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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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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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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8 Things to Remember as a Parent of a Child with Special Needs

I don’t think that very many people ever say when they wish to have a child with special needs. Most people just assume that everything will go perfectly, without a hitch.. Whether you realize it during your pregnancy, at the moment you give birth or with the slow realization of missed developmental milestones; I don’t think anything can fully prepare you for what to expect. If someone had told me 5 years ago all the trials and tribulations that we would go through I don’t think I would ever believe it….

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So here are 8 things I learned along my smooth, bumpy, hilly, mountainous journey:

1) Beware of the internet!!!! When you first walk out of Dr. (insert the name of your preferred pediatric doctor)’s with a diagnosis or when you first start to get a gut feeling that something is not right you will be tempted to research the internet till the wee hours of the morning. There is no doubt that the internet can be a useful tool and give you ideas on therapies/medicines. However, beware of information overload! It can also take you to the brink of insanity (ahem… me being a case in point) with conflicting advice that may not be applicable to your child. I am not saying to not use it; just be careful.

2) Keep clear and concise records of doctor’s reports, therapist evaluations, notes. I know the sheer of paperwork that you have compiled over the years is probably equivalent of the Redwood National Forest. My suggestion is to scan them on to your computer then make up a back up of that on a thumb drive for portable access or perhaps an external hard drive. Keep a yearly notebook with notes that you may take at meetings and phone calls with school districts.
As far as having all your paperwork in order for your IEP meeting I found My IEP ToolKit to be particularly helpful tool. This binder with specific tabs easily help parents get the mammoth stack of paperwork organized and whip out whatever obscure piece of paper the child study team asks you for at a moments notice.

3) If you are at the stage where you are dealing with school districts, then I am sure you have heard of horror stories of dealing with uncooperative school officials, etc. I even have some battle scars. Go into your meetings alert, informed and educated in your rights, but don’t start off your relationship on a combative note. Check out your state’s parent advocacy agency. I can tell you that the Statewide Parent Advocacy Network (SPAN) provided me wealth a knowledge for advocating for own child and taught me what my child’s rights were. If you can take training courses hosted by these types of organizations.

4) You are not alone. Yes you will feel alone many times during your journey. You may feel alienated from your family that is either in denial or that thinks that you are overreacting. Heck, your spouse may even be in denial and this can be the cause of many arguments. There other people out there going through the same things that you are going through.
My advice? Seek support groups in your community or blogs.Try to find other parents that are going through similar experiences as you are. If you feel that your relationship/marriage is suffering then try to find a therapist that has experience in dealing with relationships affected by special needs.

5) Don’t neglect your other relationships. Dealing with your child with special needs may monopolize a lot of your time, but don’t forget that your significant other or your other children still need you too. I don’t mean that you wouldn’t take care of your family’s basic needs, but REALLY try spend time with them. That was my biggest mistake when I first started going through all of this. Of course, I still loved my husband and daughter, but it’s almost like I put them on the back burner when I made Eli the little dictator of my universe and I paid for it dearly later. I know it’s easier said than done, but try to keep a date night as often as possible (without the kids!) and try to give other the kids undivided attention when possible. I try to go to all my Boogie’s extra-curricular activities.. I think it makes her happy when she can look over at me at any given time and see me there watching her swim or play soccer.

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6) It’s easy to forget yourself in the chaos of your daily life. Again, yes I know, easier said than done.. I know I am going to get some snorts of laughter here, but try to get away from it all for a little while. Take a walk somewhere, window shop, sit in a park, get a manicure, read a book without a kid tugging at proclaiming that they are starving. This is so very important!! If you don’t do this every once in a while, you can just end up burning out. Trust me it happened to me… One blubbering mass of crying mommy/daddy is no good to anyone!

7) Don’t beat yourself. Many times I blamed myself for everything happening…
“Maybe if I hadn’t skipped my prenatal vitamins when I was nauseous and couldn’t keep anything down?” or “Maybe if I hadn’t broken down and eaten that one California Roll that I was craving?”
Placing blame or torturing yourself is not healthy and is counter-productive. Just keep it moving!

8) Last, but not least love the child that is in front of you just like he or she is. At the risk of sounding too corny or kumbaya-ish, appreciate the little things. Yeah, your neighbor’s kid the same age as your 4 year old might be talking up a storm. So what your kid only speaks gibberish that only you can understand? That’s what makes it so much more delicious when you hear the words “Aaah ohhh oooh, Mam” (‘I love you Mom’ in Eli-ese)…

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The Candidates and The Issues (Pigs must be flying)

Usually I try to keep politics out of conversation since everyone is entitled to their own opinions..
However, with pictures of the GOP candidates plastered all over the news and their every word being analyzed, I can’t help to wonder what their views are on the disabled.
According to the The American Association of People with Disabilities (AAPD) there are 54 million Americans living in our nation with disabilities. That’s about 19% of the population. That’s a pretty significant part of the population!

Anyone that knows me well will tell you that I am a steadfast Democrat; I always have been. However, I must admit that I have my doubts that the President will get reelected. Nope! I won’t get into it as to why because I don’t want to get into a huge political debate. This post isn’t about criticizing anyone in particular. I am in the unique position that I no longer care what party affiliation the candidate has. At this point, my vote will go to whoever has the best ideas on education, the middle class and the disabled. (Wow I can’t believe I said that! Pigs must be flying!)

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Anyway, I decided to google it to see what I could find. I found the AAPD’s Presidential Candidate Questionaire. It lists many important questions relevant to the disabled for the candidates to answers involving employment, unemployment, technology, education, etc. I couldn’t find any answers to these questions yet so I kept looking and I found several videos on You Tube of Sam Wessels, a little boy with autism, asking each of the GOP candidate what their views are and what they would do for people like him.

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The most recent information that I could find on the President’s actions are from an article on the disabled and jobs. There was much more from when he was campaigning, but I thought that something more recent from after being elected was more fitting.

For easy perusing here are the links for the videos of each of the remaining major GOP candidates answers to Sam (Some were more adept at answering than others):

Mitt Romney

Rick Santorum

Ron Paul

Newt Gingrich

So what do you think? I hear the flapping wings of flying pigs at my window as I type that all this leaves me very unimpressed and my vote is still very much on the fence and up in the air…. With the pigs….

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