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.

Open House

Open House

Open House.

Arianna was SOOO Excited about sharing her classroom with Xander, Abuela, and I last week during her school-wide Open House Night. She ran from center to center to show us each area. The classroom was decorated with the children’s work and examples of some of the projects to come throughout the year.

Ms. Heather is possibly surpassing Ms. Meghan as Arianna’s favorite teacher. She LOVES her new “cass” and “Ms. Heador”.  Ms. Heather has been so fabulous with working on learning about Arianna and Apraxia. She has met with the school therapist and is more than willing to work on anything that is suggested. She gives us detailed reports on how Arianna is doing socially and her interactions in the classroom. She has even expressed surprise at how much Arianna is trying to converse. To me it is such a relief. If she is opening up and really conversing however unintelligible it may be at times it shows me that Arianna is completely comfortable in her new environment. I tend to go into the classroom environment with my head in a bubble of apraxia. I don’t know if that makes any sense so I will try to explain it. I am so accustomed to listening a little closer and deciphering language to engage Arianna that I just sort of expect other kids her age to be the same. Its been awhile since Xander was 4 yrs old so you kind of forget what is the “norm” for typical kids. While I know she is not a “typical” kid in the medical world in my world she is. So when I enter the classroom setting and hear other kids conversing so easily with their parents it almost takes my breath away for a second. It’s so hard to express to someone who doesn’t live in these shoes as a mom so this is why I chose to post the picture above. Along with Ari’s apraxia she also has low muscle tone and some sensory integration “stuff” that all seems to go along with most apraxic youngsters. Her low muscle tone has hindered some of her fine motor skills and she also has difficulty in remembering her ABCs in sequence or her numbers (although she is showing improvement in counting and can finally get to 15 w/out forgetting a number!) Needless to say her drawing and writing skills have a LONG way to go. I am not ashamed to say that when I first looked at this picture above I got sad. Sad that some parents who don’t know anything about Ari might think she isn’t as smart as their kid or others in the class. Sad that I know her successes are going to take longer to achieve than some of her peers. Sad that she isn’t at the same level as her peers in many areas. I left Open House a little defeated that night.

Then… a few nights later Ms. Kat, the director at her preschool posted this picture that she snapped during Open House.

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As you can see….my kids are TOTALLY normal. Ha.  As I was scanning the other family photos from the evening ours was definitely the ONLY one where the kids weren’t smiling “perfectly” for the photo. However, this is completely “normal” for our family. One crazy face and the other …. well you can decide on what that face might mean. :)

While Arianna might lack in some of the “typical” development milestones through VPK this year we are making some MAJOR improvements in other areas. For one, her conversing so easily with her friends and teachers is indicative of a high level of trust and comfort for her. Another HUGE milestone is that this week we only had ONE potty accident ALL WEEK LONG!!!!! Holy Moly! HUGE! For all you special needs mommas I KNOW you understand how amazing this is. I attribute it also to a teacher who really cares about her children and truly wants them to succeed!

I know being a special needs momma is going to have these roller coaster emotions of ups and downs, successes and failures, opportunities and achievements. Through it all I know that every night I can come home and love on my little “mermaid” and everything will be alright!

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Back to School!

Summer always seems to throw me off my routines and make my brain a little crazy. I attribute this to trying to keep my very active and smart almost 8-year-old son occupied with things other than video games. As August nears to an end and I know that school is beginning life just seems to settle back into the normal pace and Mommy is much happier. This year Xander is entering into second grade and Arianna is now a big girl and began VPK (in Florida this is a voluntary Pre-K program that helps get the children ready for kindergarten).  It is a bit more structured program and I was a bit worried about the transition from her Pre-K3 classroom into a new building and two new teachers. As a parent of an apraxic child its daunting to begin a new year and begin the process all over again. The summer was very hard for Arianna as she was in a different classroom with a different teacher than she had for her whole PreK3 year. Ms Meghan and Arianna had formed an amazing bond last year and we saw great results over the course of that year. You can read about that here on You’ve Got a Friend in Me. As we drew nearer to the VPK year beginning I worried about Arianna, and got excited for Xander . Ha.  We had made sure to alert her new teacher Ms. Heather about Arianna’s needs and about Apraxia in general. She met with Arianna’s speech therapist who comes to the school each week and was excited about having Arianna in her room. When last Monday rolled around it was an exciting but scary moment walking into the classroom. Arianna immediately noticed the class gerbil who has a name that I cannot understand coming out of Arianna but it sounds like “Syum” so we’ll go with that. She helped put her blanket in her cubbie and hung up her backpack like a big girl. She was ready. No tears at all! She was awesome! Daddy picked her up later that day and she told him “I lite my cass” MUSIC to my ears.
Every morning since she has asked to go to her new “cass” and has transitioned like a champ. This mommy is completely relieved!

To those other mommys who are sending their little ones to preschool for the first time or just beginning a new program or teacher, I want to encourage you to be proactive with your schools and teachers. Let them know the needs of your children and provide them with resources to learn more if they choose. Also try not to worry too much. They will make friends and they will learn pretty quickly how to get their opinions known or their needs met. As I noted that I worried about the transition, yes, but I didn’t worry about her socialization. She can be shy but she definitely warms up pretty quickly because she’s nosy and has to be in the middle of anything that looks fun! She may not talk much in a group setting but she gets involved and will participate even if it’s silently.

We get to go to open house this week to check out what she has done her first week and meet other parents as well. Its been an exciting and fun week all around at school! I wish everyone a FABULOUS school year! I will post some 1st day pictures on Wednesday for “Wordless Wednesday” which I plan to try to follow from now on!