heard from other families with the challenge. I felt somewhat blown off, and told to keep doing what we were doing, and teach those interacting with him what his sounds meant. Really? At some level I understand why, but am I supposed to teach everyone that interacts with him what his sounds mean? It didn’t feel very long term, but I held on to the hope that speech would “click” if we just kept working with him – and seriously, he has people talking to him all day long, so not a lack of exposure to language! This time a new SLP came in. I knew I would like her when she walked in with notes and a list of question….I so appreciate organized and prepared! I gave her my view on Peter, and then she asked me some questions. She played with Peter for a while. Then turned to me and said “Have you ever heard of speech apraxia?” I honestly turned stone cold and started to feel numb.

Childhood apraxia of speech (CAS) is a motor speech disorder. There is something in the child’s brain that is not allowing messages to get to the mouth muscles to produce speech correctly. In most cases, the cause is unknown…..there is no cure, but with appropriate, intensive intervention, progress can be made.

The rest of the appointment – speech, followed by medical – was hard as I felt the air being pushed out of my lungs and my chest hurt beyond belief. The conversation included “brain disorder”, “unknown if he can make progress”, “window for speech is closing” and more. I needed some hope so when I asked if we started right away, what would Peter sound like in 10 years. I knew that was not reasonable, but I needed a glimmer of hope. The response was that without a magical glass ball, there was no way to tell if Peter would sound the same or different in 10 years – but that we needed to try before the window of opportunity was lost. The first step is getting an actual assessment done to determine which (one or more) speech disorders he has that are impacting him.

At that moment Peter was very hyped up! After two hours plus in the car, surviving on an IKEA hot dog and ice cream, and being kept in a small space played into his antics! He figured out how to push furniture around so he could climb onto the exam table, call out “mama” and lunge with that pure faith that I will always be there to catch him. Such faith! It was then followed by taking all the rubber animals he was playing with during speech, and pitching them across the room – prepping to be a baseball pitcher? He was happy. He was having fun. And my heart was shattering into a million pieces.

What would happen to the sparkle in his eye and the big smile on his face, when he got older and realized he could not share his thoughts? When he understood that when people don’t understand him it is really because of his sounds and not because the recipient was just not capable? When he has his first crush and will not have words to express his feeling? And then my biggest fear – unable to communicate if he is being hurt. Peter is so loving, and so trusting that he doesn’t conceptualize that any injustices are being done against him….and even if he gets upset, he forgives and forgets in seconds. He can’t tell me what happens in the class, on the playground or on the bus. What happens if he is being disrespected? Picked on by peers? Bullied? If he can’t even answer my questions – he could be being abused – and I would not know. I think at that point the elephant was joined by his peers as they all sat on my chest. I could hear doors slamming closed in his future – the basis of relationships and society is communication. How does someone, who is already cognitively challenged, survive when his brain will not allow him to string sounds together to make words, or words to make sentences? He is unable to even string two signs together – so can’t put two words together in American Sign Language without some major prompting.

I will admit that while I sat in that room, trying desperately to hold on to all the progress Peter has made, it seemed so irrelevant when I looked into the future. At that moment in time I so desperately needed someone to tell me to just hold on because there was a light at the end of the tunnel – not a train wreck. Peter has gone through so much in his short 7 years – but most of what we have dealt with had the opportunity of being overcome, risky, but always a light at the end of the tunnel that we aimed for with hope.

As I talked to the doctor, I finally told him I just needed someone to tell me what I needed to work on in priority. Everyone we meet with gives us a long list of things we could or should be doing. We have more assessments in the works, in areas we know we have challenges in. “I am one mother, with one Peter…..with many specialists and too many lists of things to do. I can’t do it all, and he can’t tolerate it all. Please tell me what to work on first!” As I begged for some direction, all I could think of was all we have going on – a genetic disorder, a brain disorder, sensory processing disorder, partial hearing loss in one ear, poor vision with an eye that will need surgery, feeding challenges, one or more paralyzed vocal cords, undefined number of structural issues in the throat that may or may not be repaired, a repaired heart with a tiny hole still in it, lungs that are damaged, pulmonary hypertension that at any point could stop responding to oxygen and cause him to find it harder and harder to breath until he no longer can – he is already dependent on night time oxygen, sleep apnea where he just stops breathing, lack of hand/motor coordination, a stagger that would imply he is intoxicated most of the time, poor ankle strength and feet are becoming distorted as a result. And let us not forget leukemia – in remission, but always lurking. I knew the list went on, and did not yet include all the other “priorities” we have been given on things Peter should be achieving. Can someone just celebrate with me that he is alive, when by reasonable medical standards, it is nothing short of a miracle? Not even I could really focus on that at this point.

The doctor looked at me kindly, and it was like he could read my mind. He said –“ Let us never forget that Peter is a miracle, a true miracle. Let us not forget all he is doing, that most kids who have gone through what he has, would be unable to achieve. But if nothing else – we have two things to focus on. First – determine the list of issues in his ears, nose, throat and lungs, and come up with a plan of attack to address what can and determine how to handle what can’t be fixed. Second – full assessment of speech, and get moving on that fast”. Then he crossed to room to catch my crazy bear who was anti-feng-shui-ing the exam room. It was clear that at that moment in time he was oblivious to the chaos Peter had brought to the space, and he looked at him in a way that oozed pride. As he smiled he said “Look how much fun he is having…..look how much he loves his brother. Peter is special”. Yep, queue up some watery eyes and an extreme effort to try keeping it together.

Then we loaded up in the car, and started the long trek back to Colorado Springs…..yes, on the afternoon before 4th of July – never, ever, ever again! I really wished at that moment in time the world would stop turning so I could just digest all my thoughts and feelings in an organized and cohesive way. Now, sitting still on I-25 is like the world stopped turning, but for the two kids in the back of the car that really didn’t want to be trapped. They settled down for the long ride home when Jack got his Wendy’s meal, and Peter a pack of fries and a Starbucks. Yes, my happy juice is his happy juice, and he deserves it!

This last weekend I left all the Krause kiddies with John, and headed to Indianapolis. It was the annual Down syndrome conference for families. Experts from around the country come together. Thousands come from around the US and the world to attend the conference and learn, share, learn, and share. I had pre-selected the sessions I was going to attend – how to help Peter write, read and do math. I was so ready to be focused just on his academic progress. I wanted to still only have to focus on academics. I switched a few things around and attended a session on speech disorders. Darn – everything felt so raw! I looked at the other families sitting in the room – I was not alone, but there were so few compared to the volume of families there. I saw the relief on some parents faces as the information was shared, and they now believed their child didn’t have a clear disorder they had to deal with. At the end of the session I stood in line to talk to the SLP leading the session. By the time I got to her, my brain was mush, and I could barely articulate what I wanted to. I saw the expression change on her face as I described Peter, and she tilted her head to the side, and said it would appear that Peter has apraxia and to definitely get the evaluation done soon. I walked down the hall, to the exhibit, and bought the one book on apraxia on the publishers table.

That night I went to the large kick-off sessions that welcomed everyone to Indianapolis. Leaders and self-advocates (adults with Down syndrome) each took turns. One young man got up. Handsome with dark hair, and an adult version of Peter’s stocky build. When he spoke he tried so hard to get his words out. I saw how his face scrunched up, almost painfully, as he worked to get his sounds in order to welcome us there. He persisted – and it was beautiful! The smile on his face seemed to not only welcome us, but also pat himself of the back for a job well done. I think I clapped the hardest and loudest in this huge ball room. If this young man can get there – why can’t Peter? Why can’t Peter, one day, be up on a stage welcoming families with young children to the conference? It won’t be easy, but doesn’t mean it can’t be achieved. My eyes welled up. I thought of Peter flying off the exam table with that complete faith that I will catch him. As hard at this journey is sometimes, I have to remember that no matter how I am feeling, I better always be ready to catch Peter. He has not lost is faith in himself, in me, in those around him – and he will expect us to always be there, ready to catch him, as he lunges eagerly forward in life.

Some of the elephants are off my chest now…..but it still hurts…..in the quiet darkness of the middle of the night I still think “Why Peter? Really!! Why did Peter have to get all of this?” and I try to find comfort in knowing that Peter has super-human resilience and persistence, and that he will continue to march forward as long as he knows we believe he can – but it is hard. One of the speakers at the conference shared some words from his football coach who said “We should take what God has given us and make the most of it, because the only disability in life is a bad attitude”.

Indianapolis Colt's player Dwayne Allen introducing our key note speaker - they have been friends since they were both in the football program at Clemson - his introduction was a tear jerker as he talked about going into the relationship expecting to learn about Down syndrome, but came out with a friend who taught him about what really matters in life.

Indianapolis Colt’s player Dwayne Allen introducing our key note speaker – they have been friends since they were both in the football program at Clemson – his introduction was a tear jerker as he talked about going into the relationship expecting to learn about Down syndrome, but came out with a friend who taught him about what really matters in life.

 

xoxo
Catherine

ps: One more shameless plug – Team Peter Bear is participating in the Colorado Springs Down Syndrome Association’s 2014 Buddy Walk. We invite you to join us as a walker, virtual walker, and/or donor. Here is the link to our team page – you may need to copy and paste this into our web browser if the link doesn’t work for you. Thank you!

http://ds.donordrive.com/index.cfm?fuseaction=donorDrive.team&teamID=5076

 

Eeek…..so long?! Update and Invite!

Yikes – where did the time go?!

Quick update …..

Alexandra graduated from St. Mary’s High School in May. She is now working as an office assistant at NTSOC and will be heading off to Colorado State University in August. The plan is to do her undergraduate in Psychology with an emphasis in Brain, Mind, and Behavior – then moving into a Masters in Occupational Therapy. She hopes one day to work with kids like Peter – and I know she would be great at it!

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Michael completed his Confirmation and wrapped up Freshman year of HS, and was cleared for non-stressful exercise with his knee! Yay! So no sports, but much to his disdain he can now walk the dog again. We really are so fortunate that he is healing well although he still has residual issues with his thigh/hip. We hope they get better and he can pick up with sports in the Fall.

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Jack took silver in wrestling – yay! He wrapped up 4th grade with a 10th grade reading level….wow!……and will read about anything you put in front of him. He is enjoying his Kindle but can still be found with his nose in a good old paperback book. Given the relentless energy he has, it is great to see him chill with a book!

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Tommy’s enjoyed his First Holy Communion, but I think the highlight of his school year was scouting. He had so much fun! His enthusiasm was clear when he pounded the pavement in cold weather collecting food for the local food bank. He collected almost 500 lbs!! Way to go little dude!!

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Peter wrapped up kindergarten and loved it! He will be repeating it again next year in an all day setting as he really needs to catch up academically. He did three weeks of summer school of which i think the highlight was riding the bus. He was so excited! His energy continues to increase post-chemo but he likes to freak me out every once in a while telling me his hip, toes or fingers hurt. Praying he continues in remission! He still goes in once a month for labs given that he is at the start of the new shorter protocol and we need to make sure he stays healthy. This spring he started swim lessons which he loved – but still will opt to play in the little kids pool this summer!

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And last but not least is Gretchen – she is so precocious! She has discovered crayons but likes to color everything the same color and the lines are a lose guideline to which she will not be constrained. Surrounded by brothers and boys in the neighborhood – she is often the little girl in a dress and pretty shoes trying to scale a tree or play set. Her favorite pass time is bossing her brothers around. Not sure where she gets that from!

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On the family side – my father arrived in mid-May. He is starting to make Colorado Springs is part time home and we are loving having him here. It is such a treat!! The kids are all over him and he has been a huge help with our crazy schedules. Now have to work on him to be here longer and longer!

Guess what time it is?! Buddy Walk time!! We are so excited to have Peter do this walk healthy this year – and hope to see him running across the line in his own unique running style (makes us smile it is so cute!). For a second year UnitedHealthcare is sponsoring the Buddy Walk and our Team Peter Bear. YAY! So we invite you to please consider walking and/or sponsoring our team this year. As you all know the Colorado Springs Down Syndrome Association is near and dear to my heart – and we try every year to raise more and more to support such a wonderful organization that offers so much to families in our community and the surrounding community.  CLICK HERE to get to our team page or copy and paste the below link……We hope to see you there!!

http://buddywalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1073387&supid=387665407

xoxo
Catherine