One Chapter Ends and Another Begins…..

 

Kyle had been receiving ABA services (behavior therapy for autism) for about 2 years when his case supervisor sat me down in my dining room and told me that he was out of ideas for Kyle and I should probably look into switching to another company if I wanted to continue services for Kyle. What the?!!  I felt like he might as well have said, I’ve given up on your son, so see ya later!   The process to switch companies was a long process that would leave Kyle with no services for a few months.  But at this point I had no choice.  We needed a team that was willing to put in the HARD work and time Kyle required.  So we started the process of switching and I crossed my fingers and prayed I picked a better company this time around!

I met Ciarra at Panera Bread for the first time.  She was a cute, young, bubbly, but YOUNG girl.  My first impression of this new case supervisor of this new company, was she’s so nice…..but is she up for this challenge?!  She spent a good 2 hours asking me lots of questions about Kyle and listening intently to me describe his behaviors and the issues we were struggling with as she took detailed notes.  At the end she looked me straight in the eye and said, “this is an extremely difficult case and it’s going to be really hard finding someone that is willing to endure the challenges Kyle will throw at them every day.”  I immediately felt myself tear up, hearing the words ‘your son’s case is extremely difficult” is hard to hear-even though I am fully aware of how hard he is!  She reassured me before leaving that she was up to the challenge and she was confident that she could find a therapist that would be a fit for Kyle.  I left feeling hopeful and discouraged all at the same time-if that makes sense.

A few weeks later Ciarra called to let me know she had a therapist in mind that might work and wanted all 3 of us to meet to discuss Kyle.  We met at my house while Kyle was at school.  Erika walked in…again she was so YOUNG!!! We sat at my kitchen table and Ciarra started to tell Erika about Kyle and all his behaviors.  I found myself slumping down in my chair as she spoke!  How would anyone want to take this case after hearing that Kyle is super aggressive, he throws up, he throws himself on the ground when having a meltdown, he strips, he’s a big boy and list kept going.  Erika sat with a poker face taking notes as fast as Ciarra was talking.  I couldn’t read her but I was having anxiety just listening.  I knew she was gonna walk out and tell her supervisor, Ciarra, there was no way she was taking this case on!  But to my surprise, by the end she asked when she was starting- with her smile and nervous laugh!

I met with Ciarra several times before Erika started.  I learned all about ABA-the terminology and the theory of it!  Ciarra was great with giving me reading material and applying the principles of ABA directly with examples of Kyle’s behavior so I could better understand why I should react one way or another.  It was important for me to understand so that when Erika and Ciarra weren’t around I could apply it by myself and also when I was helping Erika in the beginning!  It was extremely helpful! One of the many reasons Kyle is so difficult is because his behaviors serve many purposes.  When he throws up it could mean he is anxious and is physically sick.  In that case the appropriate way to respond is to reassure him he’s ok and direct him to a place to throw up.  But if he throws up because he is trying to get out of doing a non preferred activity like getting up and putting something in the trash can, the appropriate response would be to tell him he’s all done and clean him up and follow through with making him throw the trash away.  He is like this with every behavior.  So, unless you know Kyle and how to respond to the function of the behavior it’s hard to respond to the behavior correctly.   (This process has taken Erika and I years to master!  It took many years of trial and error.  ABA is kinda complicated and takes a lot of practice but when its applied correctly it can help tremendously!

We decided that the best approach with Kyle would be to have Erika come every day and build a relationship with him.  Place no demands on him.  Just be his friend. Kyle is very anxious and relies heavily on those people that he trusts to know what he is needing at any given time.  So I knew it was going to be crucial for Erika and Kyle to establish a relationship of trust before she would ever get any sort of cooperation out of him.  That first day she showed up I knew she was different than anyone else.  She had this determination and drive about her that I knew was going to help me and Kyle. 

After those 2 months we met as a team (Ciarra-case supervisor, me and Erika) and discussed what we would do next.  Kyle’s list of things to “get done” was a mile long…so we made a list of the most important things to accomplish and came up with a program for each of those things.   One of the big things was getting him to appropriately play with something and transitioning back and forth to preferred and non preferred activities-with no behaviors!  Sounds easy enough, right?! If Ive learned anything its, nothing is ever easy with Kyle!  Haha

Monday came and we were ready to go!  Or thought we were.  That day was so hard.  I cried multiple times as my son bit and scratched and hit and kicked both myself and Erika every time we tried to get him to do anything.  That first day I told her I wouldn’t blame her if she didn’t come back as I fought back tears.  It was hard-physically and mentally.  But we learned a lot that first day, we made changes to our approaches and continued to tweek things for weeks until we got into a routine that seemed to work for Kyle.  I wanted to quit almost every day, I can only imagine how Erika felt.  But every single day she showed up and put in 100%.  She still treated Kyle with love and respect despite the bruises and bite marks he would leave her with day after day.  She kept me going…She pushed me…she made me feel like I could keep going, cuz she was.  But, man, it was so hard…it was exhausting.

After a few months we could see small changes but more importantly we were starting to understand Kyle’s behaviors better so we reacted with the appropriate response which meant we were getting less inappropriate behaviors.  With Kyle, I have learned that his victories are often slow and small but they are victories and need to be celebrated!  Every time Ciarra came into the home (which was every couple of weeks sometimes once a week)  she saw improvement, which made me want to work even harder!

After about 6 months (Kyle was around 9.5) Ciarra and Erika convinced me that Kyle was more than capable of being potty trained.  This task made me ill to think about.  It seemed like more work than I was up for.  But Erika was once again so encouraging and determined to make it happen.  So she rolled up her sleeves and was ready to tackle potty training! And after only 6 months (lots of hard work, lots of tears and lots of accidents), Kyle was fully potty trained.  There is no way I could have done it without Erika cheering me on and helping me every single step of the way.  Erika constantly gets me out of my comfort zone and pushes me to do hard things with Kyle!  She is ALWAYS willing to try new things no matter how hard it is. 

A few years ago my mom planned a family vacation to Big Bear.  Having Kyle restricts us from doing any type of family vacation. He doesn’t do well out of his routine and home is his comfort.  Erika offered to come with us and help in any way she could so that we could participate in this family vacation.  It was the first family vacation we had ever taken!  She is always willing to go above and beyond to help me and to help Kyle.

Being a mom to a child like Kyle can be lonely.  Other moms can’t relate.  They just can’t.  Being a mom to Kyle is much different.  I have friends that I love and adore but they don’t understand the struggles that I endure with Kyle.  And sometimes that’s hard.  Having Erika has helped me in so many ways, she will probably never fully understand the depth of gratitude I have for her.  She is a friend that understands to some degree like no one else does.  I can text her about a meltdown any day of the week and know her response will be filled with true understanding.  She can walk into my house and see my face and know it’s been a rough day, instantly she takes over Kyle duties without me saying anything.  For the past 5 years Erika has been my strength.

This last Monday was Erika’s last Monday.  She will only be working with Kyle on Wednesdays at my moms and that will be ending very soon too.  As I type this out my eyes are filled with tears.  I know that because of Erika pushing me, I am a better mom to Kyle.  I know that our family is better able to love Kyle because of Erika. And most importantly, I know Kyle is better able to cope in a world that is much different than his because of Erika.  Finding someone like Erika isn’t easy-Ciarra keeps telling me that I was spoiled with Erika!  I am so grateful she sat at my kitchen table that day 5 years ago, listened to how hard Kyle was going to be, and decided she was up for the challenge!  I am grateful that she has come into my home every day for 4 hours for the last 5 years and loved my son despite the challenges he throws at her daily.  I am grateful for the love she shows all my kids.  I am grateful for the 5 years she put into bettering my family.

I don’t know how it will turn out with our new therapist, Zack but I’m trying really hard to be hopeful.  I know that those that have been put in Kyle’s life have all served a purpose,  and I look forward to seeing what purpose Zack will serve in this chapter of  Kyle’s life, but I can’t help but be sad as we say goodbye to the Erika chapter.  kyle and erika

 

 

Where It All Began…..Part 3

I was scheduled to be induced on December 22nd 2005  (still hadn’t heard back from UCLA about scheduling an appointment with a neurologist).  I was super nervous about giving birth again, since my last experience with labor and delivery was NOT easy  (like any labor is-but my labor with Kyle was seriously awful, you guys!).  I was hooked up to the meds and in 5 hours and 3 pushes later, my sweet baby boy, Cody Chase was born.  He weighed a whopping 8lbs 7oz!  The experience was completely different than my last, and I was on cloud nine!  Holding my new baby boy felt different than the last.  The love was still overwhelming and the excitement of holding my new baby was the same, but Cody instantly gave me a feeling of comfort and I felt like things were going to be ok.  I was wheeled into recovery shortly after where I shared a room with another new mom.  We didn’t say much to each other (cuz what do you say)…until the pediatrician walked in later to check on Cody.

I met Dr. Kundell and immediately loved him!  He was kind and super knowledgeable but I mostly liked him cuz he was super sarcastic; and anyone who knows me, knows I love a lil sarcasm!  I explained to him that I really wanted to get home as soon as I could with the holidays coming and I had a 2 year old at home that  was anxious to have me back.  He told me he would do his best to get us home the next day!  As he left, the woman in the bed next to me spoke up through her drawn curtain, “You have the BEST pediatrician!  He was my son’s developmental pediatrician and he was amazing!”  I immediately thought, did she just say DEVELOPMENTAL pediatrician?  Then I thought what if he could point us in the right direction with Kyle?  My mind was racing a mile a minute!  What if he was our answer!

The next morning we were discharged and on our way home!  I thought about Dr.  Kundell all the way home.  I obviously didn’t love our pediatrician at home and I knew Cody would need to see one at 2 weeks old.  So, as soon as I got home I called and scheduled my newborn’s appointment with Dr.  Kundells office, with the full intent of bringing Kyle in with me!  Hoping (and praying) I could *maybe* casually mention his issues and get some feedback!  I’m sure drs love moms like me!  But at this point I was kind of desperate and willing to risk him hating me and/or dismissing my request!

Appointment day came for Cody’s check-up.  Kyle was always difficult to take anywhere.  He always seemed upset when going to stores and dr appointments were NEVER fun especially in crowded waiting rooms.  So I knew I needed help, of course my mom was willing to help and we loaded my toddler and new born into the car and headed to see Dr. Kundell with high hopes and lots of time to plan how I was going to squeeze Kyle into the appointment!

Cody was completely healthy and got a shot or two and given a clean bill of health (yay)!  Right before Dr. Kundell was going to leave I asked him if he had an extra few minutes for me to talk to him about my other son, Kyle.  Kyle was running around in the patient room and making his usual noises mixed in with a few cries due to the enclosed small room we were in.  This kind man picked Kyle up and put him on the examining table only to have Kyle cry and squirm and crawl off of it.  I voiced a few of my concerns; not babbling/talking, gagging on different textured foods, walked late.  He began asking me a series of questions.  One of the first questions he asked was where he got some of his physical features, like his larger ears?  (I never thought my cute baby had large ears so I was kind of taken back by the question! Haha) He said that there is a genetic condition called Fragile X syndrome and  some of the signs that I was describing sounded like it might fit Fragile X, as well as some of Kyle’s physical features (People with Fragile X usually have longer faces, larger ears and have extremely flat feet-all of which Kyle has).  He explained that Fragile X can be tested through blood work but it takes a few months to get the results back, so he wrote out a prescription for lab work and had me schedule an appointment with him to do a full write up of Kyle.  My homework when I left was to do as much research as I could on Fragile X before my appointment.

I went back home and found a single website about Fragile X.  One. I read and tried to understand what it was saying but not everything made sense-lots of medical terms mixed in with a lot of science!  What I did understand was that the signs of Fragile X-most if not all pointed to Kyle.  I knew it was an intellectual disability…and the severity was different for each case. I was anxious for our appointment with Dr.  Kundell the next week, I was hoping he’d be able to answer more of my questions.  And get a better take on if this was truly what he thought Kyle had. 

Driving there I’m not exactly sure what I was thinking….probably just anxious to hear what he had to say.  He scheduled an hour visit for us and no other patients were in his office when we arrived.  Kyle felt more at ease out in the waiting room so that’s where we chatted.  He watched Kyle as we talked and I explained family medical history as he drew a bunch of charts. He explained a little bit more of what Fragile X was and its effects.  He explained that it was a genetic condition and that it affected the X chromosome, so he had gotten it from me.  This meant I was a carrier.  Which meant I had a 50% chance of passing this onto any future children.  He mentioned that about 20% of people with Fragile X also have autism.  As he was talking I began to feel my throat tighten, I felt nauseous and my eyes began to fill with tears.   My new reality was being explained to me.  As tears started to flow he said that he felt confident without the blood results that Kyle had Fragile X.  The first words I could muster up were, “how do we fix him?”  I already knew the answer before he even spoke a word back to me.  There wasn’t a fix. 

As I walked out of that office, my eyes still filled with tears and my heart physically aching, I felt overwhelmed with such grief and sadness and anger and bitterness and fear, and loneliness, and so many other emotions.  My hopes and dreams for my son were just shattered.  Leading up to this visit I still had hope.  Hope that my baby was fine and “was just a boy” and would catch up.  That hope was now gone.  My new reality was setting in.  I got home and just wept.  I wept for the son that would never have friends.  I wept for the big brother Cody would never have.  I wept for the son who wouldn’t  get to attend prom or college. I wept for the son that would never get married or give me grandchildren. I wept for the son I would never have.  I wept for the son that would live with me forever. I wept for MY hopes and dreams for myself that wouldn’t be fulfilled. I wept for the children I wouldn’t be able t have.  I wept for the new hard life I was about to enter into.   

A couple of months after my appointment with Dr.  Kundell, he called me and confirmed what we already knew…the blood test came back positive for Fragile X.  November of 2006  we visited The Mind Institute in Sacramento at UC Davis.  They do Fragile X and autism research. We got an appointment with an amazing dr in the Fragile X community, Dr. Randi Hagerman, where Kyle then was given the 2nd diagnosis of autism and Cody was tested and came back negative for carrying the Fragile X gene.

When you are given a diagnosis such as Fragile X or autism, that’s all you are given-well and maybe some reading material about the diagnosis.  They tell you all about therapies and programs that would be beneficial to your child but don’t tell you how to go about getting these.  You’re on your own to navigate territory that is completely foreign.  In my case, I know that I was led in certain directions that put me in the path of certain people that ultimately got Kyle the programs, therapies, and teachers he’s needed to progress. 

In the beginning of this whole process I remember praying to God telling him, I wasn’t strong enough and certainly not capable of the task of being Kyle’s mom, and immediately an overwhelming feeling of peace and comfort followed by a feeling of reassurance that indeed I was capable of this hard task and that I would be given the strength I needed to endure this.  From that day forward I have continued to find strength I didn’t know I had.  I have been able to do hard things and continue to find strength every single day.  

As I have been able to reflect while writing this short piece of mine and Kyle’s story, I can truly see how far we both have come since that dark day I walked out of Dr. Kundells office, into the elevator, and out into a new and scary world.  I realize now that Kyle never needed “fixing”.  He still doesn’t need “fixing”.  I was given Kyle to “fix” me, “fix” his siblings, and “fix” those who get the chance to work with my son.  Motherhood is definitely much different than I ever imagined it to be.  But I wouldn’t change it for the world because it’s more rewarding and fulfilling than I ever could have imagined.

 Sierra Exif JPEG

Where It All Began…..Part 2

When Kyle was just over a year I went to lunch with my best friend, Jen.  She had a son just a couple months older than Kyle and we would hang out often with our babies.  I knew Kyle was much different than her son.  But I still wanted so badly to believe the pediatrician.  So when she casually brought up that tough subject of Kyle not talking that day, I immediately got defensive and angry.  I told her that he wasn’t talking because he didn’t have to, we gave him whatever he wanted without requiring him to say anything! Huh?  Which is exactly the look Jen gave me!  She tried, in the most kind and loving way, to advise me to seek a 2nd opinion when I shot back with “My pediatrician says he is just a boy and he will catch up.”  Needless to say that lunch ended kinda awkward.  And I went to my car and cried.  Probably because I knew she was right, but wasn’t ready to fully admit to myself that Kyle wasn’t typical.

In April of 2005, I found out I was pregnant with my second baby.  I cried.  I sat in the bathroom staring at the positive test and cried.  This was supposed to be a happy time but instead I was sad and scared.  My 18 month old had major issues but his dr. was telling me he was fine!  By now Kyle had just started walking but wasn’t talking or babbling and still struggled eating anything that wasn’t completely pureed.  I felt so overwhelmed by the thought of having a new baby on top of all these struggles I was having with Kyle.  Not mention the fear of having another baby like Kyle.  But God knew that having Cody would add normalcy to the anything but normal life I would lead.

At Kyle’s 18 month check up I demanded (in my passive aggressive 1st time mom way) answers as to why Kyle wasn’t talking and would gag on foods other than smooth baby food.  The pediatrician finally decided that there might be an issue, and decided the best place to start was a pediatric gastroenterologist.  To rule out any physical problems.  We were able to get in right away to see him.  He scheduled a barium swallow test while a speech pathologist was present, at UCLA.  So that summer my mom, Kyle and I drove to UCLA not really knowing exactly what to expect but hoping this would answer all the questions as to why Kyle wasn’t progressing at the normal pace. 

The test was awful.  Kyle screamed the moment we walked into this busy hospital.  Then we were called back into a cold x-ray room where he was strapped to a bed.  I was pregnant so I was unable to stand in the room to comfort him-so grandma was left with that job.  He screamed as they tried to squirt this liquid down his tiny throat and x-ray him as he swallowed. I watched through a window with tears streaming down my face feeling so helpless and wanting to run in and rescue my baby, as he cried and tried to wiggle his small body free while spitting half of the liquid out.  It was so painful to watch.  When the test was over it left us with unanswered questions and a very mad toddler.

The gastroenterologist met with us a week or so after the test.  He was so kind to me and patient answering every single question I had and spent lots of extra time with me as he explained that there was nothing physically wrong with my perfect baby.  He told me that I needed to get a referral from Kyle’s pediatrician to see a neurologist asap.  He said if the pediatrician wouldn’t do it to call him and he would make the referral himself.  So back to the pediatrician we went after hitting another dead end and feeling so frustrated.

At this point my brain was telling me that something was definitely not typical with Kyle but my mom heart was fighting back telling me he is just fine.  I’m not sure there is a way to explain the emotions I was going through or my thought process. One minute I would convince myself that everything was going to be ok and the next I knew everything was not ok. I guess I was fighting to find out what was wrong but at the same time fighting to prove to everyone that there wasn’t ANYTHING wrong.  If that makes sense?  All while pregnant and hormonal. 

I went into the pediatrician this time feeling defeated and helpless, explaining that I was due in a couple months and needed answers, he agreed and put in the referral to UCLA for a neurologist that day.  I felt somewhat relieved….until I got home and called to schedule the appointment and they explained that there was a waiting list.  They were unable to schedule the appointment but they would call me when an appointment was available.  What. The. Crap.  Another dead end.  And I was due with another baby in 2 months.  So, we waited. 

When I found out I was pregnant I had an overwhelming feeling that I wasn’t supposed to deliver in Lancaster again.  I had talked to my mom about it and she had suggested 1000 Oaks.  Its where she had 3 of us and she still had a dr. down there that she loved.  So despite everyone telling me I was crazy and my husband trying to talk me out of this decision, driving an hour + for monthly appointments (not to mention I was an hour away from the hospital I would deliver my baby), I felt good about the decision and stuck to my guns.  I ended up loving my doctor and it was worth the drives alone back and forth!  Towards the end of my pregnancy my dr. was filling out hospital paperwork and asked me who I wanted as my pediatrician to see my baby his first few days of life.  I didn’t have a clue, he quickly suggested Dr. Kundell-my dr. explained they were good friends and that I’d love him.  So I agreed and thought nothing more about it….little did I know at the time but this, Dr. Kundell would help us in more ways than I’d ever imagine……..Sierra Exif JPEG

 

Where It All Began…..Part 1

11/27/2003
When I was a teenager a new family moved into our ward (our church).  That family had a young son who would flap his hands, mumble things to himself and would occasionally have outbursts in the middle of church. That was my first ever experience with autism.   He was different and I was even a little bit scared of him.  I’ve been known to try to make bargains with God! 🙂 I would pray as I was watching that boy telling God I’d do anything but please don’t give me a child like that. I found myself watching him every Sunday though. I was intrigued and felt compassion for his family.  Looking back, I think I knew deep down that I would someday be blessed with a child like him.

As far back as I can remember, I have dreamed of being a mom.  When asked what I wanted to be when I grew up, my response was always the same….a mom.    I wanted a house full of kids!  I wanted my house to be the house that other kids wanted to be at!  I wanted to take super fun trips to the beach with my car full of kids, just like I grew up doing!  I pictured being a team mom for my sons t-ball team and a dance mom for my daughter!  So naturally when I found out, shortly after being married,  I was pregnant with my first child-I was beyond excited!

My pregnancy was considered normal, I worshiped the toilet the first trimester and was fine into my second & third!  I gained the normal (at that time) 35 pounds.  My due date November 28th was the same my whole pregnancy and my baby seemed to be a healthy baby boy!!!  I shopped and decorated for my baby boy like the excited new mom I was.  I read books and prepared to be the best mom I could.  My pregnancy was a text book pregnancy with no problems!

On November 26th I started to feel pain and thought maybe this was it!  So as any new soon to be parents, we jumped into the car not knowing exactly what to expect and drove to the hospital, in Lancaster, CA.  The labor was painful (duh) and hard (duh) and super long (duh)!!  When it came time for pushing, it lasted upward of 2 freaking hours!  Finally my dr. suggested using the forceps because Kyle wanted to make sure he started his life out with a bit of a protest!   Finally around 4am on November 27th (Thanksgiving day) Kyle made me a mom, weighing in at a healthy 8 pounds even, with RED hair!  I was so beyond happy  (except I wasn’t super stoked on the red hair-figures that’s what I was blessed with! haha!).  Seeing your baby for the first time is a feeling that can’t truly be described with words.  I was in love-red hair and all.

The hospital pushed me to start breast feeding right away.  But true to Kyle, he would not latch on!  He was already so stubborn!  I had many nurses come try to help me but we just struggled…and to add fuel to the fire, he wouldn’t take a bottle either!  Those first couple days in the hospital were rough and I was looking forward to getting home and establishing our routine!  Hoping that being in our own home would help make things a little easier! I had no clue what I was in for!

We got home and Kyle continued to struggle with breast feeding and bottle feeding and hardly slept at all, unless I was holding him- he would just cry.  ALL.  THE.  TIME.  There were many MANY nights I would just rock him and we would cry together.  Many days my mom would come over and we would take him on walks in the stroller with him crying the whole time.  I realized within the first couple weeks that motherhood was going to be much more difficult than I ever imagined.  After about 3 months we finally found a bottle that he would take (yay!).  Little did I know that this was just one of the many battles I would have to face with Kyle!  We were finally able to establish some sort of routine, but he would still cry.  A lot.  And still wouldn’t sleep!  I was exhausted 99% of the time, and probably had red puffy eyes most of Kyle’s infancy!

I remember seeing my friends with their babies and being so jealous.  Their babies would sleep.  Their babies took a bottle.  Their babies seemed so happy.  My friends seemed to LOVE motherhood, and here I was hiding the fact that I was on the verge of crying pretty much all the time, because my baby cried….all the time (I feel like when I say a lot -it isn’t a strong enough word!!!) and seemed miserable.  It was one of the first times in my life that I felt completely alone and truly sad.

At Kyle’s well baby visits I would fill out the questions the best I could.  When it would ask about his milestones I never wanted to say he couldn’t do something, so if he kinda sorta did something, or he did it one time, I’d justify in marking the question as ‘yes’ and try to not think any more about it.  I didn’t realize at the time that I should have been marking no to most of the milestone questions.  But I would watch my friend’s babies reach milestones that Kyle clearly wasn’t and deep inside I knew that things weren’t right with Kyle. Even though I wrestled with myself because I so badly didn’t want something to be “wrong” with my baby.  A few times I would casually ask the pediatrician about missed milestones like crawling and  zero babbling (like nothing) and lack of real eye contact.  This is just to name a few of my concerns at the time.  I even remember asking about autism specifically.  But the pediatrician reassured me that “he is definitely NOT autistic-because look how affectionate he is with you!”   He told me that Kyle was a typical boy and was just slower at reaching his milestones.  Man, did I cling to those words.  For many more months I held onto the hope that Kyle was “just a boy” and would catch up to babies his age in no time.  Because a pediatrician knows more than I do, and he told me my precious baby was just fine….except I knew he wasn’t.

In Mom's arms