Life As We Know It with Autism and Apraxia

Wednesday, June 8, 2016

Let's Play Catch Up

Hi! It has been a while since I have blogged about these kiddos! We are fully in "summer vacation" mode and enjoying our time off of school.

Landon finished kindergarten and will be starting summer school next week. He made many gains and achieved a few IEP Goals this year. He will again be in Project Class next year but unfortunately he will have to attend another school in our district. I really did not want this to happen and felt that Landon should be given a chance to attend his home school in our district and try more time in a general education classroom. The team felt that Landon still needed much support and that Project Class was the correct placement for him in 1st grade. I only want what is best for my kids and as much as I wanted him to be included and learn how to adapt in a general ed room I also had to realize that maybe he is just not there yet. The school had expressed they really wanted Landon to interact with as many peers as he could this summer so we have him trying out Soccer this summer. I will have to post a video of his next game so our followers can get an idea of how our buddy plays soccer.
Landon as usual has his weekly therapy sessions: ABA, Feeding, and OT. We are grateful for his amazing therapist and all of the hard work they do with him. He is starting to answer "wh" questions with ease and understanding and of course he is trying new foods!!! We have added apples, waffles, turkey lunchmeat, and pears to his diet. This wonderful accomplishment comes with the help of Ms. Jessica and Suzi. We are currently working on cereal with milk, yogurt, and hamburger meat.

Then we have Miss. Quinn...I am not even sure where to start with our little firecracker. Quinn has come a LONG way in her talking. To say it in a nice way...she doesn't stop talking now! She is learning to speak and ask questions in complete sentences. She is learning to voice her opinion and tell us what she wants exactly. She has her struggles with asking and answering questions but we have been working on this skill daily. Quinn's apraxia has halted her in fine motor development and motor planning. She struggles to write and correctly hold a pencil, crayon, or marker. Her OT has been strictly working on the letters in her name and making sure she knows the correct formation. Apraxia is such an interesting diagnosis and I am actually still learning all the aspects of it. People will say to us "So Quinn is all set now, she can talk!" "She no longer has Apraxia!?"
My answer is "YES!" We are so excited she can talk but she still has some motor planning and processing concerns that we are working on. She LOVES school, dance, and telling everyone her name is "Quinn Renee!" This summer she is also playing soccer and will be our little ballerina in her upcoming dance recital. Quinn did not qualify for Summer School so I signed her up for a few Y classes so she can practice her socialization skills.

The kids and I go to the library weekly now to pick out books to read together before bedtime. Landon is really starting to read fluently and Quinn LOVES to use her imagination to read books to me. As an educator and mom this is my favorite part of the day with my babies. I love to hear them read to me!

Friday, February 26, 2016

Disney Princess Half Marathon Weekend 2016

Speaking at the TeamUp Dinner! So nervous but what an honor!

Glass Slipper Challenge 19.3 Complete!

Windy City Princesses Ready to Run!

I am a sucker for running and races as my mom would say I am addicted. I had the pleasure of running my 5th TeamUp charity run this weekend and before we even ran we signed up for the next big race! I am forever grateful for my family and their support, and for my best friends who run these crazy races with me. RunDisney puts on the best race day ever and if I had the money I would sign up for ALL of their races. Regardless of the 3:00 am wake up time and running in the dark. Every mile is magical and special and I already have a countdown till 2017!

I am one proud Autism Mama and will run until I can no longer run to raise awareness. As my kids like to tell me "Mama, your a running rock star!" I run for my kids and all of the others on the spectrum. I run to relieve stress and stay in shape but most of all I run to prove to myself I can do the impossible!

Windy City Princesses have a full running awareness schedule for 2016! Feel free to keep an eye our for us. We have big goals to achieve, awareness to raise, and dreams to conquer!

Wednesday, April 8, 2015

Easter Weekend

Landon Joseph

Quinn Renee

"PupCake"

Pete-The-Cat

The Easter Bunny Has Arrived!

To Cute In Her Bunny Sunglasses!

Reading Her New Frozen Books

Love It!

Serious Coloring Going On!

Handsome Man!

Chicago Cut French Fries!!!!

Yummy!!

Beautiful Easter Day!

LOVE!

Family Picture....Seems About Right!

Feeding Therapy Evaluation

Road Trip!! A VERY LONG ONE!

BORED...Is this Evaluation Over Yet!?

Last week Ben, Landon, and I headed down to Evansville, IN for Landon's Feeding Evaluation. Landon did really well in the car despite the 5 1/2 hour drive down there. We stopped for potty breaks and to stretch are legs for a bit. When we arrived we had the pleasure of staying at the Ronald McDonald House on the hospital campus. What a LOVELY house!! Landon had a blast!! They had a swing set out back plus a playroom and a game room!! He enjoyed the little time we had there very much!! We headed over to the clinic in the morning to meet the Feeding Team and to discuss the plan of action. When we were introduced to this Feeding Team I was under the impression that Landon would qualify for Intense In-Patient Feeding therapy that would be anywhere from 4-12 weeks. After the 2 1/2 evaluation the team had informed us that this process would take over a year of our time and commitment. We would have to be there at first 4-8 weeks and then come back on all of our school breaks through next summer. UGH...that is such a HUGE commitment! Plus they couldn't promise us that we could start this summer.

They did feel that Landon's diet was not necessarily terrible and what he was eating was hitting his nutritional value. He is slowly gaining weight but they did not see a major problem. The team did talk to us about some strategies to start with Landon as soon as we got home and they even gave us their full plan of attack!

Ben and I talked about our options on the way home and felt that we could really work with him at home (now that we had strategies) and that we start to look for feeding therapy at home now since we have an official diagnosis and write-up. A HUGE weight was lifted off of all of our shoulders seeing that we would not have to be separated as a family the whole summer. I immediately came home, went on to the Autism Speaks Resource Guide and found a few feeding therapist in the area. Made my first phone call Thursday morning and made Landon an appointment for the next day at a new location.

I scored the jackpot on this new therapy for sure! They have an amazing sensory gym that Landon fell in love with and was thrilled to work with our new feeding therapist because he earned time in the gym after sitting and eating (his choice foods) for 15 minutes. We immediately signed on and scheduled his weekly appointments. I am sure this will take some time but I am optimistic that our new feeding therapist will work great with Landon!!

March Madness...IEP Style

March was a busy month of evaluations and meetings! I felt bad for taking so many days off of work but my kids come first! We started off the month with Quinn's Pre-School evaluation and wow was that exhausting!! Quinn had a two hour evaluation done by the team at our Early Childhood Center. They were testing her in all areas and a plethora of teachers and therapist came in and out of the room to assess and observe Quinn. I mad the sad mistake of taking Quinn by myself to this evaluation. I should have had reinforcement because I was not mentally prepared. All-in-all the evaluation was not terrible but I felt like they were only getting a "snap-shot" of Quinn and they were making some pretty hefty assumptions about her. By the end of the two hours I walked out very upset and frustrated with the evaluation. They did not see any motor planning concerns (verbal apraxia) but they felt she was showing quite a few characteristics of Spectrum.
After that I needed to vent and re-group, I also needed to make some phone calls and prepare for her IEP meeting with reinforcement. I immediately called the psychologist over at Little Friends (who by the way has assessed Quinn twice! Once at 18 months and again at 2 1/2) to discuss what our next steps should be. I also made sure that Quinn's EI Speech and DT Therapist would be available to be at her IEP meeting. Once I talked to everyone we were all on the same page about Quinn and were ready to take on the IEP Meeting!!
Luckily I was able to plan Landon's Kindergarten transition meeting on the same day as Quinn's IEP Meeting. Needless to say that was a long day of meetings and mentally exhausting.
I also attended two of the classrooms that Landon was recommended for next year. One classroom is a self-contained Autistic Room and a full day program while the other option was a attending General Ed Kindergarten for only 2 1/2 hours a day and being pulled out for academics in a small group setting. Even though the team had already made their decision it was up to Ben and I to decide where Landon would go. The all-day program was at a farther away Elementary School in hopes that he would eventually return to our "home" Elementary School for 1st or 2nd grade. As much as I want Landon to learn and be in a general education classroom Ben and I felt that his needs and services would be better met at the all-day program. He will have the opportunity to be in a Kindergarten classroom during the day as well as attend P.E. with his kindergarten classmates. This was not an easy decision but I sure hope we made the right one!
Quinn's meeting was the longest two hours of my life!! THANK GOD we had our EI Therapist there because the team decided well before we walked in that they wanted to check the boxes for Autism Spectrum Disorder on her IEP. NOW please let me make this perfectly clear we would have been TOTALLY FINE if Quinn was placed on the spectrum BUT after careful review with the psychologist at Little Friends Quinn does not have the necessary traits to qualify for Spectrum. I am upset because the Team was making assumptions after just a short observation. It scares me to think that this Team could be placing children on the Spectrum that do not need to be placed there. After we all talked and discussed Quinn qualified for school 5 days a week for 2 1/2 hours with an IEP of developmental delay. We are excited that she will attend school and really do hope that they can work with her and continue her achievements!
So as of 04/20 we will have 2 kiddos getting on the bus together for school! Picture overload for sure on that day!! Quinn will be excited to ride the bus with Landon, though I cannot say the same for Landon!

Friday, February 6, 2015

Taking A Look Back 2014....Landon Joseph

And now its Landon's turn!

Our little man has been VERY busy! School, Hockey, Therapies, and of course Hawks Games! I am not even sure where to begin. I am thinking lets start with all the FUN he has had!

Ben build Landon is very own ice rink in the back yard and I have to say it is awesome! Landon has finally been able to skate on it a few times and he sure does love too!! I also took his 5 year old birthday pictures on the rink and I was pleased at how nice those came out! Landon is still taking hockey lessons at the local ice arena and really is enjoying the new class setting. We are looking to get into the Blackhawks Special Needs Ice Program next year. I have heard great things about it from a fellow autism parent. A few things Landon really enjoyed this year was the Hawks Christmas Party and Christmas! He was excited to meet a few of his favorite Blackhawks: Brent Seabrook and Marian Hossa! He also talked about Santa this year and was excited to meet him!

Over the last four months we have really noticed how any sort of allergy/asthma medication effects Landon behaviorally. Unfortunately his asthma needs to be treated daily with something and we needed a solution. A few had posted and commented to try Essential Oils on our little guy. Of course I was skeptic, who wouldn't be! Though I did lots of research and talked to some friends about what essential oils would be best for Landon. In the end we have completely switched over to using daily essential oils to help control minimize some of Landon's allergy and asthma symptoms. There have been a couple of times we needed to intervene with fast acting asthma medication (nebulizer) but most often we use a Breathe Blend oil three times a day on our little guy. We have also started to use a few other essential oils to help with his GI issues and sleeping difficulties. On a side note our little man does smell lovely these last few months!

In November we had an appointment with the feeding team at Lurie's CDH to discuss what we can do about Landon's eating issues. Long story short the team felt that Landon has a sever feeding disorder that requires possible inpatient treatment. Unfortunately this treatment is only offered in Evansville, IN or Texas. Of course this is hard to process but we really feel this our only option. We will go out to IN in March to have Landon evaluated there and then they will tell us how long he needs to be there. The plan as of now is for he and I to live there for the length of the stay. Quinn will stay back with Ben with the help of Nana! They will hopefully come down on weekends to visit us.

In December Landon turned 5, FINALLY gave up the night-time pacifier and we were able to urine train him! December was a tough month for our little guy but he came out strong!! We are so proud of how far he has come in potty training. We still are working on the bowel training but we have a great ABA therapist who helps with suggestions and ideas. Someday he will be completely potty trained!

Hawks Christmas Party Fun at Navy Pier

"Mama, its Brent Seabrook!"

Skating on the UC Hawks Ice!

Hawks Home Opener! Someone LOVES Hockey!

First time out on his Backyard Ice Rink!

Loved Christmas this year!

Taking A Look Back....2014-Quinn Renee

Like I said in my previous post I have been MIA and need to get caught up! Let's start with Quinn!

Quinn Renee:

Quinny-Ree (as we like to call her at home) is starting to make progress in her speech. She is finally able to put two-word phrases together and working on telling us what she wants or needs. She is still struggling with more than two-word phrases and when she is frustrated it leads to an all out meltdown! Her therapist are working really hard to help her catch up and grow developmentally and verbally. In September she started a weekly Y class for 2 year olds and she LOVES to go. It is her chance to be like her brother and go to school. She is starting to learn the routine and enjoys being with other kids her age. She has had a few play dates with our sitters friends and I have heard nothing but positive feedback from Suzi about her little girl!

In October we attended our first Apraxia Awareness Walk in Westmont. It was a chilly and wet day but we had amazing support from friends and we all were noticed with our AWESOME Pink Tutu's and Team Quinn Renee shirts! Our little girl was recognized and received a medal along with the other children. We had an awesome experience and look forward to next years walk.

In January Quinn had her first of many appointments at the pre-school as we start her transition! It is still hard to believe our baby will be 3 in April. The school district would like to evaluate Quinn in all areas: speech, motor, cognitive, social, emotional, and a non-verbal test. The school kept asking me if this was ok, and I of course had no objections. In my opinion let's get her tested and find out what will lye ahead for her in the sense of learning and school! In March she will attend a 2-3 hour testing session (lord help those teachers and myself) that will be conducted by a slew of people! Poor Quinn, I see many frustration meltdowns in her future during this process! We will then go back in the middle of May for her IEP meeting and find out what she qualifies for exactly! We are hoping for 5 day a week Pre-School that is a language enriched program! Fingers Crossed!!

Quinn still takes Dance class once a week and is starting to do a better job of participating with the other little girls and teacher! I was able to see her in action and was blown away by her progress and change! Quinn really enjoyed the holidays this year and loved opening presents!! Here are some pictures of our little girl in action!