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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Tentative Success!!

Today was Eli’s third day of school and I must say that I am tentatively thrilled!!
So far so good! He seems to be happy when he gets off the bus at school and he promptly takes his coat off to hang it up (as opposed to his first day!). According to his teacher, he interacts well with his peers and teachers. They all love his endless dimples 🙂

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He tried to pull his usual non-compliant act with his speech therapist, but she was not fazed. She PROACTIVELY called me (I love her already) to tell me that he is a stubborn little guy, but that she doesn’t give in and plans on working towards using the PROMPT method with him when he gains more rapport with him.

Yesterday he had gym and computer class, today he had career day where a firefighter came with a fire engine to talk to the kids, and tomorrow he has music class. Just the thought of Eli being exposed to so many different activities makes me so very happy. This is my dream come true for him; what I had always envisioned for him. It makes me want to do the Snoopy Happy Dance! I am aware that everyday won’t be peachy and that he will have bad days, but for now I am relishing the good days. One day at a time….

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I am now preparing for a crazy next two days!! I took two vacation days for tomorrow and Friday to attend the Talk Tools seminar on feeding and speech clarity on Long Island. Hopefully this will give me some new ideas on how to help Eli on my own with his apraxia and feeding issues. Ugh.. But I have class back in Jersey on both days so I will have to race out of the seminars on both days to battle traffic and hopefully make it back in time for both classes. I was born and raised on Long Island and I LOVE going back, but I HATE the traffic. It’s ridiculous! I think the Long Island Expressway has been under construction for as long as I can remember!
It would have been great to see my grandparents and other family, but I really won’t have the time.
Bummer 😦 Once things get back to normal I really have to get my act together and see them!

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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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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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Incomprehensible….

There are few times where I am truly, truly shocked and disgusted by humanity. Doctor’s that feel that they have right to play God and choose who has the right to live and who doesn’t. Better yet they feel they know who DESERVES and is WORTHY to live.

I can only understand the frustration and helplessness that little Amelia’s parents must feel.
God help the doctor that would ever THINK of saying that my son is not WORTHY to be saved with an organ transplant because he is developmentally delayed. I am just so angry at how this hospital and their representatives can be so heartless and cruel…

Today is one of those days that I wonder what the hell is going on with this world… I hope that Children’s Hospital of Philadelphia will renew my faith in the goodness of the medical profession and do the right thing; help this little girl live. They have no right to play God….

In the meantime, we can help by signing this petition

We can still make a difference.

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