Angel Jolly Family

Luke's Big Accomplishment

2012-01-23T08:11:00.000-08:00

Well it's a big accomplishment to me anyway...
Luke for the fist time in almost a year, made it through a whole hour of church last Sunday. We have tried many times to go but one or all of us has had to leave with him because he just couldn't handle the whole situation. It's been a long road but there is light!

I will confess that it did take 7 bags of fruit snacks to keep him still and in his seat. We sat in the cry room right away because he started to have anxiety when we went walked into the sanctuary and started to hum and moan a bit. We chose our seats and I whipped out the first bag of fruit snacks to calm his nerves so he could focus on chewing rather than the stress. Things were calm and perfect but then the choir started to sing. Luke didn't like it at all and started to moan just a bit. Josh was able to calm him with some pressure on his head and big firm hugs. When that stopped working, out came fruit snack bag number two.
As mass began Luke started to calm. He was starting to flap his hands a bit, (which is a good sign he is calming) and he started to watch the procession of Father and Deacon come into the church. All was well until the liturgist started reading. Luke started to lose it a bit and Josh and I both thought the speaker above Luke was just too loud for him so Josh moved a few seats over to help calm him and out came fruit snack bag number 3.

As Mass progressed Luke calmed and the other two were phenomenally well behaved. Luke started to get anxious just before Communion so I took over his care and sat with him on the floor. He wanted to be rocked and held tightly so as I rocked him and put pressure on his head, out came more snacks and I used everyone's jacket to put over his head to help him muffle out the sounds and the stress of all the people. It helped a lot and he was able to sit through the rest of the service.

People did give us funny looks because our son was covered in jackets, rocking himself on the floor, and eating fruit snacks, but it didn't bother me. I was too busy beaming at the fact that mass was almost over and we had made it as far as we did. He did make it through the rest of the service with more snacks, hugs, and rubs. He was a trooper and we couldn't be more proud.

Dear Izzy, Bear, and Luke,

We are in awe of your characters. You each know exactly when to step up for each other and it is inspiring. You each make us proud!
We love you to pieces,
Mommy & Daddy

Happy New Year!

2012-01-01T18:35:00.000-08:00

This year we spent ringing in the New Year at home. We opted out of a traditional sit down dinner and went for hors d'oeuvres and snacks to munch on till the ball dropped.

Luke didn't quite make it awake to the new year. He didn't have a nap during the day and he was just exhausted. He was so tired that he allowed Josh to rock him to sleep. I in turn had to steal him and hold him like a sweet baby. It was bittersweet since he's getting so big and it's a good bet by next New Year we won't be able to hold him so sweetly.

Izzy and Bear were very energetic. They entertained us by playing Disneyland Adventure on the Kinect. I have to say it's a great game for kids. They played for over an hour and we had to make them turn it off so we could get ready to watch the ball drop. Izzy and Bear enjoyed Shirley Temples while Josh and I enjoyed a glass each of yummy champagne. It was a perfect night with our sweet family.

Dear Izzy, Bear, & Lou,

Happy New Year! We look forward to 2012 and watching you all blossom into even more beautiful people. You make us proud. We are truly blessed that God trusted us with each one of you.

Hugs, kisses, and giggles,

Mommy & Daddy

Christmas

2011-12-31T21:08:00.000-08:00

Christmas this year was magical, and I'm not talking about the gifts either. I'm talking about how loving and caring our children are.

We kept up with our normal Christmas Eve schedule of my parent's house in the evening for time spent, gift giving, and then church service at Josh's church. We were a bit worried about Luke and the explosion of excitement that happens, so we headed to my parent's before everyone else, so there was a bit less commotion for him. He and the other two handled the excitement with ease. We enjoyed time with my parents, my mom's yummy posole, and fun gifts for the kids. We had to cut the visit a tad short when the cousins began to arrive. It started to get to be too much for Luke. We were quite impressed with both Izzy and Bear, they didn't think twice about leaving. There were no protests, no cries, no nothing. They simply got themselves together to head home and on to the next activity. We then headed home to get ourselves ready for service at Covenant. Jaron was especially excited to go. He kept saying, "I'm going to watch Baabaa work. I love singing. I'm going to sing like Baabaa." It was the sweetest thing.

When we arrived at church, things didn't go quite as planned. There was no one in nursery for Luke and when Josh tried to take him into the sanctuary, Luke had a bit of a panic attack about going in. I said I would wait in nursery with Luke but Josh didn't want us all separated for service so we decided to leave. I wasn't happy about leaving and neither were Izzy and Bear. We literally walked in, said hi to few people, and walked out to head home. I found myself feeling guilty for not allowing the other two to stay. They never complained about not staying but I could see that they were confused as to why we were leaving.

Josh was a gem on the way. Instead of heading straight home, he headed to Martinez town, where my eldest brother is buried, to drive through and look at all the luminarias. We drove all through the cemetery as well as the neighborhood. It was absolutely stunning. The kids loved the sights too. Although we couldn't worship in church together as a family, visiting my brother's grave site briefly, and saying a prayer was just as beautiful and meaningful.

Christmas morning came fast for me and Josh. Santa left things that needed to be put together so we were up till 3:45a getting all of those things in order. The kids, for the first year ever, awakened themselves. Isabella was first to come to our room, at about 7a and let us know Santa had come. She is such an innocent blessing, instead of asking to open gifts and see what all she received, she climbed in bed with us and cuddled until Jaron and Luke came down to pounce on all of us. The three of them headed to the living room and squealed with excitement about the goodies that were out for them to see. I can't believe they walked past the gifts and went straight to our room first thing in the morning!

Later in the evening we headed over to Josh's parent's house for dinner and gift exchange. It was a lovely evening of food, gifts, laughter, smiles, and love. Luke handled all of the excitement beautifully and Izzy and Bear were happy, appreciative, and excited with all they received.

I am completely amazed at my children. Christmas had to be different this year because of Luke. I am so proud that each one of them handled every change so graciously.

Dear Izzy, Bear, and Luke,

Thank you for a perfect Christmas. I'm so proud of all of you. You each continue to amaze us everyday. Thank you for your grace, your love, and your beautiful spirits.

We love you,

Mommy & Daddy

Snow Day

2011-12-24T09:26:00.000-08:00

These are from the first snow at the beginning of December. The kids had a blast playing, throwing snowballs, and making a snowman. It was an amazing sight to see them enjoy the chilly weather so much!

Slumber Party For Izzy

2011-12-17T09:29:00.000-08:00

Isabella hosted her first slumber party last night. As I type I am listening to the girls giggle and talk about nonsense. They are cute and their logic of things is amusing. Awe to be young and innocent again!

The night didn't go without drama. I guess some girls just can't live without it. Thankfully three of the five were level headed and able to keep the other two in check for the most part. I think next time only two friends instead of four just for my sanity.

Dear Izzy,

I hope you had fun. Sorry for the drama. I hope you see what I see and know you're beautiful. I love watching you be you. Brush off the negativity, stay strong, keep loving the way you do, and keep smiling. Here's to the next one!

Love, Mommy

Two Steps Forward Equals Three Steps Back in November

2011-12-13T21:47:00.000-08:00

November had major ups and major downs for Luke and all of us, but we made it.

The really good days were fantastic, heart warming, and hopeful. Luke was happy, engaging, and talkative. Some new things that Luke accomplished in November...

Tried new foods. Peanut butter sandwiches to be exact. He was obsessed for a whole day and requested it VERBALLY and with sign for breakfast, snack, lunch, snack again, and dinner.
Beginning to use his words more appropriately and consistently. Whenever he wanted something he would start with, "I want" and the object. Sometimes he didn't know the name of what he wanted so that was a little frustrating, especially with the peanut butter sandwich. He at first said, "I want," then grabbed my hand and took me to the kitchen to take me to the bread and peanut butter. I said, "I want peanut butter sandwich." and he delightfully repeated and repeated until he memorized he was eating a peanut butter sandwich. He also learned how to ask to watch TV. A simple sentence of "TV please."
He successfully completed physical therapy with his therapist Mary Beth. It is sad that he will not work with her any more, but it is a relief that he mastered the skills that were set forth. Stairs are no longer an issue, his stamina has increased, and he can kick a ball with control.
His receptive language is developing more and more each week. He now understands, consistently, simple commands when we request he put something in the trash, clean up, put an article of clothing on, when to go to the car, when to go to school, and when to go to bed. He still doesn't like crowds. Church has yet to work as well as going to the grocery store sans melt down.
He is getting into brushing his teeth. It has been a long and slow practice, but hit and miss, I don't have to hold him down to get the toothbrush in his mouth.

The really bad days were horrendous and almost unbearable but we did it. Now with Luke, he doesn't meltdown everyday like he use to, but when he does you have to watch out. They are bigger, louder, and more intense than he ever had prior to now.

He is testing us more, which in turn has us tell him no, he doesn't like it, a meltdown ensues. We are working on this and he is learning. I personally think he's at the terrible twos stage because of the way he looks at you as he does the bad thing. I think it's more typical kid than autism. So I guess there is a positive in there.
He is getting more aggressive toward Jaron. We think it could be just sibling rivalry, but when Luke doesn't get his way with Jaron, or doesn't like what Jaron is doing he rushes him.
He still doesn't like the store or church. We have tried several times to take him to either place but he always screams, always cries, and always melts down. I have been able to at least get him through the store and he screams as we are getting out of line, so that is progress. I'm looking forward to the day where the meltdown is nonexistent. We have also tried to take him to church on non mass days so he can get familiar with the place, be able to explore a little. I think if we keep it up he'll be able to walk in without a meltdown before we know it.
He doesn't like the doctor's office. The scale is his downfall. He just doesn't understand that he has to get on there and be still. I try and explain to the nurse that he has autism and doesn't understand, but they always insist that he needs to get on there. It's always a struggle, me getting flustered, the other two children trying to "help". It's a big mess by the time they get an estimate of his weight. He is aggravated and screaming, the other two are stressed and Mommy just wants to cry.
He still screams randomly and it is getting harder for us to decipher what he doesn't like. At least twice a week we're digging through the diaper bag pulling out everything we can think of to calm him when we're out and about. 99% of the time we never figure out what he doesn't like. We have to leave whatever we are doing or just skip what we were going to do because he's made it clear that he is not regulated for the change.
He is not a fan of his school schedule getting messed with. Thanksgiving break threw him off a bit. He was fine at home but had trouble readjusting to school. His teachers were concerned because he was silent the entire week back. He didn't have a meltdown but he didn't want to participate in anything or with anyone. He just wanted to be by himself. .

Dear Luke,
You still have us in constant amazement with all that you are accomplishing. We know there are a list of setbacks but Mommy and Daddy are working hard to help you figure things out. You are an amazing little guy and bring us more joy than you'll ever realize. We can't wait to watch you take more positive steps. We're in your corner always.
We love you with everything we have,
Mommy and Daddy

We Are In This Together

2011-11-29T09:03:00.000-08:00

Since we began the road of Luke and getting him help and diagnosis, Josh and my relationship has been, and continues to be tested. We're making it, but it isn't easy.

This video highlights almost all the struggles we have gone through since we have started. The card that hits the cord for both of us is the strain Autism puts on our marriage. The biggest obstacle we have faced is the change in our parenting. We both want what is best for all of our children but accepting the change has proved to be harder than expected. We are currently taking Parenting Home Training through the CDD at UNM to help us learn how to adjust ourselves and our family to Luke's needs. And while our therapist, Lauren, is fantastic, it is easy to say we will implement the things set forth but when it comes to actually doing it, it never goes as planned. Luke is always resistant, the other two are confused by the change, and Josh and I get frustrated at each other because it didn't work instantly.

Yes, we know things take time, but when you are in the middle of things the logic doesn't always come through till after the glare, the frustration, the meltdown from any (or all) of us.

One thing people have asked us, "What are you two doing for each other? How are you dealing with everything as a couple?"

In the beginning we would have had nothing to say. We are both guilty of focusing solely on the children and how they were adjusting, and forgetting about each other. Needless to say it proved to not be the right thing to do. We were at the point where we were together but not united.

Our solution to each other didn't come over night. It took us a couple of months to realize we were going at everything the wrong way with one another. The "Oh, wow, we are not on the same page" moment came for me when some one at church asked how we were and I just started crying. She hugged me tightly and whispered comforting words to me and Josh held my hand tightly. When we drove home that day, I was mortified that I started crying out of no where, but realized we were not okay. Josh and I opened the communication door and started talking about what we could do for us and the family as a whole to make things easier.

One solution to us, was the obvious, and something more than one person recommended... Take some GROWN UP time for the two of us, AWAY from the children. It sounds so simple but it really is hard to accomplish in the thick of things. But once we realized that it is just as important for us to have "us time" as it is for Luke to have his sessions, we have made it happen.

We have been able to attend some beautiful weddings together as a couple with no worries of children. Cameron and Linda's was beautiful and fun. I was sad at first to not have the kids because there were so many kids there for them to play with, but after a glass of wine and a dance with Josh I was excited to be in the moment with just him.

We were lucky enough to be able to travel to California for Andrew and Kelly's wedding and made a mini vacation out of it. It was hard for me to leave the kids behind for four days but by the second day, lots of phone calls, and my mom telling me to stop calling. I was able to relax and just enjoy the time with Josh.
The wedding was gorgeous and touching. The bride was beautiful and the groom was beaming. We had a great time at the reception dancing, eating, and dancing some more.

We met some friends, Helen and Adam, we had previously met for the first time in Florida during Josh's ITT commercial shoot and spent some time with them eating yummy food, seeing Universal Studios, and staying out till 2am, helping them celebrate a birthday in their family. Yes you heard right, we stayed out that late for the first time since college!

It was nice to get out and be together. The first few hours it was weird to not have to have a hand to hold or someone to guide, but once we got use to it, it was nice to be able to hold hands again and just be together.

Are we perfect? No, but what we've got going is working and when it stops we stop, talk, and reevaluate. We also try to remember that even though this day wasn't the best, we have tomorrow to try again. We made a promise and we intend to keep it.
We are in this TOGETHER.

My Humiliation at Wal-Mart

2011-11-22T10:46:00.001-08:00

Today as Luke and I walked out of Wal-Mart, he let out one of his infamous random ear piercing screams. Just as I was going to calm him and hold his head an older man pointed his finger in Luke's face sternly and yelled, "Hey! Don't!" I immediately stopped the cart turned and said, "You do not talk to my son that way!" His wife got him by the shoulder and said, "He was just playing." I turned to walk out trying to keep myself together as Luke started to cry and lose it.

I was humiliated, frustrated, mortified all at once. If he only knew what we go through every day he would know that the one scream, as loud as it was, was nothing to what we were handling six months ago. If he only knew that Luke just randomly screams because he gets overwhelmed, over stimulated, and hasn't learned to say, "I need out now!" If he only knew I'm not letting my son get away with everything, I really do know what I'm doing. If he only knew Luke has Autism and though he looks normal he is special needs.

As I sobbed the entire way home and my mom tried to comfort me, Luke, finally calm, sat in his seat and sang a Selena Gomez song called "Who says" without the music on. The one line he kept singing, "Who says you're not worth it, who says you're not perfect, who says you're not beautiful, who says?" As the tears started to calm, I listened to Luke sing and I thought, "Yes, yes you are perfect. Yes, you are beautiful. I say."

Now that I am calm and have been able to breathe, I have to say I'm still mortified. I can't believe I said something back! I'm usually really good at ignoring and able to keep moving but today I snapped, and I'm so sorry for it. Is it too early to have a glass of wine to calm my nerves? I suppose it is, it is only 11:30a. I guess I'll just hug Luke extra tight and give him a few more kisses.

Dear Luke,
I love you no matter what.
Mommy

October Update for Luke

2011-11-06T19:48:00.000-08:00

October was a good month for Luke. We have watched him blossom into quite the little boy. We still have our moments of meltdowns and spontaneous outbursts but they are no where near as frequent as they use to be. He is proving to us everyday that he has so much more to offer and we are in awe watching him tackle and overcome every obstacle.

One sweet thing Luke does now is "read" a book. Now this may not seem like such a huge thing to most, but it is for us. Before Luke wouldn't even look at a book. He would just launch it across the room or destroy the book and rip out the pages. With the help of lots of modeling at school, he has learned that books are for reading and now enjoys to sit down and "read" and point to the letters and pictures by himself. We are still working with him to let us read to him, but it's a huge step in the right direction.

Preschool has been a huge success. He has a fantastic teacher, Ms. Angela, that is going above and beyond for him. She is very patient, understanding, and strong. All qualities that are required when dealing with Luke. She is constantly bettering her education in Autism to benefit Luke. She is a Godsend and we are so blessed that Luke is lucky enough to have her as a teacher.

In Luke's class there are also two aides, Ms. Rosalinda and Ms. Andrea. Both these ladies are fantastic with Luke as well. Everyday I drop Luke off to school and he runs to any of his teachers, gives them a big hug, turns and says, "Bye Mom!" I am moved almost to tears. I can see he is in capable hands and he is comfortable, happy, and excited to be there.

He also has been going to therapy once a week at Explorabilities in Albuquerque. He has three fantastic therapist that see him over the course of three hours. He has Kendra for OT, Lynn for SLP (speech), and Mary Beth for PT. He could not have gotten better therapists. They are wonderful with him and he is more than willing to go in with them and work on all they have set out for him.

Lynn has had the most success with him. He is starting to speak in sentences. He now can request things by saying "I want...." It is a short sentence but it is working wonders. In the last two weeks he has started using it more consistently. His favorite request, "I want pumpkin." Which means the pumpkin that holds all of the Halloween candy. The first day he requested it I was confused and had him lead me to it. When I realized what it was I had to say no, and he wasn't happy, but it was 8:30 in the evening and it was bedtime. It has been hard to explain that just because you request doesn't mean you're gonna get it, but it's a work in progress.

We still have our off days but Luke is getting better at self regulation. One day I was cleaning around the house and "lost" him. I looked every where I could think of with no luck. Then I went into the kids bathroom, opened the bath door and found him in there with his blankets, towels, an old pillow, his letters and his Ipod. I guess he needed some alone time and didn't know how to get into his crib so he made do with what he had. I was so proud that he problem solved on his own. I wasn't ecstatic that he also got the dirty towels that were on the bathroom floor for his fort, or that he wanted to remain in there after I offered his crib, but the fact that he solved his own dilemma, outweighed everything else.

Dear Luke,

We are in awe of your progress. Every week you share with us something more and we are in amazement with your accomplishments. We're standing with you, and are excited to watch you grow some more. Keep up the good work Buddy!!

Hugs, Kisses, and Cheers,

Mommy & Daddy

A Day With Auntie Becca

2011-11-06T17:48:00.000-08:00

The second weekend of October we spent it with Auntie Becca. Our original plans were to go to the Sandias and go up the ski lift, but it was the one day it snowed in October so it was closed for the day. Our plan B was just as fun and I think it was a highlight for the kids.

The kids loved this spider web. The only downside was the older kids jumping on it and having some close calls with our little ones.

We had an okay time in the maze. I say okay because it was so muddy! Our shoes had at least an inch of mud on them and poor Jaron would lose his shoes if we stopped for too long. It was an adventure to go through it and made for some good memories.

After McCall's we headed home and Josh and I got ready for dinner with Great Grandma and Grandpa. Auntie Becca was nice enough to take on all three kids while we went out. The kids had a blast playing with everything and watching movies, and we had a lovely time eating at Vivace celebrating our birthdays, and drinking yummy wine.

Dear Auntie Becca,

Thank you for a fun filled day! The kids had a blast at McCall's and at your house. Jaron hasn't stopped talking about it!

We love and appreciate you,

Josh and Christina

Happy Birthday to Joshua!

2011-11-06T11:57:00.000-08:00

Josh's Birthday was October 1st. I'm a little behind on all we did!

We enjoyed his day hiking in the Tent Rocks Monument. We arrived at lunch time and had a picnic. Then we were on our way to conquer the 2.7 mile hike through the canyon, up the mountain and back.

It was a gorgeous day and really fun. The kids fared well. Jaron had a blast on his adventure and was a trooper hiking, climbing, and running the whole way. Izzy was a perfect hiker. She was careful, took care of her brothers and had a blast climbing and being independent. Luke was a champ! He hiked a little over a mile. We only put him in the carrier when we had a lot of climbing to do. He had a blast being free to run along with his siblings.

Dear Josh,

I hope you had a great day. We all had so much fun eating, laughing, hiking, giggling, driving, eating, laughing, & relaxing with you during your day. I think you have created a tradition.

Happy Birthday! We love you!

Mommy, Izzy, Bear & Lou

Our Beautiful Isabella

2011-09-23T06:10:00.000-07:00

This little girl is truly a blessing. Every day she proves to us just how compassionate, loving, caring, and responsible she is.

On Wednesday, October 28, she is going to receive a reward at school for Character Counts. This month the character is responsibility. Yesterday she came home beaming that she is going to receive the award. I read her agenda notebook and her teacher wrote to us to let us know of the award and ceremony. I asked her about it and she was grinning from ear to ear. The way she carried herself after school Wednesday and Thursday was with confidence and excitement.

When I wrote to her teacher, Ms. Page, about Izzy's excitement, she shared this story about Izzy to let us know part of the reason why she was selected for the award:

"I can't forget one incident in the beginning of the year where she got upset with another student and yelled at him and she immediately apologized and told me that she needs to control her temper and she walked away crying, calmed herself down, and apologized again to the boy. I was really impressed with her not blaming him and taking responsibility. I didn't even have to do anything to fix it - she fixed the situation all on her own! She really is a good kid! You guys are doing something right! :)"

Josh and I had tears in our eyes after we read that about her. When we sat down to talk to her about the incident and applaud her on taking responsibility, she started to cry. She said, "I'm sorry I yelled at him and I'm sorry for not telling you about it." We assured her she wasn't in trouble and that we were very proud of her. She dried her tears and hugged us both and continued on with her excitement about getting the award.

Dear Isabella,

We are so blessed to have you as our daughter! You are blossoming into a beautiful girl inside and out! Like your favorite song says, "You're Unstoppable!" We love you. Keep up your goodness. We couldn't have asked for a more loving, precious, inspiring, beautiful girl.

Hug, Kisses, & Giggles,

Mommy & Daddy

Keeping Up Tradition

2011-09-19T05:49:00.000-07:00

For as long as Josh and I have been together we have had a tradition of every summer hiking in the Jemez Mountains and going to the hidden falls. We normally would go on the Fourth of July but the past few years some obstacle has kept us away, from our schedules, to the fires. We have always made it within the summer, and this year we made it with just days to spare.

It was a lovely hike and we finished it off with dinner at Los Ojos with Great Grandma & Grandpa. Perfect Saturday.

Dear Izzy, Bear, & Lou,

We had the best time with you. We could get use to hiking every weekend and hearing your sweet giggles, shouts, & excitement. We love that we're creating such good memories with you all. We can't wait to make more.

We love you all, with all that we have,

Mommy & Daddy

The Mini Huge Successes of Luke

2011-09-15T18:18:00.000-07:00

Luke has made leaps since school has started. Here are some new things he has started doing since he started school.

Saying "Daddy" and actually applying it to Josh. He said "Mommy" in July, but stopped and has started again when school started. Josh and I are in heaven!
Holding our hand and staying with us instead of bolting. We have been able to take two hiking trips and let him run and participate with his siblings.
Staying close to us when we go out to the park or are in a big open space. He use to bolt all over the place and Josh or I had to stay close to him. I met with Dr. Goldsmith from UNM on Tuesday and talked to her in the plaza of the CDD, Luke entertained himself and ran around the table while we talked. Two months ago he would have run away.
Using sign language appropriately. Especially when he needs more of something.
Following two step commands. He now throws his diaper away and puts his dirty clothes in the hamper. We say, "trash please!" or "dirty clothes, please." and he runs to do his task. When he is done, we all, Izzy and Bear included, cheer and give high fives to him for completing his task.
Using affection appropriately. He loves giving & receiving kisses now. He says, "Give me kiss." or points to his puckered lips when he wants affection.
Does not unbuckle his seat belt. Two weeks in a row he and I have driven into ABQ and he has kept his seat belt buckled and in the strap.
Gestures for pressure or says "Hug" when he needs help to be regulated.
He feels pain. Although his pain tolerance is still high, hit and miss, he recognizes the pain when he bumps himself.
And the newest.. ENGAGED IN PLAY with someone other than his siblings!! It was brief but he understood the game of chase and had a great time participating.

All of these new things are still not consistent but it is a glimmer of what he is learning & retaining. My heart is at peace and the weight is slowly lifting off of my shoulders. Our little boy is proving that he is so much more than the diagnosis.

Dear Luke,

We are so proud of you and all that you have accomplished thus far. Mommy and Daddy are ecstatic about your newest step. Daddy and I were in tears as I bragged to Daddy of your greatness. Daddy said, "In Luke's words, Stupendous! Awesome!" Mommy agrees. We're beaming! We're so blessed to have you.

Always in your corner with cheers, love, hugs, and kisses,

Mommy & Daddy

My Grief

2011-09-10T08:06:00.000-07:00

Today I received the official medical report on Luke confirming his Autism. I have been checking the mail every day as soon as the mailman passes by, anticipating this report (ECEP - Early Childhood Evaluation Program). Mostly because it is a huge key in more services for Luke. I didn't know it had such emotion attached to it as well.

As I sat down on the stairs out front, ripping the envelope as fast as I could, I was thinking, "Thank you Lord, for this. More doors will open for Luke, he's gonna get specified care now, he is going to improve more with this." I was happy, relieved, at peace with the week we have had. (It hasn't been horrible but it hasn't been the best. Days off of school are going to be a hard transition and something we're going to need help with.)

I was reading through all the legal jargon and thinking, "Okay, seems standard. Blah, blah, blah." As I kept going I got to the part where they started talking about Luke. The first time I read, "Luke is significantly delayed in" I started to cry. Then I thought, "You're ridiculous Christina, you know this already." I got myself together and read on.

After I was done with all 20 or so pages, I picked up the phone to call one of the Dr.'s that was in on the evaluation because I had questions about some of the suggestions. As I left the message I started to lose the coolness of my tone and I felt tears coming. I had to cut the message short because I couldn't hold it together. I sat on the front steps sobbing and then felt stupid for sobbing over something I have known about for months.

I remember sitting in at the school's evaluation report and the psychologist there saying, "Luke has been found to be autistic." Josh and I both nodded our heads and said, "Okay." and then they said, "Are you guys okay? You seem so calm. Do you need anything?" I replied, "We knew he was, so it's not a surprise. We are prepared for this." And then in July when the Dr. from the ECEP team said, "Luke has been found to have autistic disorder." Again Josh and I nodded. Then we were asked, "Are you guys okay? This isn't the reaction we were expecting." Again, I replied, "We already know he is. We just want to know how to help him. What else can we do?"

Looking back I realize they were expecting some bit of emotion from one of us, well let's be honest, me. I think I was just so focused on getting him help, it really wasn't sinking in all the way. No, I wasn't in denial, I accepted the diagnosis from the beginning and hit the ground running trying to research and get Luke help. And no, I'm not sad that my son is autistic, I accept him fully, and am his biggest cheerleader & advocate. I think I'm just really good at stifling emotion when it comes to someone I love. I feel like I need to stay strong and I can cry later.

Well my later was today. I guess you can call the tears, tears of relief. We have all the pieces now to get Luke help. We have the "proof" for the doubters, the official word on what care he needs, the official word on exactly what makes him autistic. It's officially official, our son is autistic.

Dear Me,

It's okay to cry, people don't judge as harshly as you think. Just because you cry doesn't mean you are less of a mother, a wife, a person. There really isn't a rule that says otherwise. Luke loves you, never forget that. He is going to be alright. His future is very bright, especially with you and Josh on his side. Keep your chin up and look at what you have been given. You are blessed.
Love,
Me

Our Random Unplanned Weekend (Sunday)

2011-09-05T20:26:00.000-07:00

Sunday started out with the idea of going to Santo Domingo Pueblo to attend their arts & crafts fair. Once again Josh and I were dragging our feet on the matter and couldn't make a firm decision. Jaron asked, "Mommy what adventure are we getting in the car for today?" Both Josh and I told him we didn't know.

Finally I decided we weren't going. I started cleaning and the house wasn't clean enough to leave. So everyone got their assigned jobs and a cleaning we all were. We finally finished cleaning about noon and I asked Josh what he wanted to do next. He said the pueblo so off we went.

The kids really enjoyed watching the dancers. I've always admired the girls and the beautiful garb they wear. They are so gorgeous in their dresses and all the beautiful silver & turquoise.

Jaron and Izzy sat at my feet as we watched them perform. Luke decided he didn't want to walk today and opted for the backpack with Daddy. He really wanted to watch the performance and listen to the music, but the crowd got to be a little bit too much for him and he gestured to Daddy, (Yes! HE gestured,) that he needed to leave the area. So Josh walked with him and stayed close so he could at least hear.

Our goal for going there was to enjoy the cuisine. Josh and I had delicious fry bread tacos and the kids enjoyed fry bread with sugar on it. Luke loved it. He had a whole one to himself! Izzy & Bear were also able to enjoy some ice cream while I looked around and shopped. I found a gorgeous nativity scene made by a Jemez Pueblo artist & two gorgeous horse hair pottery ornaments from an artist in Acoma Pueblo. Finds I wasn't expecting to purchase, but they were too beautiful to pass up.

After we ate all we could eat and spent all we could spend we decided it was time to leave. As we were leaving we saw a sign for the Tent Rocks Monument and thought, "What the heck? Let's go check it out!" We arrived there at 5 in the evening and the gentlemen at the gate gave us suggested trails and told us we needed to be out of the park by seven.

As I looked at the brochure he gave us I told Josh, "This is bigger than expected! We are not prepared for this at all. I thought we were just going to be looking at some neat shaped rocks!" We were all in flip flops, shorts & had one bottle of water and a jug of juice to drink. We decided to drive in and hike a little and see some of it since we already paid the $5 entrance fee & the kids were already expecting to be able to get out of the car.

I'm glad we decided to go. It was so much fun and gorgeous.

We are definitely going to have to go back and see more of this park.

The trail we decided on was to this cave. About a half mile walk. It was such a spectacular walk and the weather was just perfect. Not too hot with a perfect crisp breeze in the air.

We decided to head back to the car at a good time. As we were running with the kids, we looked back and saw a huge rain cloud coming over the mountain. It was a gorgeous sight.

The kids and Josh, ran their little hearts out. It was such a joy to watch them giggle and have so much fun.

Isn't she stunning? The scenery only highlights her beauty.

Proof of his progress. Direct eye contact!

My handsome boys. Jaron insisted on a picture with all three of them.

My handsome boy. He was such a leader with his brother. Helping him in any way he could along the trail, and making sure he was included in all he & Izzy were doing.

Proof this guy had a good day. After bath, he climbed up in the chair and said, "I'm not tired Mom. I'm gonna sit here for awhile." I glanced at him not ten minutes later and he was sleeping soundly.

Dear Izzy, Bear, & Lou,

Mommy & Daddy had the best time with you all. We enjoyed watching you run, smile, & giggle. We hope you had as much fun as we did and you remember all this day. We know we will.

We love you all with all that we have,

Mommy & Daddy

Our Random Unplanned Weekend (Saturday)

2011-09-05T08:10:00.000-07:00

All week we talked about going to Chaco Canyon again, and finishing the ruins since the first time we didn't get to complete it, but Josh and I never made a firm decision. So Saturday came and we were still dragging our feet about our departure & neither one of us would give a firm let's go or not. The kids made our decision final when Jaron said, "Come on Mom, let's go on an adventure." So we threw ourselves together, packed lunch, and on the road we went.

We started where we left off at Pueblo Bonito. All three kids were very excited to be on our way and see the ruins. All three were perfect with all of the walking. Especially Luke! We decided to let him walk since he has done so well with walking in line at school. He was an excellent little boy.

Pueblo Bonito was spectacular. I highly recommend Chaco to anyone that loves history, hiking, & culture. Izzy was our tour guide reading the guide booklet at every number post they had to denote a significant fact about the pueblo. She impressed us tremendously with her ability to read and comprehend what she was saying.

Needless to say all three had a blast hiking the ruins.

Their favorite part was stopping and posing. Well, Izzy & Bear. Lou was just happy to be free of his stroller & the backpack. Josh & I are quite impressed with how well he did. He was a little trooper walking and trying to participate with his siblings. It brings tears to our eyes to see how far he's come in two weeks of preschool.

It really is such a gorgeous sight. It's like stepping back in time as you go through the ruins, trying to imagine it in it's hey day. Can you imagine the community the Chacoans had? It is so marvelous when you stop and think about it.

After we spent all the kids could endure at the sight, we still didn't finish, we headed to Jemez Springs to meet Josh's grandparents for dinner. The kids were filled with excitement upon learning we were headed to the mountains.

We had a fabulous time. We had great conversation with Grandma & Grandpa about the Jolly roots & where they came from prior to America. It is a fascinating story & so interesting to hear that Grandpa is part French & Grandma is Russian. I would have never have guessed.

Dear Izzy, Bear, & Lou,

We had the best time with you all. We're so proud of your love for the outdoors & history. We can't wait to go on more adventures with you & discover more beautiful places.

We love you with all that we have,

Mommy & Daddy

One Step Back

2011-09-01T10:18:00.000-07:00

Today Luke took a step back. My heart is heavy and I'm confused. I'm racking my brain trying to figure out the change that could have happened to cause the set back. I've been watching him slowly unravel since Sunday. I tried to "fix" it by giving him more pressure, more hugs, more of all I have been giving him. It was all a quick fix as he still lost it in the end. Meltdowns are back.

He got me good today. He didn't want to lay down for nap and he made it clear. I got his milk and walked him to his crib but as I started to get him he started thrashing. He's too fast. I'm not strong enough. His head met my nose faster than I could process all that was going on and I started to bleed. I could see the pain in his eyes, the guilt. He didn't understand what he did. He kissed me on the cheek & I picked him up & put him in his crib. He said, "Good night. I love you." and I gave him a kiss and walked out to the bathroom to tend to my nose.

I cried a little. Not because of the actual pain from the hit but the emotional hurt & the guilt. I knew he was unraveling. I saw it Sunday and it continued to Monday & Tuesday. His teacher talked of some set backs but he kept it together for the most part and was successful in all of his therapy sessions.

I knew today he needed to just be. No errands, no heavy interactions, just let him run around the house, the yard, jump in the trampoline, give him a Luke day, and let him know I'm here when he needed me to help or play when he was ready.

Needless to say he hardly interacted with me. He wanted me near but not involved. He followed me around the house as I cleaned and used his gestures to request his alphabet magnets to play on the fridge while I cut and cored tomatoes in the kitchen. When I needed to run outside to get something from the other fridge he anxiously awaited for me at the back door till I returned and greeted me with cheers when I came back in. When I went down to give him a hug he pushed me away and ran but when I got busy again making the older two beds he came in the room and played with the toys. Never acknowledging me or showing a bit of interest of what I was doing.

This has to be one of the hardest parts of having an autistic child. I know, because I'm his mother, that he is struggling. He knows that I know, and it frustrates him that I can't figure out his gestures, his scream, his distance.

He has done his best to keep it together. Six months ago he wouldn't have lasted an hour. He lasted 3 days. So even though there was a set back there is progress. I see that, it's just hard

Dear Luke,
We're all waiting for you to come back. We're here when you're ready.
We love you,
Mommy & Daddy

(I wrote this last night because I was upset and confused and this was my outlet. I'm happy to report that so far this morning he has been fantastic. He had a great day at school, was excited to come home, and has gestured and used some words to get what he needed or wanted. I'm a happy Mama again.)

Pre-K For Our Bear

2011-08-29T10:41:00.000-07:00

Last Monday, Bear started Pre-K. He was so excited. He awoke extra early, got himself dressed right away, ate breakfast, & waited, since it was only 7am by the time he was done and school doesn't start till 8:45! He had a great first week. Every day after school he would come home and say, "Mommy, I'm not hungry for lunch, can I lay down in your bed and rest?"

He's so sweet. This was the scene every day about 12:15pm. School just tuckers him out.

One thing at school that he was not looking forward to was the fire drill. Last year in preschool he didn't have a great experience with it and was scarred from the experience. His teacher told the class on Thursday there would be a practice drill on Friday and Jaron fell apart with worry in class that day. His teacher talked to me and asked if I would talk with him and try to calm his nerves.

That night, Jaron, Daddy, and I went over a story board we had about fire drills. (Thank you CDD for providing it.) We talked with Jaron and explained to him that it was just practice and it was to keep him and others safe. He said he understood and off he went.

The next day, on the way to school we talked about it some more and he was talking of how confident he was. Well that all changed when we walked into class. He fell apart. And not the I'm scared Mommy don't leave me kind. The big ugly cry of terror. I was heartbroken and confused. What? He was just fine, and good about everything. As I hugged him and tried to reassure him one of the teachers took him from me and said for me to go and they would handle it. Well I didn't leave exactly. I waited in my car for 15 minutes and went back in to check on him. To my surprise he was fine and playing. I left and felt sorry for them when they pulled the alarm.

When I arrived to pick him up I was expecting to hear how he fell apart, how they had to carry him out, etc. To my surprise Ms. Miada said, "You're not going to believe it! Jaron did fantastic with the fire drill." At this point my jaw was dropped and I said, "Really? My son?" She said, "Yes, he followed direction, he didn't cry, he was a leader. He helped others to the line, he made sure others were calm & out the door." I was in such shock and disbelief I was crying. I was so proud that he stepped up. What a kid!

Dear Bear,

We love that you love school so much and are excited and eager to go. We are so proud of you! Who knew you were such a leader? Keep up the good work. We look forward to more good surprises of your success.

We love you to pieces,

Mommy & Daddy

Preschool Is A Go For Mr. Luke

2011-08-22T21:11:00.000-07:00

Mr. Luke started Special Education Pre-Kindergarten on Thursday. He handled the day better than expected and so far has done beautifully with all the changes that have come about.

He did a beautiful job of making a liar out of me. I told his teachers at the meeting we had with them the day before, Luke doesn't like to climb stairs. He loves the slide but he won't do it on his own.

Well, first thing he did on his first day of school was go to the slide, walk up the stairs, and slide himself down! I guess that was his way of telling me that he is okay to be left without me.

His first day of school also included his first encounter with a fire drill. Josh and I stayed at school that day, away from him but near so we could help if he had a meltdown. The staff at the pre-k had a great plan for him and all of the kids and he did really well. Josh and I ended up just hanging out, rather than helping with anything. But at least I got to see how great he's going to do in school.

He has completed three days of school so far and he has been successful with every one. Transition from one activity to the next is a challenge for him & circle time is something that is going to need a lot of work. But he's making it. The biggest success out of all of it, is he is speaking more. Still not carrying on a conversation, or fully understanding what he is being told, but he is able to say good bye, and hello all appropriately. Baby steps, I know.

I have a brighter outlook on Luke and school. I was lonely today. It's only a full hour and a half without kids but today was the longest hour and a half ever! I was happy and eager for 10:30a to roll around and see Luke come out the door with his teachers. Luke was happy to see me but was confused that his brother wasn't there.(Jaron started school today and was home Thursday and Friday when Luke started.) He and I had an hour till we had to get Jaron from his school so we hung out at home on the trampoline so he could jump out his frustration & confusion of no Jaron. When we went to get Jaron he was very good at walking into Jaron's school & very excited to see his big brother and take him home.

Dear Luke,

We are so proud of you. We hope you continue to make a liar out of us and succeed in all we say you can't or won't do! We look forward to watching you continue to blossom! We can't wait to see or hear what you'll do or say next! You are a constant good surprise!

We love you to pieces,

Mommy & Daddy

Look Who's in Second Grade!

2011-08-15T12:25:00.000-07:00

I can't believe Izzy is in second grade! She was so excited this morning for the first day of school. She was up and ready to go all by 6:30! This girl is serious about getting to class on time.

When she and I arrived at her school, the parking situation was horrendous! I had to circle a couple of times for a spot. Izzy was quite excited when I found a spot and she could get out and get to her new class. She and I walked hand in hand through the school and to her classroom, and I thought, "Wow, I'm so glad she loves me enough to still hold my hand. Cherish this moment, Christina!" We got to her class and we unpacked her things, I said hello to her teacher and she turns to me and says, "Okay, bye Mom!" Taken aback a bit I said, "Oh, you don't want me to stay with you a little longer? I left the boys with Nana so I could spend time with you." She replies, "No." So I begin to walk out with her to take her to the playground doors.

After we got half way down the hall, I realized I didn't take a picture of her in front of her class. She kindly smiled at me when I asked if I could get one of her and walked back with me to take it. After that I got a quick kiss and off she went to play with her friends.

So I will cherish that moment of hand holding. At least she's not too cool for that. Well at least she wasn't today. Who knows what tomorrow will hold!

Dear Izzy,

I'm so proud of your independence. I love that you love school. I wish you well this year. Here's to standing up to bullies, smiling at everyone, & studying up a storm.

I love you to pieces,

Mommy

Happy Birthday Luke John Michael You are 3!!!

2011-08-09T22:38:00.000-07:00

Luke had two great birthday celebrations this year. This year is extra special to us with all that has happened so he deserved every bit of it.

On his actual birthday, we had a small cook out with Mimi, Baa baa, Great Grandma & Grandpa Jolly, & cousin Bryan Jolly from San Francisco. It was a lovely evening and Luke had fun running around, eating ice cream with berries, and opening gifts.

Best gift of the day, bubbles, from Mimi & Baa baa. This kid LOVES his bubbles.

This past Sunday we celebrated his birthday on a larger scale, with close family and friends. Luke had a blast running around, eating sweets, and opening his goodies.

He did not enjoy being sung happy birthday to or blowing out the candle, so maybe next year we'll skip that part. He didn't enjoy having to move on to the next gift until I remembered a technique his OT showed us. I just said, "Ready? 1, 2, 3, switch!" and took the gift away and handed him another one to open. He adjusted well and was happy to see what the next gift held.

His favorite of all his goodies, the cards. He got a cute one with a 3 on it from Judy, Chris and Bill, that he carries around and says, "Three!" as loud as he can. He also got a Mickey Mouse one from Tom & Barb that he carries around saying, "Mickey Mouse!" pretends to read it, slams it shut and says, "The end!" His next favorite one was from Anna & Nick with Diego from Nickelodeon. He says, "Go go Diego, on Nick!"

So all day since Sunday, he has carried these three cards around babbling, taking them to his favorite corner and "reads" each one saying the lines above. He's too cute!

Dear Luke,

Happy, happy birthday! We are so glad we were blessed with you! You are a special light, & you bring us more joy than you will ever know. We look forward to watching you grow, blossom, and flourish! Here's to a great year of 3!

We love you so much,

Mommy & Daddy

ECEP Update for Luke

2011-07-31T21:08:00.000-07:00

On Wednesday July 20th, Luke had an appointment at the UNM Center for Development and Disability Center. It was for an evaluation they call the ECEP, which stands for Early Childhood Evaluation Program. Through this program they evaluated Luke to determine if he was medically autistic or not, and if he was found autistic what "severity" he had. It's a four hour evaluation that is lengthy but worth it.

Luke was himself. He participated in a lot of the activities that were presented which made us surprised, pleased and excited about his accomplishments. The ECEP team was fantastic and took care of him as well as Josh and me. They did a lot of play based activities with him, for about an hour, to see how he would react to certain situations. He did some and ignored some which is typical of Luke so we were happy. While they engaged with Luke, Josh and I were asked a series of questions on Luke's development from when we found out we were pregnant to now.

It's incredible how much has happened from then to now. We've answered these questions so many times since January I almost want to type it out and just hand it over to the person when we walk in! The biggest question that we had, is if we felt Luke lost speech. Originally I said no because I couldn't remember him talking. He always sang but talking, conversations, I never recalled. My memory changed when I watched home videos with the kids the other day and watched one where Luke was 17 months and talking! Somewhere in between then and now he lost speech. (And yes, I feel like a failure for not noticing, but that's an entirely other blog!) So that was the only new information we could provide, everything else we had was just normal, perfect everything. Perfect pregnancy, perfect birth, perfect perfect perfect until he hit 18 months.

After we answered questions for two hours or so and Luke played/got evaluated we had an hour break. Luke slept during the break. He was so sweet, so peaceful. After the break we had a meeting with all the professionals so they could give us their diagnosis on Luke and why they found him to be whatever they found.

It was no surprise to us to hear Luke has Autistic Disorder. My thought in my head was, "Duh! Now what else do you have for us to help our son?" What surprised me is when they started to explain what exactly the definition was and how it applied to Luke. Basically the short hand version is there are three sections for autism right now, they are working to change this, but it won't change for Luke. PDD/NOS which stands for Pervasive Developmental Disorder/Not Otherwise Specified, Autistic Disorder, and Asperger's Syndrome. From what I understood, Autistic Disorder is the more severe of the three. Asperger's is what some call "high functioning", although most professionals don't like this label because Asperger children have a whole other set of problems as well.

Luke fell into the Autistic Disorder category because he has not developed speech yet, he has social impairment, and he has an unusual fixation with objects such as letters, numbers, balls, etc. He is obsessed in a way, more than a typically developing child. He will always be autistic and never move into the Asperger's category. He can fall into the PDD/NOS category but it's highly unlikely.

So much information, so much to take in, but we're good with everything. Luke is still a happy little guy, his siblings are his biggest cheerleaders, and Josh and I are standing strong. We pray for more doors to open for him and for him to be more comfortable with himself in different environments.

Dear Luke,
We love you. We're proud of you. You have come so far in the last 7 months. We look forward to watching you grow and blossom. You are such a blessing.
Love,
Mommy and Daddy

June Report for Lou

2011-07-18T12:05:00.000-07:00

June was a trying month. We took a lot of steps back. A LOT! But Josh and I kept our chins up and tried our hardest to patiently wait for Luke to come back to us.

He has done better. There were a lot of happy moments. Moments where he was just happy. He wasn't in his own world, he was actually with us. Those days were such a blessing. It was so joyous to have him with us, participating, giggling, smiling, eye contact, affection. Everything we've worked so hard to get.

One huge milestone he made was he actually played with a car correctly. He didn't spin the wheels, he didn't launch it across the room, he played with it!

And probably the best milestone of the month.... He ATE with a SPOON!!!!!!!!!! Now it was pudding that his sister made for us, so it was extra yummy, but the fact that he chose the spoon over just licking like he normally does is HUGE!

Although he still is not consistent with the use of utensils we know he's trying. We're learning that with every step forward and three steps back isn't because he's given up. It's because he's frustrated that he can't do it all. We're keeping our chin ups and holding on to hope.

We do ask for your prayers for Lou as this Wednesday, July 20, we have what we hope is, his last evaluation for autism. This one is called an ECEP. It's to get his medical diagnosis of autism. I'm not going to lie, I'm worried, stressed, fearful, you name it. I know all that's going to happen is they are going to say yes he is autistic, here's his medical stamp, but I can't help it. What if they find more wrong? What if, what if, what if. Blah! I try not to think about the what ifs but I can't shut my brain off.

Pray for our Luke. Pray he doesn't have a meltdown, he's strong, and can withstand the four hours of our time there. Thank you in advance.

Dear Luke,

We're standing with you. You make us so proud. We look forward to discovering more about autism and helping you achieve your goals.

We love you,

Mommy & Daddy

Father's Day

2011-07-08T13:35:00.000-07:00

Josh had a pretty good day. He woke up to Belgian waffles, eggs and bacon for breakfast. The kids made him cards and artwork. Izzy was so sweet and wrote him a book about Father's day. After everyone was done with their breakfast, Izzy and Bear asked Daddy to jump with them on the trampoline with the sprinkler was on. They all had a blast.

Dear Josh,

Hope you had a good day. Thank you for being an amazing father. I love you with all that I have.

Christina