Letters to My Son, Conor

Letters to My Son, Conor

Wednesday, December 23, 2015

12.23.15 - Stop With All The Positive Stuff!

My Dearest Conor,

Hi Monk.... This is not a letter that I am going to enjoy writing one bit, but I need to get this out.

"Your child is at risk of autism...."
"Your child is non-verbal...."
"Your child has autism spectrum disorder...."
"Do this therapy and that therapy...."
"Fight for this service and that service...."

I do everything I am asked to do, and then some. I make my deadlines. I get my paperwork in usually before it's due. I get your evaluations done when I am asked to get  them done. I make sure your pick up and drop off schedule from school and therapy is organized. I make sure you have a trustworthy adults (your grandparents) with you at all times when I am not with you, someone whom loves you and knows you and can tend to your special needs. When you have behavior issues (like you have been having lately) I make your lead therapist aware of them ASAP so we can try and nip them in the bud sooner rather than later.

Conor you are so incredibly smart. You learn and pick up on new things like a pro. I am always hearing hearing how well you are doing, how you are so loving and that your smile is infectious. And as much as I love to hear all these sweet things about you, I really really wish everyone would just stop telling me how cute you are and how adorable you are and how sweet you are. I don't want to hear this right now.

It not that I "want" to hear all the negative comments, it's that I NEED to hear all negative comments. Not from the people on your Facebook page. They don't interact with you on a daily basis. I am talking about your teachers. Your therapists. Your grandparents. I NEED to hear the negative. I NEED to hear all the things you are not doing that you are supposed to. I NEED to hear all the things you did wrong. Things you refused to do. Things you threw. How many times you kicked the table or how many minutes it took for you to transition from one task to another. I NEED to hear the negative. I NEED to hear what we need to work on. I NEED to hear what is working and what is not working. I NEED someone to be fricken honest with me and tell me "this method of therapy is not working, try this".

Your behaviors lately are getting more and more unpredictable. Your anger and aggression is starting to concern me. At 65 pounds and your strength increasing, you could quite possibly not only hurt yourself but people around you. I NEED TO HEAR THE NEGATIVE. If people keep blowing smoke up my ass by telling me how cute you are and how much you love me (which I know you do) and avoid telling me all the negative behaviors you had during the day, how am I to know you are having these behaviors so they can be worked on?

EARLY INTERVENTION IS KEY.... I have said that since day one, but if I assume you had a great day and had no issues, then I assume all is well and there is nothing to focus on (other than the norm). If I am told you kicked the table 10x when you came in from the playground, you hit the wall 10x when you arrived home for speech, or threw a chair 4x before being relaxed enough to complete a task during occupational therapy. I can see a pattern and your lead therapist can see a pattern that you are having issues w/ transitioning from task to task or environment to environment. What is behind this particular type of behavior and having issues w/ transitioning? It's called ANXIETY.


Conor having anxiety is not fun. I have at times had my issues w/ anxiety and anxiety attacks. I know my anxiety issues and what causes them are much different than your anxiety issues and what causes them, but the fact remain is that ANY anxiety issues are not fun.

So what can be done? Well, we modify your therapy slightly and put some visual aids in place to TRY and help you to understand things better. Since your anxiety seems to be caused by various types of transitions, we focus on that right now and see if these visual aids can help. Baby you have so many other struggles you deal with on a regular basis, from sensory issues, to communication this fricken anxiety issue was the last thing I needed to hear tonight, but it makes sense. This is why I NEED to hear the negative and stop listening to all the cute comments and the loving comments. These are all thing I already know about you. I know you are beyond cute, I know you are incredibly loving, I know you love me and communicate that to me in your own "Conor Way", but if I am going to help you, I NEED to know everything and that includes the negative.

I don't mean to knock ANY of the progress you have made, are currently making or will continue to make. Every single little step you take forward is progress and I am over the mood proud of you for it. So incredibly proud Monk, but I NEED to hear the other stuff right now.

It's 2 days before Christmas and as much as I would like to sit here and tell you a goody goody gumdrop story about how this is going to be an amazing Christmas, it's not going to happen. These last couple weeks have been rough. Between stresses and deadlines at my work, money worries, insurance worries, therapy worries, behaviors issues with you, and some other personal things going on, it is really hard for me to get in to the Christmas mood this year. As you grow up and learn more about me, you will see how me being in this "Ba-Hum-Bug" mood this year, is not the norm for me. But, things happen. There is always next year to look forward to!

No matter what mood I am in, just know that I AM PROUD OF YOU and I AM PROUD of all the progress you have made over this past year. We still have a long road ahead of us Monk, but if we stay focused on what we need to work on and listen to your oh so wise BCBA, I think we will be fine.

I love you Monkey.

All my love forever,
Mommy

Sunday, December 13, 2015

12.13.15 - Holiday Emotions

My Dearest Conor

Hey Baby. I hate long weekends like this when you are at your father's house, but he is bringing you home in a little bit and I will be taking you over to Auntie's house to get a much needed haircut. You gotta look slick for your birthday party next weekend! God I can't believe you are going to be 6 years old. It seems like just yesterday I was stressing about whether or not I was finally going to be pregnant and now I am going to be celebrating your 6th birthday.

Conor I wish you knew what this season was all about. I wish you understood why everything is all decked out in lights and red and green. I wish you knew why I am so all about traditions like the tree, special ornaments, Santa, baking etc. I can't help but wonder if you will ever understand. I can only dream that one day you will "get it" and one day you will be able to experience and create new traditions with a family of your own. I am well aware that your future is unknown and as much as that scares the living shit out of me, I have to learn to accept the fact that there are just some things out of my control. That is not easy for me to do.

One thing that is within my control is providing you the best opportunity possible to make a successful and independent future a reality rather than just a dream of mine. Besides making sure that you are in the best school possible for you (no matter how far away it is) and making sure you have the best possible therapy you can get, I am doing everything I can to set you up on some one on one playdates. These play dates are designed to help you with social situations, communication, sharing and so much more. You had your first play date with your friend Jayen last week. I was shocked, and I think your therapists were shocked as well that it went as smooth as it did. You both played trains for a good 30 minutes. You had a snack and ended playing independently in your playroom while you watched one of your favorite "My Baby Can Read" videos. We have another play date set up for this coming Tuesday as well. I am excited we have these opportunities with your friend and also excited that your therapists are going to be there to supervise, take data and help prompt here and there. This not only is a good opportunity for you, but also your friend Jayen. Jayen has autism, but he also has epilepsy. He is an amazing kid and is delayed just like you. Although his speech and communication is more advanced than yours you both still have your special ways of communicating. I love seeing you too play together. I warms my heart.

  

Conor, I need to sign off here so I can go take a shower. You will be home soon and we are going to go get your haircut, get some dinner and then check out some Christmas lights! But I do want to take a quick second to apologize to you first. I know Mommy has been somewhat of an emotional wreck the last couple weeks. You have had some changes in routine (yet again) and are doing the very best you can to cope with those changes. I have also been doing my best to cope with your changes, your new behaviors and so much more. I am sorry if I am sad sometimes, I know you don't understand this emotion yet and it's time like this that I am VERY grateful for that, but I still feel the need to apologize. I have been under a lot of stress lately and there is a lot going on during this time of year in general. Top the seasonal changes off, I am really missing your sister lately (as of today, it has been 995 days since we have last seen her), there are things going on at work, decisions about our future that need to be made and memories that just keep popping up here and there. Needless to say it is just an emotional time of year for me. For some reason, this year seems to be more emotional. Just know I am doing my best to be "present" and I will ALWAYS be here for you. I love you so much Monkey.

All my love forever,
Mommy













Wednesday, November 25, 2015

11.25.15 - Be Grateful

My Dearest Conor,

As we start off Thanksgiving Eve, I thought I would start off by telling you a few things that I am grateful this year. First and foremost, I am grateful for you, my son. You are my everything. I hope, no matter what happens, you will always know this.

I am grateful for your grandma and grandpa Mallory and Thompson. Without their help, I would not be able to do everything I do.

I am grateful for your AMAZING therapy team (Pam, Lindsay, Lisa, Mandi, Mackenzie and Samantha). You have come so far with the help of these amazing people. I look forward to seeing how much more you progress with the addition of your two newest therapists.

I am grateful for your school, your teachers, and your aides. Again, the progress you have shown is everything I had hoped for.

I am grateful for my AMAZING Boss and grateful that I have a job I love.

I am grateful for friends, old and new. Friends I am growing to trust. Friends who I am hoping I will be count on in the near future, because I am going to really need them.

I am grateful for family members who say "Yes" on those rare occasions to actually do ask for help.

Oh Conor.... Another year is almost over and another year goes by where you are not talking. But you are really close. You can almost say "mom" and I look forward to the day that you can look into my eyes and say "I love you."            

All my love forever
Mommy                                  






Monday, October 26, 2015

10.26.15 - An Emotional Day

My Dearest Conor,

It's 230 in the morning and you have just woken and crawled into bed with me. I was awake, watching you in the monitor, toss and turn, knowing that it wouldn't be long before you were in here. Not sure why I was awake, just a lot on my mind I guess.

This past weekend was your walk weekend. You were not there. I was, and not having you there was very hard. I saw lots of familiar faces, every single one of which asked me "Where's Conor?" You are so incredibly loved Monkey. But yeah, just being there in general was emotional, but the fact that you were not there made it even more emotional.

Soooo many people were at the walk. An estimated 22,000 to 25,000 people to be exact. 1.4 million dollars were raised, 1/2 of which is guaranteed to stay here in our state to benefit SARRC and even more money available to stay with local grants.

I was also the official photographer again this year and had some amazing people helping me. Andy (your future father in law) helped again, then there were two new friends of ours Christine and Shannon. Shannon is Gavin's mommy from Buddy Baseball. And then there was Dana who flew across the country just for the walk and to help me and support you.   I don't know what I would do without Dana, Monk. She helped Mommy a lot this weekend and not just with the walk. She kinda put Mommy in her place and told her to stop being dumb. On top of being schooled by Dana, we got to see Jamie and Victor and Aunt Cookie and Uncle Dodie and best of all....  You got to play with Mateo twice and also last night when Caleb and Isaiah were there. It was very clear just how much you missed them all. You flapped your hands so much from excitement I thought a couple times there you were going to get some air and start flying around the room. I think it was made clear too to Dana and Jamie moving to Jersey was a mistake. I see them moving back here before next summer, if not sooner.

Then on Saturday, we went over to Jayen's house where Nicole cooked breakfast and you played, mostly on the stairs, but you played. Nicole made this huge spread, it looked like something out of a Foodie Magazine. I was having some issues just before we got there and was just a bundle of nerves so I wasn't really in the mood for food, but I did take a little of each of her dishes and it tasted even better than it looked. Nicole really did a great job and it was an honor to be there.

Well Monkey. It's now 3am and I guess I should wrap this letter up and make another attempt at sleep. I just wish I could just stop thinking long enough for my brain to go into sleep mode, it's not easy. Been a rough weekend and it's only going to get rougher, but I will get through it. I will find a way Monkey.

Good night, sweet dreams.

I love you
Mommy

Wednesday, October 21, 2015

10.21.15 - So Proud

My Dearest Conor,

Hey Monkey. Been a while since I have written you a letter, things have been just a tab bit crazy. Work is really keeping me on my toes, plus this new organization I have started, top that off with everything wrapped around you that keeps me busy. I wonder how I manage to still stand some days, but staying busy is so much easier than the alternative.

Since my last letter to you, you started a new school. From all reports and seeing your own actions when we head to school in the morning, you seem to really like it. I guess we will find out next week just how much you like it when I attend your parent teacher conferences.

Since my last letter to you, you lost another therapist. Felicia chose to pursue another line of work. I have interviewed 3 and decided on 2 and they should be starting the pairing next week. Mandi is of course still part of your team, sorry kid, you are stuck with that one! :)

Since my last letter to you, I attempted a gluten-free way of eating with you. I didn't see a lot of changes, except for in my bank account, but when you got sick and were unable to keep anything down I had no choice but to give you whatever you could keep down and that just happened to be regular crackers and pretzels. After that, I kept you off the GF way for about 2 weeks in which it was brought to my attention that your focus was off again. So maybe this GF thing could be helping w/ your focus. IDK. It was decided that I was going to try  the GF again in November, but Monkey, I will be honest with you, it is soooo expensive and you don't eat 1/2 the food I give you and you end up throwing it away. It's like crumpling up money and tossing it in the trash. Will just have to see how things go. I can tell you that  you did NOT like any of the GF foods. None of it!

Since my last letter to you, you started and completed season 4 of Bambino Buddy Baseball. This season for some reason was a bit rougher than last, IDK if it was all the other changes in your routine (starting new school, losing therapist, GF way of eating, etc) or what, but you had your good days and you had your bad days. But overall, you continued to make progress and that is all that matters to me. Coach Matt came back to coach, you got to play with Jayen again and meet some new friends too. An unexpected bonus that came out of  this season was Coach Matt's wife, Nicole ended up taking control of the PA system and did an amazing job of announcing the entire season. I made her an award for her efforts as well. She is quite the character.

Since my last letter to you, you have found this new way to accentuate your verbal sounds. We call it "duck lips" but whatever helps you, I don't care what it looks like or what we call it. It is helping you to verbally say so many things, including "Mom". Soon baby.... I will hear you say this soon. Once that happens, it won't be long till I hear "I love you Mom". Fingers crossed.

Well, I need to wrap this letter up, need to go post in mommy's blog now. Read some blog posts from someone last night and it kind of inspired me to get back in here. I am sorry it has been so long since my last letter, I will try really hard to make sure I get in here more.

Proud of you Monkey. You have made so much progress over the last several months, keep up the good work baby. I love you.

All My Love, Forever.
Mom



Saturday, July 4, 2015

07.04.15 - Days Like This SUCK!

My Dearest Conor,

Hi Baby.... I wish I had pictures to post of you watching fireworks. I wish I was able to see the look on your face like I saw when we were at Disneyland. You loved the fireworks and all the colors, your face lit up even brighter than the sky. But yet again, on this 4th of July (just like last year) it just worked out that it is your weekend with your father and I won't have the opportunity to experience that with you.

It's times like this that not only do I feel sad for not being able to experience these things with you, but also the bitterness towards your father that manages to creep up on me again for him putting us in this situation. Been a little over 2 years now and I honestly don't know if that bitterness will ever go away but I do everything I can to not show you that bitterness and I will continue to hold it all in. Holidays that needs to be shared now, weekends that I am without you, makes it so much harder. BUT......... It is what it is, there is no going back and we move forward with what we have. You and me Kiddo.


I hope you are having fun with your father and your Great Grandma today. I know you love playing in the play pool, climbing on the swingset that Great Grandma bought for you and your cousin, playing with your sticker mountain. I know you are going to see your Grandma and Grandpa Thompson too and love that you are able to have such an amazing relationship with them. You know Baby, not many kids are as lucky as you are. When some mommies and daddies go their separate ways, sometimes they don't get to see all the people in their family. Not you though. You are a very special little boy and you are soooo incredibly loved.

The love a parent has for their kids is indescribable. The love I have for you (and your sister) is what keeps me going and reminds me every day to take another breathe. I know in my heart, one of these days, your sister will come home. Just as I know in my heart, one of these days, you will talk, you will tell me you love me, you will even tell me to shut up (and I can't wait for that moment), one of these days you will tell me everything that you have been trying to tell me with your eyes for the last 3 years.....

Conor I vow to you to make sure that you have the best life, the best childhood, the best opportunities that I can possibly give you. You see me struggle sometimes, but do understand. You may see me cry sometimes, but you don't yet understand those kinds of emotions (which at times I am grateful for). But no matter what, no matter hard things get, or how much sleep I lose, I will always love you and I will always fight to make sure you have everything you need to succeed, now and in the future.

I love you baby. Happy 4th of July.

All My Love, Forever.
Mom



Wednesday, June 10, 2015

06.10.15 - California Vacation 2015

My Dearest Conor,

Hi Baby! Ohhh we had soo much fun in California. Original intent over a year ago was for lots of friends and family to join us, to celebrate my 40th birthday, but it ended up being a small group of you, me, Mandi and Content. Our little group has soo much fun!

You got to visit w/ Jessie and Buzz from Toy Story


You had a blast on the Merry-Go-Round at California Adventures


Content, Mandi, you and me on the tram headed to Day3 at Disneyland 


You and Content watching the light/firework show at California Adventures


You loved The World Of Color show at California Adventures 


You were sooo excited to see Woody from Toy Story.  


We got lucky. Went to see Mickey Mouse at his house in Toon Town, but he wasn't there.
We did catch him as we were leaving California Adventures though!


Waiting was not your strong suit. This was you waiting for the World of Color show. 


Memorial Day weekend..... Proved to be a lot of people. That plus was the first weekend of
the Diamond Celebration (60th Anniversary of Disneyland) 


Hi mom! This was our first day at Disneyland. You still didn't quite know where we were going. 


Content, Me, Mandi and of course you as we walked into the Disneyland Park. 


We even got to visit with our friend Shannon from Autism Live! Stopped by the studio to check it out
and she ended up doing an interview! Was awesome to have lunch w/ her and Kelby



Here is the interview Shannon did while we were visiting California. 




Another picture of us on Day 1, on the tram, heading to Disneyland. You were sooo curious....


Mandi took you on Splash Mountain at California Adventure. This was probably your least favorite ride, but you still seemed to have fun!


You waiting for World of Conor. You were soo tired.


You got to visit with Donald Duck too! 


Here you are with Jessie from Toy Story, before Buzz came out.


You and Mandi on one of the many ride we took you on. 


Yeah.... You tuckerd out for about an hour. Sooo glad we had gotten you that stroller.


HHMMM... You sure did sleep a lot! LOL This was you and Mandi.


You trying to sleep as you waiting for World of Color, but too much going on. 


Mandi here readying your favorite book "Chicka Chicka Boom Boom"


We attempted to take you to the beach on our last day. Each day prior was drizzle filled and overcast, so we waiting as long as we could to get you some beach time in the hopes the weather would cooperate. We did take you to Long Beach (which I will never go back to - it was a crappy beach) but it was still over cast and a bit windy, making it a little cold. I am definitely going to make plans to take you back again before school starts though to get you some REAL beach time at a REAL beach! 


Oh this was fun! You really liked the Cars Ride at California Adventure. Can't say any of us liked getting stuck on the ride though. Luckily we probably only sat there for about 10 minutes. 


You saw Pluto too! 


Cousin love! Was so awesome for her to spend time w/ you. 


More pics of you and Woody. High Five! 


No fear.... That should be your nickname! This was you and Mandi on the ferris wheel at California Adventure. You definitely are not afraid of heights! 


Yeah..... THIS was a memorable dinner....... You threw up all over the table, the seat, yourself, and me! Was good times right there. Even better? We had used your spare set of clothes to change you when you got off the water ride w/ Mandi. I had to take you out of the restaurant and walk about a block to the cloests bathroom to clean you up, and then I had to go find and buy you new clothes. All while Mandi and Content finished (or tried to finish eating a rather expensive meal) as they watched the staff clean up your mess. Ehhhh it happens. I just appreciate Mandi and Content being such good troopers during that fiasco.  


Pluto signing your autograph book. 


You loved the fireworks too. I can't wait to take you to see fireworks on 4th of July!!!!


Content literally picked you up for both of the shows so you could see better.
She is like Superman, but a woman! :) LOL 


Yes Monkey. We had soo much much! I can't wait to take you back to the beach and back to Disneyland! 

I love you baby. 

All My Love, Forever.
Mom

Wednesday, April 15, 2015

04.15.15 - Your Major League Baseball Debut

My Dearest Conor,

Hi Baby! Ohhhhh what an experience you just had. Got a text from our friend Amy who used to work for Autism Speaks and she asked if you would be interested in throwing out the first pitch at the Diamondbacks game during Autism Awareness Day....... You honestly thing I would have told her "no"? :) 6 weeks later and after a little practice, you did it!!! I was sooo proud of you monkey. You have family and friends in the stands cheering you on, you had all your therapists on their field supporting you. It was a magic moment. You have come sooo far Conor. I am beyond proud of you Baby.

Here is the video I put together of your special day. Along with some photos below it. So proud!


























I love you baby. 

All My Love, Forever.
Mom