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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!!! ūüėČ

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 ūüôā

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. ūüôā

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Random thoughts….

This is my first week back at school since before my son was born…. At some points I felt exhilarated to be back and other times I felt utterly bewildered:
1) I am all for the students being unique, BUT why must they feel the need to antagonize the Professor on the first day of class? If you feel that you are so much more superior than everyone else then why the hell did you choose to go to community college. I am NOT saying the Professor is God at all, but I do not see the need to interrupt her every 5 minutes to give your counter point. Yes this kid was one of THOSE…. Humph.

2) Why is there no financial aid or scholarships out there for working parents? I scoured the internet and there was close to nothing. Unless you get a student loan you have to be practically impoverished to get any type of grant. I am not on the poverty level, nor am I looking for a free ride, but I sure could use some financial aid! At least to pay for textbooks!

3) Textbooks!!! Good Lord!!! I forgot how expensive they are!! With all the technology out there in 2012 why aren’t more of these books digitalized? Can you imagine all the trees that get killed with these books that are outdated even after 1 or 2?? You can’t even use those outdated textbooks. I saw many classmates show the Professor a textbook outdated by 1 edition and get told to try t o return it since they would not allow that book to be used.

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On another note: Eli starts his first day of school tomorrow…. And he has a runny nose and watery eyes that I have a feeling will turn into a cold. Normally this wouldn’t be a big deal.

Sniffly Eli + 1st day in a new school (new bus, building, routine, therapists) = Miserable, cranky, non-compliant Eli

Sigh.. Way to start his first day.. I hope he will surprise me and be a superstar, but I am not holding my breath. His bag is all packed and I already wrote his new teacher a note advising her of his strengths and weaknesses plus a letter I found on CASANA website. This letter is helpful in giving teacher’s a crash course in apraxia (all in two pages!).
Yes she probably thinks I am the psycho parent already, but I would rather be known as the psycho parent then be walked all over!

I will consider it a success if I don’t end my first phone conversation with his teacher in tears! It’s tough to let my little guy out into the unknown.. Anyway, wish us luck!

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Back to school

Tonight was my first college class since before Elias was born. I must be out of the swing of things because after a mere hour and a half my head was already pounding. Working all day I am sure had something to do with it, but wow.. I definitely don’t have the energy that I used to have!

I would love nothing more to just crawl into bed, but I have homework that is due tomorrow by 5 pm. Just typing that made me yawn!

Tomorrow after work I have Economics 101 for 3 hours.. Yikes! I must admit however, no matter how tired I am, I feel ready to do this.. I am determined this time! Being the oldest student in my class is motivating me even more!

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Old as &^%(

Nightclub Doorman in movie Knocked Up:…. I can’t let you in cause you’re old as *&^%. For this club, you know, not for the earth…..

I had forgotten how chaotic college registration could be…. First I walked into the cafeteria of the school since that was where the letter I had received instructed me to go. That room had trendy club music playing in the background and tables filled with enthusiastic, bright-eyed, bushy tailed students waiting for the presentation to start. Several student advisors were available to assist with registration. All this made me wonder why I had waited so long to get back to school! Just look at how excited everyone is!
With that thought I got on line and patiently waited for my turn to give my name to the lady with the enormous roster list. She flipped through all the pages looking for my name to no avail when she looked up and carefully analyzed my face. Suddenly it appeared that the light bulb went off in her brain!
“Oh I’m sorry! This registration is only for those students under the age of 25. YOU have to go to the line down the hall for the adult continuing students!”
WELL if I didn’t feel old before I sure as hell felt old as ^&%$ at that moment! Hmmmm… I wonder what gave me away? The kiddie stickers on my coat or the bags under my eyes? I couldn’t help but chuckle as I walked down the hall way to my ‘elderly’ counterparts…
That room was quite different. Dimly lit and cramped the room had only 5 chairs, one overwhelmed advisor and a room full of miserable adults. Several women had cranky toddlers in tow while everyone else either napped or played words with friends. Resigned to my fate of being labelled as “old as &^$*” I stood in the doorway for my turn to be registered.

Two hours later after pouring over the course listing to find classes that wouldn’t interfere with my Apraxia 101 classes, Boogie’s swim class, Boogie’s cheerleading or work I finally settled on 3 courses this semester. The first step in the journey of my dream of becoming a social worker.

I may not be 18, but I think returning to school at the age 33 has made me more aware of just how important an education really is. I am, however, just as eager to fulfill my goals as that room full of 18 year olds and maybe even more hopeful to make a difference….

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Success!!!!!

Success!!!! Eli survived the intake evaluation and the evaluators did not leave the room running! ūüôā
Seriously, Eli did way better than I thought that he would. Thank God! There were some tears of course, but nothing that wouldn’t be typical of what any other 4 year old would do in an unfamiliar place and environment. The pleasant surprise that I wished for yesterday came true today.. Besides a little bit of tears, he was quite charming and showed his playful side as the school administrators admired all of Eli’s dimples. He can be quite charming when he wants to be!

As far as the evaluations were concerned, the observations they made were quite in line with what I expected they would find. The ST thought that he wasn’t as engaged as they would have liked him to have been, but this is quite typical for Eli when he feels uncomfortable in a new place. Even our school district case worker told them that he would take a couple of weeks to adjust.
They also found that he appears to have some low upper body tone and clumsy gross motor movements, especially when climbing stairs. This also was no big surprise to me since Eli almost toddles at times which isn’t quite age appropriate for a 4 year old. Very typical of a child with dyspraxia though. So they suggested that the school district also perform a physical therapy evaluation so that they would be able to provide those services too.

Overall it was a positive visit and the best outcome is that Eli can start the new school on January 16th! I truly believe and have faith that this is the beginning of many good things for Eli. It is my hope that he will blossom and thrive with the right amount of therapy and attention. My only fear is that there will be may be some regression since he will probably be quite obstinate and resistant to his new teachers in typical Elias style; He’ll push every button he can!
A close second to Eli starting on the 16th is that I will no longer be paying for daycare…. Yayyyyyyyyyy!!! Woo hoo momma can now pay some bills on time! ūüėČ

So now that Eli is finally getting settled with a good program, Mommy can now get her ass back to school..
Tomorrow on the agenda: Mommy is registering for college!

P.S. Thank you St. Jude.

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Let the madness begin!

So here we are.. day 2 of 2012… As I sit here in my kitchen staring at my sink full of dirty dishes and the folded clothes fresh from the laundromat patiently waiting to be put away I begin to feel that familiar feeling panic slowly washing over me as I anticipate the madness that waits for me this week.

For starters I go back to work after being off for a week and a half.. Yeah I know.. “Awww.. Poor baby!”
Yes I know I shouldn’t worry about things that haven’t happened yet, but this is my nature.. My achilles heel of sorts.. I worry about money, my kids, my husband, the cat, my coworkers, the world, the universe… You name it!
This week though, I think is justified.
Eli has his intake assessment at the out of district school we have been advocating so hard for him to get considered for. What’s the big deal you ask? Well Eli is renown at every doctor’s office, clinic, and school that we have taken him to for being demonic during his evaluations. Trust me, demonic is an understatement. It’s as is he has a little internal radar that alerts him when there will be more than one person in a room (excluding mom and dad) that will be determined to make him jump through hoops and do tasks that he has no interest in performing. I can’t say I blame him though. Eli has been consistently poked, prodded and analyzed since he was about 8 months old.
I’ll try to keep this story as short and simple as humanly possible. When little man was born I noticed that something was not quite right when I watched the hospital picture lady trying to his body to cooperate for the little bassinet picture.. You know the one? The picture that gets taken a few hours after they are born and they look swollen, cranky and red. Anyway she kept trying to get him to look at the camera, but he kept stubbornly looking to the right. Shot after shot she would tilt his face and rush to take the shot before he moved it again. After literally 10-15 failed shots she got this pic.

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Worry started to well up inside of me as each failed shot was taken. Why wasn’t he looking at the camera like all of other babies before us had? Like his older sister had 3 years before him? Why was his right arm kind of limply hanging there? I looked over at Hubby and whispered to him, “Hon is this normal? Boogie didn’t do anything like this? Why is his left arm just hanging there?”
Hubby, always the voice of reason to me when it came to my worrying said, “Babe, all babies are born looking and acting weird… They are still getting used to their environment.”
With that I let it go. After all wouldn’t the hospital have told me if something was wrong?

Fast forward to Eli at 7 months old. Aside from thinking that he was a really cranky baby and that he had an unexplained hatred of tummy time I didn’t think anything was out of the ordinary about him. Whenever I did feel a twinge of concern it was immediately hushed by a family member telling me about some cousin that I had never heard of before and how they were weird and cranky when they were babies. Here is my cranky baby boy..

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However, when I noticed that Eli was only using his left hand to play and that he was still having a lot of trouble rolling over, sitting up, etc etc .. I decided to take matters in my own hands and go to a neurologist and call early intervention. After the endless battery of tests it was determined that nothing was wrong with his brain, nor did he have fragile x and all the other stuff they tested for.
She did notice a bit of a weakness on one side of his body though and attributed it to his fetal position when he was born. Early intervention and the neurologist diagnosed the term that I would come to dread with a passion: Global Developmental Delays. Basically your kid is not typically developing in anything and we have no idea what could be the cause of it. Eli started off at 8 months old with speech therapy, developmental intervention and occupational therapy. I wish that was the end of the story, but not quite. He hated most of his therapist and would just cry for the whole hour. That is when the second dreaded term came: Sensory issues (autism?)
It didn’t help matters that he wouldn’t answer to his name and that he liked to sit in his exersaucer and spin the stupid spinning apple! That was around the same time that I started feel myself sink deeper and deeper into depression.

I became completely absorbed with fighting for more services, new therapists, better doctors. However, something that I am ashamed to admit started happening… I started to feel resentful to Eli. I always made sure his basic needs were met and that he got all the treatments he needed, but I couldn’t bare to play with him or hold him and hug him.. God bless Hubby for dealing with me then. He took over in the love and nurturing department for Eli. He always would insist to me that nothing was wrong with Eli. That he was perfect. I would just shake my head and keep plugging away at finding answers. Now I realize that Hubby was right.. Eli is perfect just the way he is. It’s just the world around him that is imperfect. That realization, however, did not come until 2 years down the road.

To speed this story along… Eli agreed to be merciful to a group of wonderful ladies that would be his therapists until he turned three and transitioned out of EI. With their help and tubes in his ears at 15 months (It turns out that he had excess fluid in his ears preventing him from hearing people and equilibrium) little man very slowly but surely started progressing.
Here’s the condensed rundown of his milestones..
8 months: Sitting up unassisted
11 months: Crawling (with hands closed into fists due to sensory issues with carpets)
15 months: Bilateral tubes so he began answering to his name. Eye contact improved.
16 months: Walking
Socially and physically, much to my relief Eli started catching up in leaps and bounds.

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Feeding and speech stubbornly refused to progress however. He was still eating jarred baby food at 3 and a half and to me that was not acceptable. Three months before his 4th birthday he went to St. Joseph’s Feeding and Swallowing Clinic and that did the trick. After many agonizing, infuriating, tearful sessions Eli now eats almost anything. We still have issues with some finger foods, but we’ll get there! Eating solid foods and utilizing his oral muscles more enabled him to start babbling and approximating more. While there I took him to a wonderful developmental pediatrician that told me what we knew all along. Eli is not on the spectrum, but does have severe dyspraxia. With the intensive therapy his prognosis can be very good. He will have this monster forever invading his body, but if he is taught to combat his frustrations he can do well in life. When we took him to the speech therapist for a more intensive post-EI eval she found apraxia with mixed expressive/receptive language disorder.

So here we are 2012 and we now have a name for this pain in the ass that invades my son’s body. Apraxia…The monster that causes him such anguish when he tries desperately to get his point across to no avail. Apraxia has kept my son from telling me, “I love you Mommy” clearly. However, it has given my son determination that I have yet to see in other kids his age. I can see that when he grasps and says, “Ahh ohhh oooh Mam.” (Hearing that brought one tears to my eyes ūüôā

Apraxia may be here to stay in Eli, but it will NEVER win. Yes, Eli may always struggle with different things, but I have hope that he can lead a happy, productive life. The first step on my list is getting him into this full day, inclusion out of district school. A place that will have the time to work with him on his speech and his frustrations. Apraxia also pissed Mommy off enough that I have decided to go back to college and pursue a degree in social work. I have seen so much injustice, but have been taught so much by the other warrior parents out there that I want to make a difference. So Mommy goes to college orientation this week and starts 4 classes next week.. Oh boy.. Here we go…

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