RAISING JOEY

Spread The Word!!

Please post this today and help to raise awareness how much the word “retard” can hurt!

Take your own person pledge to help end the r-word!

PPT #2…

We already needed to request another PPT meeting. We got Joey’s IEP last week and after reading over it, I realized that Joey is being pulled out of the regular classroom and into the resource room and the self contained classrooms more than what we said during his PPT on March 9.

This really upsets me. We are HUGE believers in inclusion and want him with ALL students as much as possible. We agreed to him being pulled out of the class for 20% of the day and according to his IEP, he’s being pulled out for 80%!!! And when his classroom sites are listed on his IEP, NONE of them are listed as regular classroom. Only self-contained classrooms and resource rooms are listed. Sooooooo, PPT #2 next Wednesday, here we come!

Not to mention, the state law, according to PJ class action lawsuit, it states that students can only be pulled out for 20% of the day.

Annual appointment with Dr. Bob

Yesterday I took Joey to his annual appointment with Dr. Bob, his genetist. We absolutely LOVE Dr. Bob!

I filled him in on Joey’s new diagnosis of being on the autism spectrum. He thinks otherwise… he actually thinks that Joey is OCD (obsessive complesive disorder) and his new crazy behaviors are caused from mental trauma from his surgery back in November.

Joey’s behavior has changed since then and I never really put two and two together. Joey’s speech & sign language has regressed along with his new “bad” behaviors. Dr. Bob compared it to almost like a “post tramatic stress” from the surgery.

THIS MAKES PERFECT SENSE!

Joey was so crazy during the appointment: screaming, throwing himself onto the floor, all the new things he’s been doing.

Anyways, I’m making an appointment with a specialist regarding the autism/ OCD to get another opinion.

Back to the appointment, Joey’s weight is a little under for his height on the DS growth charts so hopefully we can get a few extra pounds on him!

He also agreed with Joey’s GI about the endoscopy, colonscopy and biopsy to hopefully figure out Joey’s tummy issuses.

Ok, well I think that’s it for now! I’ll try to post again later this morning!

The CDSC is on Facebook!

To all of my Connecticut readers who are interested & have Facebook accounts, there is now a CDSC Facebook page that is growing everyday! It’ll be updated regularly with new events and information about the CDSC!

The CDSC’s Facebook page!

We have a date…

Joey’s GI office just called with a date for the colonoscopy, endoscopy and biopsy, Thursday, April 23. I really thought we were past the chance for Celiac last year after the blood work came back negative but his GI doc is thinking otherwise.

When he had his tummy surgery back in November when they repaired the intestinal malrotation, they didn’t take a biopsy since the areas they were fixing were considered “diseased” and no good.

Part of me hopes they find something wrong with him besides Celiac that they can fix so we don’t have to deal with a Glutein free diet. I dunno…

I just want an answer to why my child never has any “solid” poops and is always blowing out diapers. It’s really taking a toll on me mentally and physically.

Changing Joey’s diapers when he’s done a #2 has become a fight. He screams, flips himself over and in the process usually makes a mess all over himself and sometimes me. I’m just sick of it…

Can’t catch a break….

Joey woke up from his nap yesterday afternoon very grumpy and just not himself. Figures… he had a 101 fever! So, he has his first sick day home from school today. I’m just hoping it was a fever that doesn’t have an illness following it. We all just got better from that awful cold…

Sibling love

I decided to pick up Joey from school today since Leah and I were out and about running errands. Leah and I arrived at school and went inside to wait for Joey. His teacher saw me and came out to tell me how good he’s been doing and how much he seems to love school while his speech therapist was finishing up with Joey.

When she finished she brought him out into the hallway. It was probley the cutest thing ever when Leah saw Joey… she let out the cutest/ biggest squeel I’ve ever heard and went running up to him with excitment! It was soooo sweet!

I’ve been feeling so bad for Leah, she’s really having a hard time adjusting to Joey being at school. She has huge separation anxiety from him. Even in the mornings when we’re waiting up at the bus stop, she’s crying. I really hope she adjusts soon…

And if you get a minute, stop by my friend, Cecily’s new blog, 4 Corey and say hi!

Well…

Joey’s GI doc just called me back. She suggested Joey goes in for an endoscopy and colonoscopy. Joey was screened last year through blood work for celiac but she’s wondering if maybe it was too soon and didn’t show up then. Sooooo, her secretary will be calling me in the next day or so to schedule the 2 scopes together.

Hopefully we’ll get an answer of somesort. I’ll go nutty if I have to deal with Joey blowing out diapers forever…

Peeeeeeeee-uuuuuuuuuuu!

That’s all I gotta say about Joey & his poopy at the moment. After his surgery, his BM’s never got better like we were hoping they would. The blow-outs lessened but are back and stinker than ever.

At the moment, I am actually airing out the house with the windows open. Need I say more?!

I called Joey’s GI doc and left a message for her to call me back. Hopefully she’ll call me back with some new ideas….

Sorry for the yucky post, but ya know, poo happens!

This week…

It’s so weird not having a calendar full of birth to three therapy appointments for Joey. I have FOUR LESS appointments a week now that Joey is in school. It’s odd not having therapists here at the house. The house kinda feels empty now, LOL!

But now my mornings are full of getting Joey fed, dressed and out the door in time for the bus. Along with getting Joey dressed, I have to get Leah and myself ready too since we have to walk up to the bus stop and wait.

Anyways, this week I have an OB checkup to see how Baby Bean is doing and then on Thursday Joey has his yearly visit with Dr. Bob, his genetist, who we love dearly! It’s going to be a bittersweet appointment knowing that Dr. Bob is retiring in July so this will be our last appointment with him. At least I will still have contact with him since he’s on the CDSC’s board and helps me with The Holland Committee.

I forgot to update about Joey’s eye doctor appointment on Friday. Thankfully he still doesn’t need glasses but is getting close. He still has the astigmatism but we can still get away with him not having glasses. He was SO BAD during the appointment, he screamed and wouldn’t hold still. I have no clue how the doctor even got a good look in his eyes.

Well, I guess I better pack Leah up in the van and head out to run a couple errands while Joey is at school!

video to share!

I’ve been meaning to share this one…

What a week!

Geez, so I’m a bad blogger. I completely didn’t get a chance to post about my opinion of President Obama’s remark about his bowling score compared to the Special Olympics and World Day Syndrome Day.

Well, I just have one thing to say to Mr. Obama, “SHAME ON YOU!” Doesn’t he realize that MANY if not most of the people who compete in the Special Olympics who bowl, get better scores than so called typical people?! I know they’d all score better than me!

People who make comments like what he did completely and totally sicken me. People talk like that are typically the ones who talk like that on a regular basis. What a great example for him to set for his OWN children.

If you missed his comment, see below…

Ok, next subject…

Happy belated World Down Syndrome Day!!

This year, March 21 marked the 50th anniversary of when Professor Jerome Lejeune’s discovery of the extra copy of chromosome 21 which causes Down Syndrome, otherwise known as Trisomy 21, hense being celebrated on 3/21!!

With that I will end with this…

1st week of school

Since Joey has an eye doctor appointment tomorrow, he won’t be going to school so today was his Friday. I can’t believe how good he did! The only problem that he’s causing is he’s refusing to eat at snack time for his speech therapist. Hopefully he won’t keep this up too much longer!

Joey LOVES riding on the bus. I think it’s his favorite part of the day, LOL! Apparently every morning when they go to take him off the bus, he starts crying because he wants to stay on! And he gets so excited when he sees it pull up to pick him up!

But poor Leah, she’s so lost without Joey in the morning. She’s been so cranky without her big brother. I’ve been taking her out everyday just to keep her occupied. Hopefully she’ll adjust soon…

First day of school!

Today was Joey’s first day of school. I can’t believe we’re done with home visits from birth to three! No more therapists here at the house! Now I have to get him up, fed and dressed and out of the door by 8:30 five days a week!

His teacher called me a couple hours ago to let me know he did great at school. The only problem was that he refused to eat lunch for them, which I figured would happen. He would barely ever eat in front of his therapists either so that’s something they will be working on in school.

Anyways, we got Joey out of the door and to the bus stop just in time for the bus to pick him up and off he went. We decided it was best for him to take the bus on the first day so he would get started on his routine right away. He’s such a creature of habit that it’s something that needed to be started right away. PLUS, he gets separation anxiety from me, so I knew dropping him off at school would be stressful on him AND me!

And here are the pictures from this morning!!

3rd Birthday Pictures!

We had a blast during Joey’s birthday party! Several of our family members and close friends came over to celebrate Joey’s 3rd birthday on Saturday. I still can’t believe my baby boy is 3 years old now!

Happy birthday Joey!

Of course, I had to sneak in a picture of Leah!

Joey’s best buddy Dillon came over for Joey’s party, but he was a little tired.

“Ma! A Mr. Potato Head!”

Joey with his 2 aunties, M&M!!

“Ma, I don’t want a picture with you!”

“BALLOONS!”

“Ok, this hat is embarrassing!”

Happy 3rd Birthday Joey!!!

I cannot believe my baby is 3 years old today! Time flies!

Joey’s first PPT

We just got home from Joey’s first PPT and boy is my brain fried, LOL! Thankfully a dear friend of ours who also has a child with Down syndrome came along with us for moral support and advice.

The PPT itself seemed to go very well, we had to push to keep less time in pull out therapies rather than in the classroom. Inclusion is VERY important to us, not to mention, THE LAW, so he will be pulled out of the classroom for 20% of the day which is the state’s maximum.

We also asked for Joey to have a one on one paraprofessional. He is a flight risk and won’t sit still unless he has someone right next to him, so thankfully they agreed to that one! We also asked for a daily communication log so we can keep up with what is going on during his day.

He will be starting school on Monday, March 16 and will be going 5 days a week in the mornings. I can’t believe it, my baby is starting school!!!!

The other thing we noticed was that some of his teacher’s weren’t using People First Language, so I will be making copies of Kathie Snow’s People First Language article.

I’d post more details, but I need a nap, LOL!

Mama!!!

For the past few weeks, Leah has had a HUGE surge of new sounds. Still no actual words, but she’s soooo close. My favorite of these new “words” has been “mama”. I’ve waited so long to hear that word from either of my children and now I’ve finally heard it!

As happy and proud I was/am to hear “mama” from Leah, I still long to hear it from Joey. It’s almost bittersweet that my youngest child says more than my oldest.

I’m praying/ hoping that when Joey starts school in a few weeks that his spoken language will improve….

Speaking of school, can you believe his PPT is next Monday?!?!?! Sigh… my baby is growing up!!!

Beverly Beckham does it again!!

Smiles, songs for a granddaughter who is just right
By Beverly Beckham
March 1, 2009

Five hours in a car. It’s a long time for a 5-year-old to be confined. But Lucy never complained. Not a tear. Not a tantrum. Not even a pout.

My granddaughter was happy, listening to Rodgers and Hammerstein’s “Cinderella,” and singing along. She ate chicken fingers in a nice restaurant overlooking the water, then she was back in her car seat, singing again.

She and her mother and I were on our way home from New York City. We had taken her to see her 19-month-old cousin. We had been to parks and museums, bookstores, and toy stores. We had walked and shopped and eaten and played.

I was thinking about this, about what a great kid she is, when I walked into my house and read the cover of the Boston Globe Magazine, which had come while I was away: “Pregnancy and Down syndrome; the agonizing decisions.” Lucy has Down syndrome, so I sat and read it.

I wish I hadn’t. Its negativity made me question reality. Did I invent this perfect week with my grandchild? Lucy’s smiles and her songs. Lucy reading books and running through Central Park, raising her glass of milk and saying “cheers.” Lucy remembering to say “please” and “thank you” to every person who held a door or brought her food or handed her a ticket.

The article was about two families who were told that their unborn babies had a 1-in-6 chance of being born with Down syndrome. One couple continued the pregnancy, the other aborted. As background, the author, Dr. Adam Wolfberg, wrote that Down syndrome “results in mental retardation and often a host of medical problems.” That prospective parents use early prenatal testing to identify a baby with the syndrome “so that they can prepare to raise a child who will have profound medical, cognitive, and behavioral challenges.” And that a determination of Down syndrome is “like a lottery no one wants to win.”

The words Wolfberg chose to use stung not just because they make sweeping generalizations. But because, before Lucy, I would have believed them.

You see things one way when you’re on the outside looking in. But when you’re on the inside looking out? All you see is a child.

Our family had hoped for a baby without extra challenges. Doesn’t everyone? When Lucy was born, she wasn’t healthy. She had holes in her heart. She needed surgery. And she had Down syndrome.

Negative words decimated us. You play them over and over in your head and you worry and watch and wait. And you miss so much that is good because you are a wreck anticipating disaster.

And then you stop worrying. You stop projecting and imagining and you look at this child in your arms, whom the world deems inferior, and you think how wrong the world is. And how perfectly right she is.

Lucy listens as Julie Andrews sings. Then she belts out in her raspy child’s voice what is true for Cinderella but even truer for all children like her. “Impossible things are happening every day.”

Beverly Beckham can be reached at bevbeckham@aol.com.