Updates

Neglectful isn’t even the word for my lack of attention to this blog. I think its been about 2 years since I have even touched the keyboard to share my thoughts and feelings about this journey we are on. In those two years so much has changed in our lives and yet remained constant.

I will start with A. She has started “real school” and in her first year of kindergarten we faced a lot of challenges. She did not like the SLP and thus was not productive for the whole year but yet didn’t lose any of her sounds or regress. However, our challenges came with the academic load she faced. We began the process to have testing done and see where we could offer more help for her academically. She wouldn’t cooperate with the school psych and so we put it on hold and held our breath to see how the year would end. At the end of the year as we approached IEP time we faced the decision of retaining her for a year and repeating kindergarten. We did feel this was the right option for her and went ahead with it. This past year she went back through kindergarten with a new teacher, a new SLP and a new school psych. It was the trifecta for her. She left kindergarten with a solid first grade reading level and while her handwriting and content of her writing is still very weak and her math skills are not where they really should be she is making steady progress. She is also receiving pull out services for these areas and I know with her current ESE team and the others in her school supporting her she will continue to make progress. Her speech has come really far and I am happy to share that she is understood pretty clearly almost everywhere we go now. Her biggest struggle is when she is really excited and talks too fast or is tired and it’s just hard to understand.

X is his typical self. He’s had two stellar years with his school performance and was on the math bowl team last year and this year participated in the robotics club and competed on a team at a district wide competition at our local science museum. He is still involved with bible quizzing at church and is getting ready to enter his last year of elementary school. I can’t quite believe that. It has gone so incredibly fast. He’s had some really amazing teachers over the years who have truly helped shape him as a student and give him a great base to enter secondary education with. Teachers who get his “quirks”, who let him be himself and express himself in his schoolwork. So thankful for all of them!

As for mom and dad……well, we have had some changes too. We both changed jobs this year after 10+ years with our previous employers. That was a huge change and a little scary but after a few months we are settling in and we both agree that where we are now is right where God wants us. Dad is working for Liberty Mutual and I have joined the flock at WaWa.

Other than that all is normal on the home front and I plan to try to keep up with this blog again…..plan to…. key phrase. I would love to know how everyone who may possibly still be reading this is doing! Please comment below and let me know!

 

 

Share this:

First I want to apologize that I have sorely neglected my little space here on the interweb. The fall season tends to be so busy and full of stuff that I put other non emergencies on the back burner and then forget about them. Couponing is another thing I tend to let slide and then along will come January and life slows down again and I resolve to do better and make time for everything.

Today I just want to send out a quick update about my little A. She started Kindergarten in August and I was so apprehensive. She is quite the social butterfly but she is still quite unintelligible in long connected speech. I am no longer worried about her one or two-word responses as those are understood and she can make her basic needs understood to be met. She was so excited about starting kindergarten and honestly has only had a few days that she doesn’t want to go (typically if she knows mom isn’t working that day). I am happy to report she is doing ok and better in some areas than I expected. We are really struggling with reading and writing as those skills are built as children begin to speak and honestly we didn’t get much verbalization until about 2 years ago so she is still relatively behind her peers in that area.

Together with her teacher and SLP at the school we began the process to get an AAC device for her to demo and see if it will help her in the classroom. I love our school and the team there. They are so incredibly supportive and we are currently demoing a device in the classroom and this week they are coming to work with the teacher and show her how to better utilize it during daily interactions. The opportunities are endless for her once she fully understands the functions of this device.

Over our Thanksgiving break we visited the Kennedy Space Center and after I was able to add in pages on the program for her to share with her class so they would understand and know where she went. They say simple sentences like “We visited the Kennedy Space Center”, “I saw Space Shuttles and Rockets”, “We also saw an Astronaut.” I also added in buttons about Thanksgiving for her to share as well. It truly gives her an easy way to share in the classroom and be fully understood.

I am really optimistic on how the year is progressing and while we may face keeping her back a year and repeating kindergarten I know in my heart that would be ok. She is on the younger end of the kindergarten group and with the challenges she has faced it is a definite possibility for her. Will it be hard to see my friends littles move on without her? Sure, but it’s already hard sometimes when I see what others are capable of vs her. However, I will never let those feelings overshadow her amazing personality and drive to succeed. This little girl comes home from school exhausted and after her nap she almost always wants to do her “homwerk”or go on iStation (school reading program we have at home on our computer as well) and do more school work. She has more will and intent to succeed than many other littles I have seen.

That about sums up our year so far in Kindergarten. I will be sure to stop in more often and keep this current and relevant!

The Endless Battle is OVER ….. or Back to School

Today the kids went back to school. I have one word to celebrate this joyous occasion.

HALLELUJAH!

While some parents are emotional about the beginning of kindergarten for their littles, which I GET it. I really do. I felt a little emotional when my oldest began the journey into Big School. This year however…. nope, nada, no sadness. It was pure joy to know that the days of endless fighting has ended. I grew up as an only child and thus this mystery of sibling rivalry and fighting with your brother or sister was foreign to me. You may think I am lucky, I do now. When I was a kid though, all I wanted for the longest was a sibling to play with. I had HIGH hopes for my kids that they would treasure this gift of siblingship (I know…its NOT a word) that I so craved as a child. Then once Ari was diagnosed with Apraxia I thought well maybe it will take longer for them to start fighting because she isn’t very verbal, especially when she gets upset (she tends to be harder to understand and doesn’t usually want anyone around her).

Then…….Summer 2014 came. They had the privilege of spending the end of the summer out of camp and in each others company EVERY SINGLE day for about a month and half straight. Last week I think I finally LOST my mind and any remaining patience that I may have had saved up. It truly felt like they just could not get along no matter what you tried. Even when they were playing together they were play fighting. Baby doll vs. Paint sticks….. I found myself counting down to today.

Last night we went to meet Ari’s Kindergarten teacher and give her some information on Apraxia and all that fun “new school year stuff”, Ari made herself at home and checked out the room. Made sure she knew where her desk was and also where her spot for circle time was too. She sort of said hi to the teacher *at least made eye contact* and we went on our way.

Today was the big day that we had been anticipating all summer long. I can’t even begin to tell you how I agonized about this day. 3 years ago when my beautiful little girl who had only 2 sounds in her vocabulary began her journey in Speech Therapy with her amazing therapist Ms. S. I was SO scared for our future. We didn’t know what the diagnosis was or what to expect. After learning about Childhood Apraxia of Speech I was even more scared and nervous about her future success. I read about other parents who had older children in elementary school who were doing great but that didn’t help me much. That was them…. this is my little girl. What if she didn’t progress the same way? What if we could never whisper silly secrets to each other? What if she never had friends to talk to and laugh with and have sleepovers with? The pain or grieving process that you go through when your child is given a diagnosis of something severe is real people. The unknown is downright SCARY and it is OK to feel that way. Its ok to be mad that your child has more of a struggle than their sibling or cousins or neighbor. Its not OK to continuously dwell on it though and let the pain overtake you.

I will say once we got more informed and educated about CAS my outlook got brighter and as Ari has progressed through speech therapy she has made SUCH gains in her communication skills. She does speak in sentences now and family understands her probably 75% of the time. I think I understand her about 85-90% because I have to. Its my job as mom to learn what my child is communicating to me.

As we were driving to school this morning and I was thinking about how she might do today in a new classroom (transitions in preschool weren’t the easiest at first and this is a completely new school) with a new teacher that she had only seen once. I felt like she may have some struggles but I pushed the negative aside and kept the drive very positive! She was ready to go! When I got to the school I had a text message from Ari’s speech therapist who we said goodbye to on Monday (long story). Mrs. S. thanked me in the message for allowing her to spend time and work with us over the years. That is when I got teary. I was more sad over losing her therapist of 3 years than handing her off to a new teacher/school/environment. I felt that may be ironic but my therapy moms will get it. It really made today feel like we were starting a new chapter with our big girl.

She had a great hand off and got right to business doing bell work and coloring her picture. At pick up her teacher gave me a good report and when I asked Ari if she likes Kindergarten she said “YET” (yes).

Meanwhile we got home and she fell promptly asleep and there has been NO fighting all afternoon. God does love me!

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}

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}

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.

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!

 

Share this:

 

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!

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.