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.

All about the kids…

Today was pretty much all about the kids. (When isn’t it!? 🙂

Eli had his first day at school at the out of district school. After balling my eyes out from watching my baby boy hesitantly walk on to the new bus, with the new bus driver and new aide; I had to get my butt to work. After settling myself in, I called the school and I received a “so far so good” response that pacified me somewhat. Then at the end of the school day his therapist called and i almost fell off my chair when she told me her opinion of his first day.. She thought he did great!
When he got off of the bus and inside he cried for about 10 minutes which can actually be pretty normal for a 4 year old in a new school. Then he stood by the door for another 10 minutes with his coat and wool hat still on as he refused to take it off. My guess is that Eli was praying that this was a big joke and that mommy would come storming through the doors to rescue him. (Awwwww!!) Thankfully, his teacher knew better than to fight him on his first day and let him keep his coat on until he was comfortable enough (and hot enough) to take it off himself.
Besides those small bumps Eli was a rockstar! He engaged well with everyone, smiled, laughed, played and transitioned well to other activities. Eli went to gym class for the first time ever and after a little convincing he participated and had fun. He even went to music class… I am not sure what he did there, but hey that’s pretty cool! He had snack and lunch without much convincing..

All in all, not a bad first day at all! I am really proud of him! The teacher even ended her first note to me by saying that he is ‘adorable and such a sweet little boy.’ Yay!!! The little bit of cologne and gel that Hubby put in his hair helped 🙂 He looked so GQ with his grey and black v-neck sweater, blue jeans and black boots.YES I know, we are not beneath making our kid look ridiculously cute to help him win some points!

I am well aware of the ‘honeymoon’ period that some children go through when they go to a new school. In other words, some kids behave well their first few days since they are still unsure of their surroundings, but then become terrors once they feel at home. That could very well happen with Eli, but hey, I’ll take the good days anyway!

On another note, Boogie came to work with me today since Hubby worked a double shift last night and I didn’t think it would be wise to leave a 7 year old with a sleep-deprived comatose father.
(Shameless brag alert!) She makes me sooo proud. All my coworkers were shocked at how well she behaved. In other words she did not make any loud disruptions! She quietly played her Nintendo DS, watched movies on her portable DVD player (thank God for technology!) and colored while Mommy worked all day. All day from 9:15 to 5:30! Not bad huh? I was raised very much in a ‘children should be seen and not heard’ household. I am not as strict about it as my mom was, but I have tried to teach her to be respectful in situations like the ones she encountered today.

After work she ate McDonalds and then we headed to her swim class… We got there early so we waited in the bleachers as we waited for Boogie’s turn to swim. At one point I looked over at her and watched her as she patiently sat. I couldn’t stop looking at her and suddenly I realized why. It hit me like a ton of bricks. Boogie no longer has the baby face I was so accustomed to. I could see a faint glimpse of her as a young girl. It seemed to happen overnight. Here is what I saw….

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Then it was Boogie’s turn for her lesson. She did awesome! This is the first session where I did not detect any nervousness or insecurity about swimming.

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Overall the minis had a wonderful day on this Martin Luther King Day… My dream of seeing my children be happy and well rounded children was accomplished; at least for today.

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Gratitude…

There are days that my children drive me to drink… When I longingly look at my passport and dream of running away to a sun soaked beach that has a big sign that says, “NO KIDS ALLOWED!” Even if it would only be for a day…

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Ok so that isn’t exactly realistic, but I would settle with for being able to go to the bathroom without an audience or just to read a book in peace for an hour…. I look at my best friend from high school (no kids yet). She talks about all the exotic places that she has travelled to and all the wonderful experiences she has encountered as she lives abroad…. I think to myself…”Wow… what I would do to live life that carefree again!” No screaming kids, no worries, no IEP’s or major stress for that matter. Sigh, it does sound kind of nice, doesn’t it? I usually feel that way after a particularly trying day at work or maybe after talking to Eli’s teacher about how he pushed a little girl to ground because he grabbed her toy, or after paying the bills.

Before I become a pitiful mass of snotty tears, I stop what I am doing and look at this picture:

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My mom had snapped the picture as she babysat for me one night while I went out with my aunt and cousin. The minis had a fun filled day touring Charleston during one of the hottest summers on record. Still, they were sad that Mommy wasn’t there to put them to bed so they just passed out while they tried to wait for me and watched cartoons. When I came back from my evening out my mom showed me this picture and it literally made my heart swell with love and gratitude.

I realized that I made these beautiful, perfect little creatures. I carried them for 9 months and besides Hubby no one else knows them as well as I do. They love me when I am happy Mommy and sad Mommy.. When I laugh and when I yell… When I look hideous and when I am done up and ready to go to work. After a long day at work they come running to me to strangle me with bear hugs and cover my face with kisses. They are love in its most perfect form. They are mine and I love them fiercely.

After I stared at this picture the first time I saw it, I forgot about the palm trees and quietly snuggled up next to them, falling asleep and holding their hands….

Running Boogie ragged?

While I run around desperately trying to get services, out of district placement, coordinating therapies (work has to fit somewhere in there too), Boogie sits patiently waiting for Mommy to be done with her rants so that she can get some time playing “Beauty Salon” with her.
I have always tried to do my best to split my timely equally and fairly between both kids, but despite my best efforts, I feel that Boogie gets the craptastic end of the stick.

Eli, for example, has never been the type of kid to throw a temper tantrum in a store so that he can get the toy that he wants. On the contrary, he always sat quietly while we put toy after toy in front of him hoping that we would get a shriek of glee out of him. His lack of words often leaves us guessing with something as simple as picking a toy out for him. That would explain the mound of unplayed, practically new toys that we get often from well meaning friends and family. Sorry I wish Eli liked blocks or crayons or legos! Anyway, the other day while the kids and I were in the clearance section of Target the other day I grabbed a heavily discounted Thomas the Train track set and put it in front of Eli. Much to my surprise, he FINALLY let out that shriek of glee that I had been so eagerly anticipating and he grabbed the box away from me and hugged it to his chest! I was so happy when we got home and he thrust the box into my lap so that I could open it. To watch him say, “Ooooh, oooooh!” (Choo, choo!) as he pushed the miniature Thomas around the tracks brought tears of joy to my eyes. In my typical overzealous Mommy style, I went on the mad hunt for every Thomas the Train Take and Play set I could find on Craigs List.
I drove all around Jersey picking up bits and pieces of sets so Eli could have large track to play with.

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The whole time Boogie was a good sport and helped her little brother set up tracks and push the trains around. Don’t get me wrong Santa had been VERY VERY kind to her for Christmas and her birthday which had only been two weeks before Christmas. I just couldn’t shake the feeling of guilt as I brought train after train for Eli with excitement while I never display that much excitement over buying a Barbie.

Wracked with the feeling of being a horrible parent the overzealous Mommy came out in force. On Christmas Day, I decided to keep Boogie busy with every extracurricular activity her little heart wished. She is after all, a really great kid. Putting to the side her occasional bratty moments, Boogie is patient and loving with her little brother. She always helps look after him and has become a third parent of sorts whenever I need help. So besides the mandatory Sunday catechism classes, I proceeded to sign her up for cheerleading, gym class, swim class, Spanish classes and Girl Scouts. That’s not even including summer camp, soccer and music lessons that are coming up later in the year. In addition to that I decided to make up for all the missed time with her and take her to a Mommy/Daughter make over, the movies, lunch… I must say though, she really seems to love keeping busy and having some undivided Mommy time all to herself. So even if it means Mommy running on empty, just the smile on Boogie’s face helps me forget the exhaustion.

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This sibling stuff is particularly tough for me to figure put since I am an only child. I was the lone kiddie ruler of my house as a child so my never had to concern themselves with splitting time equally. Let alone splitting their time with a child that has special needs.
Add that to having another child that is typically developing and it get interesting. In my opinion it’s all about having checks and balances. Making sure the stones in the balance are as equal as possible..

My biggest fear is that one day Boogie will turn into the ugly teenager and say “You always gave him more attention than me” or “You loved him more than me!”
Thus my over compensatory behavior with her. I am sure that somewhere a therapist out there is shaking their head and predicting the demise of my family. Definitely I am NOT claiming to know the answers to this issue, but I am handling it the best way that I know how to. By loving my children and spending as much quality time possible with them.

So if anyone out there has amy ideas on how to handle a situation like this then I will GLADLY be all ears! 🙂

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