Butterflies, determination and new beginnings….

Butterflies have descended upon my stomach and seem to refuse to go away. It all started on Friday afternoon when the realization that I had to run a 5K race on Sunday for the CASANA Apraxia event fell on my head  like a large boulder. I hadn’t run a mile in over a year and I had no business even attempting to run a 1K let alone a 5K. Between work, school, kids, life in general, I couldn’t seem to gather enough energy to get my butt out and running. Simply put; I’m exhausted. I figured that I’d be ok and that somehow I’d make it through. Yeah I know… Not my most brilliant moment. Why, you ask, did I do this? One word. Eli. The way I see it; Eli has had to fight to accomplish almost every single developmental milestone in his life; from eating to speaking to coloring. Every challenge, every teary eyed therapy session was met with strength and determination that never ceases amaze. So if my little 4 year old conquer his fears day after day then Mommy can deal with her fear of running a 5K and just suck it up. And I did! Sort of….. I kept my expectations fairly low. All I wanted was not to look like an ass and make a fool out of myself in front of complete strangers. Eli’s little face was etched on to my brain keeping me going. There was a time, however, that I seriously considered walking back to the start and calling it a day. With the exception of a few other unprepared stragglers I was almost by myself when I saw hubby alone on the side of the trail cheering me on. When he saw me about to burst into tears with frustration he ran along side me and talked me through whispering words of encouragement as we ran. It’s at those moments that I am reminded how lucky I am and how I love him so.  After speedwalking about 90% of the run, I ran the last stretch (where everyone was watching) to the finish line  so as to avoid the whole not looking like an ass thing. (Yay!)

The walk portion of the event was after the run so Eli, hubby, the girls, friends and Eli’s teachers did that part (without me because I could barely move after the run!). Team Elias was a success and I am so touched by all the friends, teachers and therapists that came out and supported us and the cause to bring awareness to apraxia… Thank you guys…. I appreciate it from the bottom of my heart!

Here I am Sunday night and after today the butterflies should have flown away, but they are still fluttering in my stomach. Eli’s first day of school is tomorrow and so begins an additional 9 months of anxiety. Due to Eli being nonverbal for the most part his communication book becomes my lifeline in being able to understand his routine and catching a glimpse of how he is progressing. As soon as I get home the first thing I do is tear open his backpack and look for the book.  I scour the few precious sentences from his teacherfor any indication on his happiness, progress and even stubbornness since he can’t tell me with his own words. So my heart will be in my throat from the moment I leave the house until I get home to read that report. That and Eli having a new aide to greet him when he gets to school has my stomach in knots. One day I hope that the butterflies will leave and only make themselves known to me when I see them gently gliding in the air. In the meantime, I know that as a mother that feeling will never completely go away..

Reflections

As summer winds down and autumn quietly descends upon us I begin to reflect on all the has been accomplished and all that is left to be done.

In a nutshell:

Boogie went to day camp all summer at a lake about 45 minutes away from here in what I think is in a pretty rural part of the state. She ran around, swam, played and is now a taller, leaner, tanner, more confident little girl than when she started. She is now a swimming queen and a Minnow I (yay!)…. I am truly blessed to have a daughter like her. Don’t get me wrong; she has her moments like any other kid, but she displays a level of patience and maturity that I never possessed at that age. She is my joy, my heart, my pride.

Eli attended his school’s extended school year program (ESY) and did great! I worried over whether he would adapt well to the new school building, classroom, teacher, aides, babysitter. After a few rocky days Mommy was pleasantly surprised when he started going to swim class at school, participated in the school summer production on stage (He didn’t run off the stage!!) and even started sitting on the potty. Ok no willing peeing yet, but we’ll get there. More words are coming out now and with improved intonation with a wider variety of sounds. Thanks to his speech therapist’s tenacity Eli goes to speech happy and compliant. It truly amazes me when I think of all the things that he has had to overcome. All the things that we take for granted with other children that are easy for them seem like insurmountable, looming mountains for Eli. We cheer each accomplishment and for those few moments of joy we forget the worries..

I finished two summer courses with A’s and completed the CASA training course that I always wanted to do. The fall semester brings me four classes, five times a week. Those courses plus my spring courses should hopefully mean that I will graduate in May (yay!). In addition to that I am going to be doing another training course for an amazing opportunity to learn to become a better advocate for my son and others; this one is one weekend a month for eight months. I only pray that my kids and hubby won’t forget what I look like until May (Thanks Hon.. Love you).

On another note, Team Elias is ready for the 2012 Apraxia Walk/Run on September 9th! Last year, a few days after Eli was diagnosed, we participated in our first Apraxia Walk. As we were waiting for the walk portion of the even to start we sat on the sidelines as the runners for the 5K crossed the finish line. Towards the end of the pack was a lady that ran with more determination than the others. She looked a bit out of shape and I wondered why she was running. As she crossed the finish line I saw her run to her little boy and give him a big hug with a joyous look on their faces. It dawned on me that she ran for her little boy with apraxia. Our children have to fight so much to do tasks that are seamless for us, but difficult for them. If my Eli can be a fighter then so can I. So despite Hubby repeatedly asking me, ‘Are you sure you want to run?’ (FYI I hate exercise..) I signed up for the 5K run. I’m not sure if I’ll run the whole thing, but I’ll make it across that finish line somehow!

If you’d like to support Team Elias for the 2012 Apraxia Walk/Run by running, walking (the more, the merrier!) or donating please go to https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1014964&supId=339402837

Wish me luck! 😉

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Please Join Team Elias!!

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Boogie and Eli

Ok so here I am….. yet again I have fallen off the blog writing wagon. That’s it!! No more promises about writing everyday, every week, every year…. Of course I have all the good intentions of writing everyday, but darn it!! Life keeps getting in the way!!! 😉

We are now in July and summer is in full swing here in our house. Mommy is thrilled because it’s sweltering hot outside and she can go to the beach. Daddy is complaining about the heat.The kiddies are both out of school and keeping busy. Boogie at day camp all summer long. She comes home chattering about all her daily adventures. Looking tanned and healthy from the clean mountain air, not to mention the nonstop activities, I am so thrilled that she is so happy!

Eli had two weeks off from school until Extended School Year (ESY) starts for 6 weeks then another three weeks off until school starts again in the fall. In the meantime, we have been very lucky that a teacher off for the summer has been watching him for half the day, taking him to the park, bookstore, working on his school activity books so as to avoid any summer regression. Most importantly Eli won’t think that his program workbook has permanently disappeared and won’t be caught by surprise when he sees it again at school!! His babysitter is great and I am so grateful to have her. She has a lot of experience with children with special needs so Eli’s occasional meltdowns don’t faze her.

On the speech front, Eli seems to be progressing beautifully!! More consonant sounds are emerging along with words. Placing consonants correctly at the beginning of words are difficult for him, but he doesn’t seem to have the same issue with consonant word endings. For instance, you can clearly hear Eli say ‘wait’ and ‘eat.’ However, much to my dismay, the word ‘bye’ often comes out as ‘die.’ No matter how many times we say ‘Eli say buh’ and he repeats it correctly; then when we tell quickly to say ‘bye’… Well ‘die’ comes out…. Pretty funny when you get puzzled looks from the cashier at a store as the adorable four-year old says ‘Die!!’ with a big smile on his face as he walks away! I have been told that this is quite typical with children dealing with apraxia. All kidding aside, I owe a lot to the unwavering dedication from his school and private speech therapists. He still has three 30 minute school speech therapy sessions weekly plus two 30 minute private sessions at home. I am pretty sure these two ladies have wanted to leave the room screaming while pulling their hair out due to Eli’s stubborn nature, but they never did. Their dedication has shown great results and now Eli (for the most part) cooperates and dare I say, even enjoys speech therapy.

Fine motor skills, well, still are a royal pain in the ass. I still stand firm when I say that I truly think that Eli’s non-compliance in this area is due to his frustration in dealing with activities that he finds difficulty. The school thinks that it’s Eli’s stubborn nature. Maybe it’s a little of both? Anyway a Functional Behavioral Assessment (FBA) was written by the school behaviorist. According to wrightslaw.com an FBA is the process of determining the cause (or “function”) of behavior before developing an intervention. The intervention must be based on the hypothesized cause (function) of behavior. In our case this was a pretty long process where the behaviorist observed Eli’s behavior in different settings with various teachers/therapists.  This FBA has helped in the long run because it developed concrete strategies in dealing with the behaviors and, in essence, put everyone on the same page. Since the document was drawn up Eli has gone on to willingly join (and sing!!) in circle time, pick up a crayon independently and draw lines, and work on his program book (with assistance) for longer periods of time. For Eli, these gains are huge. He even got an award at the end of the year for improvement in scholastic areas 🙂

Also new for Eli, is that he will be getting a district appointed aide, that will help in combatting or preventing his other remaining issues, namely escaping/avoidance. If Eli can manage it, he will literally try to run away from whatever task is being placed on him. The time being spent on trying to get Eli back on task takes time away from his learning. So it is our hope that this aide will beat him to escape by literally blocking flight. If he turns and tries to run or avoid, she will be right behind him ready to turn him back around and get to work. God bless her! I have spoken to her and she says she is ready for the challenge! Oh boy…. Hopefully we can break him of his bad habits to get him over the behavioral hump and learning….

As far as Mommy is concerned, I am getting ready to start the summer semester at college. After all my credits were transferred and the classes that I have to take over the next few months, it looks like I may be on the course to graduate with my associates in human services by spring next year.. Yay! So excited! AND so thankful for Hubby and his support… I wouldn’t be able to even contemplate this goal if it weren’t for him taking over with the kids in order for me to take night classes.

On another note, Team Elias will be participating in the CASANA Apraxia 5K Walk/Run for the second year now. Despite my weight gain, I am determined to run it… (Eeeeek!!) If anyone would like to participate in the walk or donate for apraxia awareness please go our team page at : https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1014964&supId=339402837

All in all, it has been a great few months for us thank God. 🙂

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Back on track!! (For now)

Ok so I am admittedly horrible at keeping New Year’s resolutions! Not only did I fail miserably at my diet goals (I actually gained 15 pounds), but I didn’t keep my promise about continuing my blog.

So dammit! Now I am back on track! Between, school, kids and work it’s been a little crazy to say the least… Hubby has had to pick up a lot of slack and it hasn’t been easy. Even with his help I am freakin’ exhausted constantly and dragging myself around….. I have got to get my butt back to working out!

However, I am still no longer smoking (yay) and still in school, doing well! My determination there hasn’t waned!! I’d like to be done with my associate degree in a year so that I can transfer to a 4 year school ASAP.

Eli is doing well in his new school. I am blessed to have a wonderful team working with Eli. These ladies have hearts of gold and the patience of saints! Honestly, I don’t know how they do it, but they have found ways to work around his bull headed ways. They don’t give up and are determined to help him which finally gives me the peace that I didn’t have before. Speech therapy was increased from 2 times a week to 3 times a week and physical therapy two times per week was added to the mix. The physical therapy is new to the IEP since he is walking and on the surface looks ok. However, when further observing him you can see that he doesn’t have the fluidity in his movements that other 4 year olds have. He almost seems to toddle at times. When he was evaluated it was found that he has low tone in his upper body and his balance leaves more to be desired. Occupational therapy stays the same and he still has speech privately here at home 1-2 times per week. This is the comprehensive plan that I had been dreaming of for Eli! I am so happy with his new school, his teachers, his therapists. He even loves his bus driver and is thrilled to see the bus aide and bus driver every morning. Eli’s progress is slow, but moving forward! More and more approximations, words and new things in general are sprouting all the time. Yes there have been times that Apraxia and what it does to Eli has brought me to me knees with tears and frustration, but he is such a resilient little boy.. I admire his determination and guts (ok not so much when he refuses to be potty trained : / ).

Boogie is great! Doing wonderfully in school! She’s done with cheerleading clinic and swimming for the season, but still in Girl Scouts.  She is so extroverted, athletic and happy.. I am truly blessed. Thanks to grandma, Adriana will be at an awesome camp at a lake where she will be outside all day long. She is truly a joy; I love having a daughter like her 🙂

Though I trip and fall from time to time (lick my wounds and put some band-aids on) on the road of life, I eventually meander my way back on track….. Thank God.

Road blocks and fog

Broken resolutions already unfortunately… I wanted to write in my blog everyday, but it’s been too crazy lately with school, work, home, kids, etc etc etc … I really have to try to get back into the swing of things though because writing, I have found, is therapeutic for me.

So Eli just started his third week of school and well, it appears that the honeymoon is over. His daily communications home from his teachers aren’t as cheery as the first ones were. Now I can sense some frustration in his teacher’s words as she explains that Eli ‘continues to demonstate difficulty following the classroom routine.’ Here we go again…

This is Eli’s usual procedure when he starts some place new.. He is an angel for the first week and a half; then he proceeds to push buttons until he brings everyone to the brink of exasperation. Then it takes about another month before he will do all that he is supposed to do. Sigh… Yes I know he’s only four… It’s just that sometimes it gets really old. I tell his therapists and teachers to keep up the good work and just ride the storm patiently, but it’s exhausting to be honest having to keep the annoyingly positive attitude with everyone. The pity party isn’t productive; I just wish it could be a little easier.

I dream that words would just come pouring out of his mouth and that he would talk my ear off. I wish that he would eat everything without having to worry if he is chewing it right.

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I wish Eli would just listen to his teachers so I wouldn’t have to worry about what new complaint I will read in his communication book. I wish he would comply with his speech therapist and just comply with this saint that doesn’t give up.

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This is just one of the days that I am weary and worry about Eli’s future… There are days that I see the light at the end of the tunnel and there are days where I see nothing but fog and road blocks.

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My hatred for snow (the white crap)

RANT WARNING!!

Ok so I will officially proclaim once and for all that I hate the winter! This one season makes me want move to California and risk my life with an earthquake than to deal with this damned snow every year. I hate this white crap called snow. People that say that they just LOVE watching snow fall make me want to kick them! Yes it’s beautiful once it falls, but then it turns into ugly, gray slush that lingers what seems like forever.

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Not to mention it makes navigating roads practically impossible. I think we had about 5 inches of snow. (People in Minnesota must be trying hard to restrain their snorts of laughter… yes I know)
However, even the slightest bit of any type of precipitation converts my fellow Jerseyans into complete idiots on the road. Therefore, I missed my first class yesterday. It really bugged me to do so, but I did not want to encounter an accident out there.

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If it weren’t because I am determined that my children not have the same experiences that I had moving schools constantly (…and the thought of starting from scratch with Eli’s IEP makes me shudder..) then I would have moved some where longer a looooong time ago. This weather makes me downright cranky, miserable. I walk into work everyday with a scowl on my face as I strip off the endless layers of outerwear.

So I apologize in advance for my bitchy behavior.. Feel free to ignore me until the first day of sunny, 60 degree weather comes along 🙂

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Toothettes, Jigglers and Z-Vibes.. Oh My!

Today was day one of the TalkTools seminar that I attended on Long Island, Foundations in Feeding and Speech Clarity, Oral Placement Therapy. Well the day did not start out too well to say the least. First I woke up at 6:50 AM, registration was to start at 7:45 and the seminar started at 8:30 AM. In most other areas of the US, you could have simply hurried and still made it on time at least to the start of the class. WELL those of us that live in the New York Tri-State area would have probably thought that it would have been best to just go back to sleep! So I hurried the most I could and left most of the kid duties up to Hubby.. (sorry hon!)
Even with driving like a maniac, I still arrived an hour late.. I HATE Manhattan traffic!!! How is it possible I hit traffic on EVERY SINGLE imangineable road on my way to Uniondale! Yes it’s my fault for waking up late, but good Lord!

Anyway, I finally make it there and it turns out I wasn’t the latest one, but by the time I sat down one of the few seats left was the seat that usually no one wants: The seat right at the very front, right smack next to the presenter… Then I found out that I was the only person there as just a parent. Everyone else there were speech therapists. Nevertheless, I am so glad that I attended this seminar. I have learned so much about the mechanics of feeding and little things you can do to stimulate sound and proper chewing. When I went into the class I had little to no knowledge on all the different tools that can be utilized to help a child along; like toothettes, jigglers and z-vibes (come on! you know you want to say it! OH MY!).

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I was talking to our private speech therapist and she thought these could be great tools, but only when Eli allows us to get close enough to his mouth to use them on him. He tends to be very orally defensive and isn’t a big fan of dry foods going into his mouth let alone a big chewy tube! If we could get that defensiveness down then it would be a great technique to try. I want to see if I can pick up a starters kit of some sort to bring home. When I showed the video of Eli devouring down his pasta to the presenter she thought that it was great that he was eating and enjoying food, BUT he still is not chewing properly. He’s still suckling a portion of his food; which also explains why he hates crunchy food. That also ties into his speech issues with apraxia. The tongue movement that he lacks for moving food around his mouth also affects the types of sounds he makes.

Very interesting all in all, but it makes me wish that I had been more proactive years ago when I first realized that he was making no progress with his first speech therapist. I was just so happy that I found someone that didn’t make him cry that I never questioned her as to why she wasn’t using different techniques or why he was making virtually no progress at all in the areas of speech and feeding. She pretty much worked on trying to get him to say the B and M sound for 2 years, but in reality it would never really come until his feeding issues were addressed. It also explains why Eli tolerated her; because she never pushed him beyond his comfort level. Please don’t get me wrong. She was a great therapist, but I don’t think she knew how to handle Eli’s case. Anyway, after going to a different apraxia workshop I learned that is one of the red flags of a child with apraxia. The child will make little to no progress in speech therapy even after several months.
As they say hindsight is 20/20!

Tomorrow is the last day of the seminar where I will learn how to apply these techniques specifically to an apraxic child which was the main reason for my wanting to take this course. That portion will promptly start at 8:30 so I will now go to bed so that I can wake up at the butt crack ass of dawn to try to make it in time!!

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