Xander’s Believe It or Not!

I have spent the majority of my time writing about our journey with Apraxia and while that is why I began this blog, I have always felt like it was just my “thing” to help deal with all we had going on with Arianna but I’ve also felt like I let Xander down a bit as he’s just not as involved. This page will try and help solve for this.

To let you know a little about our son I will begin by saying he is 8 years old, he is very much a boy’s boy = girls have germs, and he loves bugs and gross stuff.

He absolutely LOVES science and anything related to science. He eagerly soaks up information about anything he is remotely interested in. Currently it is life sciences and also recycling and being “green”. He is a member of the “Green Team” at school where he assists in collecting the recyclables from classrooms two times per week before class starts. He genuinely loves school and learning though he will tell you differently at times. This year he made the Math Bowl team and will compete for area title at the end of the month.

He has also been active in his last year of Beginner division bible quizzing with our church. We have merged with another church in our area and together the team has really excelled and we hope to make it to Nationals this summer.

I am opening a page for him to express his thoughts this summer to help prep for 3rd grade and the intense writing he will face there. He really isn’t a fan of writing and much prefers math and science. I hope you enjoy his stories or whatever he chooses to share over the next few months. I am giving him free reign and he can pick his own topics to write about.

All I ask is for you to please leave him a comment or two to encourage him as he tries this route of expression. Thanks in advance!

His posts will be titled under Xander’s Believe It Or Not. Look for some interesting and probably strange posts coming soon!

Back from the dead…

Well, I have abandoned my space here for long enough and while I don’t have a functional keyboard on the laptop I do have access on my iPad so here we go.
I had been a bit uninspired as of late on what to write about. It’s been 6 months since I have opened this page and out my thoughts to words.
In 6 months we have celebrated Christmas, New Years, Valentine’s Day, St. Patty’s Day, and Easter. We have had some really great times and lots of fun. As we near the end of the school year we are looking forward to VPK graduation and moving onward to Kindergarten and 3rd grade. The summer holds a lot of excitement for the kids with lots of swimming and field trips lined up.

I just wanted to take a moment to let my readers know I am alive and the family is as well. We are doing great and excited about what is to come.

Thankful.

November.

November seems to be such a flurry of activity for everyone. For us it is full of birthdays, holiday prep, Holiday launch (for me at work), and of course Thanksgiving. Forgive me if I offend anyone by referring to Christmas as Holiday – its ingrained in my brain from working retail for the past 15+ years.

Thanksgiving brings around a renewed sense of “thankfulness” from all our friends via their social networking sites. While I think it is great that we are sharing what we are thankful for each day or 5 days at a time… speaking from experience. At this point I don’t remember the last day I posted a “thankful” post. I am terrible at remembering to do that.

This week I want to share something that I am REALLY thankful for. {A} our 4-year-old with Apraxia of Speech attends a local private preschool daily. She is enrolled in a VPK program and is doing really well. The other day her teacher approached me and wanted to share a story with me. Another little girl in the class had asked Ms. H. about why they didn’t always understand {A} and she explained that {A} has something called Apraxia and that it makes it a little harder for her to talk and be understood but that she is learning and trying really hard. Later in the week during circle time {A} was trying to share at story and Ms. H was having a bit of a time understanding and the same little girl who had asked the question earlier spoke up and said “I think she is trying to say ………” and helped my girl in a time when she was struggling. I am so thankful for a school environment that fosters love and support for everyone. That they take the time and share with the other kids how to help and that those kids are being true friends to my little one. I hear some pretty sad stories from other SN parents about their children’s school experiences (even as young as preschool). We are so blessed to have an amazing environment for her and I am truly thankful for that this year.

{A}
{A}

Another thankful moment happened last week. I attended our oldest child’s {X} Inventor’s Convention for his class. This unit of inquiry has been around problem solving and each child had to create an invention and build it to completion from problem to resolution. It was a great process and he absolutely loved it. He is one of the most inquisitive kids I have ever encountered. He soaks up knowledge and seeks out learning opportunities ALL THE TIME. I love it. I won’t lie. So during the convention his teacher came up and was sharing a story of how he had exercised patience (for those who know him – you KNOW this is HUGE) and then shared his problem resolution for a guest in the class earlier in the week. This guest had posed a question to the class and while others blurted out answers quickly {X} thought on it and then planned out a resolution before sharing. He followed the whole process that they had been focused on throughout the unit. His teacher was so impressed by his grasp on this process and how he had just summed it all up in one moment. While sharing all this with me she was getting emotional in how proud she was of that small moment. I LOVE and am SO THANKFUL that he is blessed with a teacher who truly “GETS” him. He’s not the average kid and is always outside the box in his thinking/processing. I always get nervous as a new school year begins with the wonder of how this teacher will respond and challenge him. Ms. S – has NAILED it this year. For that I am thankful. It may seem like a small thing to some but when a teacher can engage a class and get them excited about learning, that is a gift.

{X}
{X}

I also want to share my thankfulness for my husband. He is a rock in our life and without him I really don’t know how we would make life work right. He is on “Morning Duty” most weekdays while I work early, He takes our little {A} to speech therapy most weeks and ensures {X} is on his bus and headed to school before going to work himself. While mom gets afternoon duty I am so thankful that I have someone for early morning “mom duty”. I am so thankful for how much he loves and cherishes his children. They adore him and he them.

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Family is a magical thing when you take a moment to just watch the interactions. Sometimes…not so magical. Like when your 8-year-old sneezes boogers all over your arm and then your 4-year-old decides that peas are for smashing all over the table. Its life though and while sometimes its hard, I think of dear Glennon and her catchphrase “We can do hard things”. We most certainly can. When you have those moments where you question the whys, when you want to the REASON behind the delay/disorder/diagnosis, just remember that so many have gone before and been in your shoes. We KNOW how it feels and the best part : There will be a day when you look back and you are THANKFUL for the apraxia or whatever it may be. That child will teach you more than you ever thought possible about the world and the people in the world. You will learn to see things in a different light. You will treat others differently because of the challenges and struggles that you experience with your child. I say this because 2 years in. I’ve been changed. I am thankful for this change and all that I have learned. I am thankful for the special needs community which is a group of some pretty fantabulous people who are here for you no matter what! Thank you to all my friends and family who have given their support in the past two years plus as we have journeyed on this Apraxia walk together. You all mean more to me than you will ever know.

Happy Thanksgiving Friends!

Trick-or-Treat!

Our Little Ladybug

So our HUGE Halloween News for the year: {A} was finally able to say “Trick or Treat”.

Soak that in people. 4 years 9 months old. It did come out more “Tick o Teetos” (for some reason she kept making it “treaters” but thats ok… we go with it!)

She was IN LOVE, complete and utter LOVE with Halloween and her “Caatoom” (costume) this year. I was in complete and utter love with her and her costume as well. She was too darn cute for her own good. Her brother’s costume was not quite as exciting and he was definitely the ONLY “Dr Who” in 2nd grade at his school.

Here are some of our Family pictures from the week of Halloween Fun: Enjoy!

Troll Face Pumpkin …. picked by {X} and executed by Daddy
Dr Who and the Dark Shadow – almost sounds like an episode!
Me and My lady Friend “V”
Our Crew….or at least the costumed ones

OH…. and some more HUGE news: This happened at the school Fall Festival. See that ladybug climbing all the way up on her own?? Yup. Take that gross motor skills! She’s got this! Previously this would have been so hard for her! She did it over and over again! 032

 

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I have to say its been a fun month full of surprises and while I could probably write a book about the whole month I will break it up. Tonight I will focus on Grandparent’s Day.

I was able to take that day as my day off so I could help the school in setting up and see the fun program the children had prepared for the grandparent’s and special friends.

Ari was so excited about her grandparents coming to see her school and her new class. She kept saying “Gamma Wonder and Paw Paw and Buela coming to my cool” I would reassure her yes, they were coming!

I have to share with you all that my kids have some of the best grandparents around. They will do absolutely anything for their grandkids! My mom and/or my mother-in-law give up almost every Saturday morning/early afternoon to care for their precious gems. We are eternally grateful for their love and endless support they offer these two hooligans of ours. I have a few photos from grandparents day to share along with a video of Ari’s class performance. I just want to share that this is HUGE for Arianna. A year ago she would have been in my lap watching her classmates sing and this year she was one of the most engaged and excited for the show. I love the progress we are seeing in our little Apraxia Angel and I can’t wait for more!

*Disclaimer – the sound is a bit off in the video (low and muffled) but they are singing “You are My Grandparents” to the tune of “You are my Sunshine”. At the very end they sign “I love you” – She has a bit of a hard time with this so I wanted to share what she is trying very hard to do. Enjoy!

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Go The Distance

*This weekend we will walk to honor Arianna and all the other children with Apraxia of Speech at the Tampa Bay Apraxia Walk. We have been blessed to meet so many amazing families and share in this journey together. This Saturday we will dedicate songs to our Apraxia All-Stars. Arianna picked this song as “Her” Song. Enjoy.*

“Go The Distance”

I have often dreamed, of a far off place
Where a hero’s welcome, would be waiting for me
Where the crowds will cheer, when they see my face
And a voice keeps saying, this is where I’m meant to be

I don’t know what Arianna’s dreams are but I know she has dreams. She may not be able to tell me what she wants to be one day when she grows up but she is destined for something great. She came into our life not only for us to love and cherish but to teach us so much!

I’ll be there someday, I can go the distance
I will find my way, if I can be strong
I know ev’ry mile, will be worth my while
When I go the distance, I’ll be right where I belong

She will be there someday, she can go the distance, which she shows us daily in her struggles and successes. She will find her way, because she IS strong. Every step will be worth her while and she will be right where she belongs in life!

Down an unknown road, to embrace my fate
Though that road may wander, it will lead me to you
And a thousand years, would be worth the wait
It might take a lifetime, but somehow I’ll see it through

Down an unknown road hits so close to home. We had no idea where this road would take us when we embarked on it 2 and a half years ago. We didn’t know how much we would learn and still be learning about Apraxia and so many amazing families that we have met and formed friendships with through this journey. It will last her lifetime but she WILL see it through.

And I won’t look back, I can go the distance
And I’ll stay on track, no, I won’t accept defeat
It’s an uphill slope, but I won’t lose hope
Till I go the distance, and my journey is complete

We won’t accept defeat. We won’t accept “No” or question whether she is capable of overcoming an obstacle. We are on an uphill slope and gaining hope to go the distance. It is a big hill to climb some days but we are strong and we have faith that God will see us through all the tough moments.

But to look beyond the glory is the hardest part
For a hero’s strength is measured by his heart

Her heart. It’s a hero’s heart. She loves unconditionally and completely. Arianna embraces life and is eager to begin everyday. She has friends she loves to play with and a slight obsession with a certain Mouse who lives about an hour away from us. She adores her brother and will eat ice cream at any time of the day. She lights up our lives and many others as well.

Like a shooting star, I will go the distance
I will search the world, I will face its’ harms
I don’t care how far, I can go the distance
Till I find my hero’s welcome, waiting in your arms

I will search the world, I will face its harms
Till I find my hero’s welcome, waiting in your arms

School Based Services

Over the past two years as I have become immersed in the special needs community I have found I go in waves. In the beginning I was obsessed with reading and soaking in ALL the information I could find about Apraxia. As I learned more and became more comfortable I eased up and it’s not so much of an obsession but rather its just life. As we began our journey I learned that there are many services available for free through the school system in our county. I began the process of trying to get Arianna qualified for some of these opportunities to help her along with the private therapy we were already doing. It took 3 tries for the social workers and therapists to say that she did qualify for services. She literally did the final evaluation in January and began her services in February and turned 3 in April which pushed her into a different county program and she had to be re-evaluated in April and basically “re-qualify”. However by this time at 3 years old her verbal speech was still VERY limited and we had just recently received the actual diagnosis of Apraxia from her private therapist. Needless to say the first person to provide services prior to her 3rd birthday was a “Developmental Therapist” who was a very sweet person but had NEVER heard the term Apraxia in her life. She was in awe of me and asked me for so much information and basically asked me what she should do to work with Arianna. I don’t think she understood a word I told her because all they did was play with blocks. ANYWAY. It was only about 2 months that she came to work with Arianna and only once per week. I wasn’t too worried because I preparing for our real meeting and the ever dreaded IEP discussion that I knew we would be facing in the near future. I reached out to friends, asked MANY questions of other apraxia mommas in forums and on facebook. I was scared. I knew that I wanted to get the best I could for Arianna without being too overbearing. I have learned that you tend to get more help when you are willing to help them as well. We made it through the meeting and made arrangements for Arianna to receive services at her preschool for 60 minutes/wk – 2 (3o min) sessions in group therapy. At this point in her progress we were also attending private therapy 3x/wk so she was getting 5 sessions/wk which was AMAZING, and expensive. Our first school therapist was terrible. I never met her. She apparently was constantly calling out and not coming to the school and I received almost no communication from her beyond what the director relayed to me. The day I lost my patience was when I was told that she had not come that week because she was getting married. Ok, I get it, it’s an exciting week and you don’t want to work. Well then take vacation time, communicate to parents ahead of time and it might have been ok. However, the previous incidents of less than stellar work proved to be my opportunity to alert the county to the problems I was seeing. Next thing I knew we had moved on to a new therapist.

Ms. Nicole called me several times, we met at the preschool and she attended Arianna’s IEP meeting with the staffing specialist so that we could align and ensure we all had Arianna’s best interest at heart. So far I was impressed. My guard was still up though because the past 2 experiences were definitely LESS than what I wanted for my daughter.

Ms Nicole has proved to be a true gem in the county system. She worked around our schedule as best she could and moved days to arrange to come on Arianna’s opposite days from private therapy. She also advocated for Arianna to receive summer services this year. Currently her schedule for this school year conflicted with our private therapy and would total and hour and a half straight in therapy. HA. I do understand that there are SO many children in the school system who receive services but I am a mom and I want what is best for Arianna.  Ms Nicole is such an amazing person who has been trying everything she can to swap out a day to free up time on another day so she can make sure Arianna gets the best services she can. Not only did Ms. Nicole finally make it all work, now she is seeing Arianna alone which is what is ideal for Apraxic kiddos. Arianna is truly blessed to have Ms. Nicole in her life. It’s not often I hear stories as wonderful as this coming out of the county therapy system. It is heartwarming to realize that there are those who take their jobs seriously and truly care about the kids.

What are some of your experiences with school based services? I am anxious to hear how things may change once she enters elementary school next year.