It’s A Cruel, (Cruel ), Cruel Summer!

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Summer.  I hate summer.  There, I said it.  I know, HATE is a strong word but I feel strongly about my dislike for summer.  I didn’t always hate summer.  In fact as a kid, it was my favorite time of year.  I remember we always had a family vacation planned, trips to the beach often and we made a family trip to Raging Waters (a water park) every year!  I remember long days of having friends over jumping on the trampoline and sleep overs and just over all fun!  So naturally when I became a mom I had future plans for FUN summers filled with vacations, beach trips and a house full of my kids and their friends.  Well, my summers are definitely not like anything I imagined…and sometimes (well, pretty much every day ;)) I have to dig deep to smile and appreciate the summer days despite how different they are from what I wanted them to be.

Our summers aren’t filled with beach trips, sleep overs, and definitely no vacations planned!  Our summers are mostly spent at home with lots of playing in the hose and made up games in the back yard!  With a little drive through McDonalds here and there and a whole lot of meltdowns!  We TRY to make a beach trip or 2 if we are lucky, but going to the beach with Kyle is a lot of work and he only lasts maybe 2 hours-where the other kids want to stay all day!  And driving 2 hours to only stay 2 hours and then drive home 2 hours never sounds like a great idea!   A couple of summers ago, I got brave and paid Erika to come along with us on a trip to big bear with my family for 3 days.  It went ok but on day 2, I ended up in tears after a long day of dealing with meltdowns.  I swore I’d never do a family vacation  again-and I am still in that mindset! haha  Having other kids here adds more noise and isn’t in Kyle’s routine, more often than not resulting  in extra meltdowns, so sleepovers are rare and having a house full of extra kids doesn’t happen often.  Soooooo, that leaves my kids with not many options but somehow we have managed to survive every summer…and I have a feeling we will continue to survive!  My kids are champs, I can’t say that enough.

Sometimes, I find myself looking at social media becoming envious of my family and friends, as I see their amazing pictures of summer vacations, lake trips and beach trips or just their daily outings that they are experiencing with their families.  When Kyle was diagnosed all those years ago, I went through a grieving process (another blog post for another day).  Because when your child is diagnosed, you realize there are things in your life that you have to give up.  Summer is something I lost when I became Kyle’s mom.  So every time summer rolls around I find myself in a bit of a slump and have to pull myself up.  And sometimes that means I have to pretend to smile when I wanna go upstairs and cry about the summer I wish I could give my kids.  But that’s not an option so instead I am going to try to make the best of another summer and appreciate what we DO get to do as a family.

 

 

 

 

 

I think I’m on the spectrum too! 

Kyle will start his high school journey in just a few short weeks. I have had so much anxiety and too many sleepless nights leading up to this big transition! I have tried to mentally prepare myself for this change the last couple of years, but how can one really *really* be prepared for that first day when the bus pulls up to your house and you send your big 13 year old non verbal, anxiety ridden, autistic son on his way to a big different school.  With a different classroom,  a different teacher and different “aides”, and different classmates. And a completely different schedule.   How do I prepare my heart for that first day, that I know will ache if he starts to meltdown because things are much different than he knows? I’m not sure…I just hope I’ve done enough to prepare us both.

He has been at the same elementary school since preschool…that’s 10 years of the same. We have been so lucky with all those who have been a part of Kyle’s elementary years. We have formed lasting friendships and I know they care deeply for Kyle and his success.  This last year Kyle’s teacher and the principal (both whom I consider friends) both walked (and talked 😉 me through the process of transitioning to high school. They both came with me to tour the high schools and gave me their honest opinions. Then when it came time for Kyle’s transitional IEP with the high school rep, Kyle’s teacher was there to give very specific notes on how Kyle works and thinks and processes. She knows Kyle probably as well as I do. After each step toward this change I have felt a little better.

I have said lots of prayers for comfort through this process and feel like every single time I have needed comfort it’s been there. I have been put in contact with the right people through this hard process and they have reassured me with the exact things I’ve needed to hear. The high school staff has been more than accommodating and has been so kind responding to all 500 of my emails voicing my concerns! His new teacher has even called me and text me to set up a time for her to meet Kyle and myself before he starts summer school (seriously? People who work in special ed are amazing)! A Facebook friend contacted me letting me know her husband would be working in Kyle’s class-they came by and met Kyle this last week so he would have another familiar face and so they could get to know Kyle!  I have learned that having people who can “hear” and understand the many “voices” of Kyle eases my anxiety and reassures Kyle as well. So I’m hoping when he walks through those different doors and sees some familiar faces it will help put his anxiety at ease.

As with anything new and different practicing *sometimes* helps Kyle…so we have been driving to the high school. We talk about the new school while we drive there. We talk about riding on the bus. We point to the new classroom. We plan on getting pictures of the teacher and other adults in the classroom to show him as well as a picture of the bus. So far he has reacted positively! And I’m hopeful with us practicing it will help relieve some of his anxiety come that first day.

If I have learned anything about Kyle it’s that people will fall in love with his goofy grin and his infectious laugh in no time. And it won’t be long before his new teachers are new friends! And I’m sure he will learn his new schedule quickly….and learn the ins and outs of his new school….and get to know the personalities of his new classmates. I know all this. Its just getting past those first few NEW days.

Sometimes I think I fall on the spectrum with my transitional anxiety and my fear of change (Poor James)! Kyle and I are quite the pair! I hope that I have prepared us both well enough that when that bus pulls up to the front of our house in a few short weeks, neither one of us has a melt down! Here’s to being hopeful! 😬💙

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So long 8th grade

Kyle graduated 8th grade today. It wasn’t like my 8th grade graduation-an auditorium filled with lots of parents and siblings and a graduating class of 200+. This was a graduation in a cafeteria filled with maybe 15 parents and siblings and a graduating class of 6. SIX. But it was by far the BEST 8th grade graduation I have ever attended. And maybe its because Kyle is mine, or maybe because I watched him beaming with pride on the stage. Or maybe because I am going to miss this school that took the time and put in the effort to put on a graduation ceremony for my special boy. Maybe its because as I listened to our principal (who I am honored to call a friend) speak about these kids, I could hear the pride and the love she had for them. Maybe its because I watched as Ms. Jan (one of his favorites) proudly stand next to her boy and let him grab her arm when he felt anxious (and even bite her). Or maybe it was watching Mr. Chris play with Kyle after the graduation and Kyle light up and laugh as they wrestled. Maybe its because I am so humbled to be able to experience and have my kids experience special moments like these for their special brother, that most people don’t. Maybe its because once again, through this graduation, I was reminded how truly lucky I am to be Kyle’s mom. Maybe its all these reasons that made it the best. But I will forever treasure the moment of pride I felt, as Kyle was helped across the stage to receive his 8th grade diploma.   ​

I Can Do Hard Things

I think it’s safe to say that most parents want the absolute best for their kids.  I am no different.  I want all my kids to be successful and be the best version of themselves.   Sometimes that means work on the parent’s part.  Sometimes that means a lot of extra work when it comes to making sure a childlike Kyle gets the absolute best.  Like many things that come with Kyle’s diagnosis, it can be exhausting when you have to fight constantly for your child.  But it’s a fight worth fighting.

This last month has been a difficult one.  Lots of changes are taking place in Kyle’s life which leaves me super emotional.  I’m scared and nervous, and anxious and trying to stay hopeful all at the same time.   It’s so hard.  I have wondered the last month where I’ve found the strength, Why I haven’t gone upstairs and curled up in a ball and cried til I ran out of tears to cry.  Well, my strength ran out on Friday.

Usually Fridays are difficult.  It’s the start of the weekend (not my favorite), I never know how the transition of James and the two older boys coming home will affect Kyle (will he be excited to see them? will it be too much and will he have a meltdown?).  And this Friday was particularly stressful because James was going to come home with the boys, pick up Cody and leave to go camping overnight.  I knew Kyle was going to struggle with this, it was way out of the routine.  Kyle has a hard time when we are in any type of hurry (super inconvenient)…it causes him great anxiety (this has taught me to NEVER run late, like ever.  I know if I’m late I have to play it cool otherwise Kyle goes into shut down mode and won’t budge.  Super awesome)!  Aaaaaaand to add more chaos, Zack was here, not Erika. 

Zack has come in the last couple of weeks by himself and it has been rough.  His personality is very different than Erika’s.  His personality isn’t as strong.  He isn’t a take charge kind of guy.  And Kyle has learned this quickly about him.  With this knowledge, Kyle has slowly started to run the show with Zack.  Every evening after session I have given Zack feedback and he is really good at taking the feedback.  He is super nice and tries so hard.  To be fair, he came into this with very little experience but was eager to learn and is super smart.  But he is still very shy and quiet and not very forceful when it comes to Kyle, despite my urging him to be more commanding with Kyle (because that’s what he needs).

So Friday was hard.  I was already frustrated as soon as the session started because he was losing control quickly. And I saw Kyle taking over and Zack doing little to take the reins back.  Zack began to panic and Kyle doesn’t do well when you panic,  I stepped in several times (which I have no problem doing but I was controlling the session, not Zack).   When it was time for the session to end I was more than ready for Zack to leave.  I was starting to feel like having Zack here was more stressful and not beneficial to Kyle.  James came home and was rushing to get out of the house with the boys and all I wanted was to cry to him.  I mentioned my concerns quickly to him and he validated me the best he could with the limited time he had.  Out the door he went and instantly the tears started coming. 

I decided to call Ciarra and tell her how I was feeling.  She listened as I cried and understood all my concerns.  She told me that in the end it was my choice whether to keep Zack on or let him go.  She told me to take the weekend and think about it, talk it over with James (my voice of reason) and we would talk again on Monday.  All weekend I stressed. I talked it over with James when he got home.  I knew he had all the same concerns that I did about Zack and he reiterated all of them as we talked. But I still couldn’t make the final decision of letting Zack go. 

I knew Zack wasn’t the right fit.  I knew he wasn’t the right fit as soon as I met him.  But like so many times when having to deal with staff or programs for Kyle, I was told this is the best we can do right now and we can train him.  I knew that Erika had put in many hours and lots of hard work training Zack, which added to my anxiety of letting him go.  I struggled with the idea of letting Zack go for fear we wouldn’t have services while they scrambled to try to find someone else.  I fought myself with voicing my concerns because Zack is a nice guy and he was trying as hard as he could.   And I struggled with the thought that maybe they COULDN’T find someone better.  I tried to talk myself into keeping Zack because it would be easier on everyone…except Kyle and me!

Monday came, and I knew that the right decision was to let Zack go.  He isn’t the right fit for Kyle.  I know this. Kyle deserves the very best and unfortunately Zack isn’t the very BEST for Kyle.  I called Ciarra and told her my decision.  I wrote an email to the offices and explained my position.  To which I received a response stating Zack would be pulled from Kyle’s case effective immediately.  I felt relief instantly, which confirmed to me that I made the right decision.

I feel like being Kyle’s mom has pushed (shoved) me out of my comfort zone more than I’d like, and probably will continue to do so.  I am a people pleaser to some degree, and I don’t like (probably more like HATE) having to “complain” or “fight” for what Kyle deserves..  I want to be liked and I worry about what others will think.  I don’t like being “that mom”.  It’s hard for me to tell someone that they aren’t the perfect fit for Kyle when they have tried really hard.  Come Wednesday its going to be hard to have to explain to Erika, who I have been holding back my feelings about Zack for fear she would get mad because of all her hard work, why I made the decision to let Zack go.  Being Kyle’s mom, is hard when he’s having a meltdown.  It’s hard when he’s throwing up.  It’s hard knowing he can’t form a two word sentence.  But it’s also so hard having to go outside of where I am comfortable, and fight for what is best for Kyle. With all that being said, I will continue to “fight” until we find a therapist that is a perfect fit for Kyle….because he deserves it and I want what is best for my son!   And because I can do hard things.

 

 

 

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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