Tuesday, August 30, 2011

First Day of School for Little Man

Little Man's first day of school was delayed by Hurricane Irene, so today was his first day.  I was so happy I met with his teachers last week to touch base with them about his diagnoses and therapies.  They were extremely accommodating and put my mind at ease.  Of course, this didn't stop me from being emotional and sad today.  Last night I wrote up all of his words/approximations and he has 27! not including 7 names.  Back at his appointment at the big hospital in the city, he only had 7 and one name.  So he tripled his "words" in roughly 8 weeks!!!! (I put "words" in quotes because they are approximations and you have to know him very well to understand what he's trying to say - tripling his "words" doesn't mean he is "fixed" - it just means he has been working very hard to make some of the sounds or parts of words.)

Something I was not expecting - this morning we got into the car and the first thing he did was point to the house and say, "Bee-bee?"  He must have been wondering where his big sister was and why she wasn't going to school with him.  They were in separate areas last year and saw each other periodically throughout the day, but he's really attached to her.  It will be interesting to see how he does as the year carries on.

Drop off was a little hairy - all the teachers coming in to drop their kids off the first day and drop off all of their kids things - diapers, wipes, meds, ketchup (Little Man's favorite food group), bed rolls, extra clothes - it makes for a little confusing drop off.  Thankfully tomorrow it will just be the lunch box. :)  He went right over and played with the cars and saw his friends.  His friend A came right over and said, "How r ya?"  Just melted my heart a little to see him reach out to Little Man.  I slowly made my way to the door and he looked back and he cried a little.  Thankfully his teacher swooped him up and I made my way out the door.  By the time I drove out of the parking lot, he was back playing with his friends.

According to his teachers he had a great day!  He decorated his folder, played with his friends, he hung close by the teachers when they were outside - but he still had fun, he ate and napped and had a huge hug for me when I picked him up.  He must be still excited from his day, as he has been in bed since 7:30pm and now at 9:30pm he is still in his room wide awake...

Here are a few pictures of his day today:

Not sure of this...

Putting Stickers on the Folder

This isn't so bad...

Playing cars with A :)

Let's hope Bee-bee's 1st day of Kindergarten goes just as well! :)

The Last Weeks of Summer

We've been busy with summer winding down...I figured I'd post some pics of what we've been up to...

Wednesday, August 24, 2011

The Last IFSP and School Referral

This week is a busy week for Little Man - he met his new SLP on Saturday and Monday and really warmed up to her quickly, which is very unlike him - but I'll take it! :)  Hubby and I made the decision that we really wanted an outside person to work with him and be a constant this year as we transition from Early Intervention to the Public Schools.  Thankfully, our insurance covers unlimited speech visits with his diagnosis, however we still have to pay copays and a $10 convenience fee for Saturday visits.

Yesterday, EI came out to do their last 6 month evaluation and he showed progress in every area!  His cognitive skills continue to be his absolute strength, remaining 6 months ahead of his age. :)  The majority of his scores were at or above his age level, with the exception of Expressive Language (18 months - up from 14!) and Self Care (28 months - because he's not potty trained...um, have you seen a 2 1/2 year old boy with speech issues potty trained by now?  Yeah, I didn't think so).  This still qualifies him for EI services until his 3rd birthday.  I was pretty surprised to see that CAS and SPD are not automatic qualifying factors for EI, but thankful (?) that his low expressive language score still qualifies him.

Today we met with EI again and wrote his last IFSP (Individual Family Service Plan) and made the referral to the Public Schools for Special Education.  SCARY! 

Here are the goals we wrote for EI (or close to what we wrote):
  • He will increase his vocabulary and begin to put two word utterances together.
  • He will increase his means for communicating his needs and wants using either spoken language, signs, or communication devices - including using appropriate eye contact.
  • He will continue to make progress socially by developing strategies for communicating with his peers and people he is not familiar with.
  • He will develop strategies/sensory diet to help engage him in activities, communication and interactions with others.
  • He will begin to take age appropriate risks in new and old activities through accommodations, sensory diet, and coaching.
The school referral wasn't so scary per say, but being a teacher, I know that there is the chance that he will not qualify for services, unless there is proof that he can not make effective progress academically due to his diagnosis.  We have tentatively set up a meeting on October 11th and invited the public school representative to come to our home and meeting Little Man and discuss our concerns, questions, and his issues.

It is going to be a long 6 months of meetings, evaluations and mostly waiting to see if he will qualify for Special Education as well as what it will look like and how it will fit in with our lives.  This is when having both parents work full time can hurt how you squeeze in everything.  Already, trying to juggle 5 therapies a week and work isn't easy - add in Bee-bee's school and activities and my google calendar may go into overload.

Tomorrow I will meet with Little Man's school director, teachers and EI to discuss different ways they can help him be successful in the classroom.  I am hopeful that they will be accommodating and helpful as we try to understand his diagnosis and how to help him be more successful in communicating.

Friday, August 19, 2011


Long, long week...Thankfully, it's ended on a positive note, but it's been a long one!

We spent last weekend launching Operation Room Switch - Beebee (Little Man's name for his big sister) is being moved into the office, Little Man is moving into Beebee's old room, and the office is being moved into the nursery off of our bedroom (along with becoming a closet).  It is time, however we have accumulated waaaaay too much crap - way too much.  We are blessed to have so many people who love and adore our children, who love to buy them stuff or give them stuff.  Hubby has made many trips to the Salvation Army drop off and we still could get a dumpster.  The downfall of having a small cape for a house, is that we don't have much of a staging area to hold the contents of the room while it's being cleaned and painted.  Thankfully, I have a very patient father who has helped us out with the painting process and a very patient husband to help me with moving stuff.  Oh, have I mentioned that I also went back to work this week to unpack into a brand new classroom?  Yes, Operation Room Switch should have happened earlier in the summer...poor planning on my part.

Anyway, I chose orange and yellow for Little Man's room, while Beebee picked a lovely pink and purple for her walls:

We are slowly getting there and tonight BeeBee is spending her first night in her room (that still needs decorations and organizing):

Mean while, tonight is Little Man's last night in his cribby - tomorrow we will be moving him to his big boy bed in his new room.  I think he understands what we're doing, but since he can't verbalize it, it's hard to know exactly what he knows of his "new room" and "new bed."  I was thinking of making a sticker chart for him for staying in his bed and having him earn a small fish tank in his room.  I don't know how much he can understand about that, but I'm curious if it will work.

We had a good week over all - Beebee got to spend two nights with Nana-bee so Little Man had some uninterrupted therapy times and I could get some unpacking done of at work and organizing done at home.  He worked really hard in therapy this week and starts his outside therapy tomorrow.  Here are some additional highlights of the week:

Buddy-Dog got upset that Little Man fell asleep and couldn't play.

Little man with his Big Dog and broom - some of his favorite things.

Beebee at the "tavern" after Daddy's soccer game, explaining to one of Daddy's single teammates all about how to be a mommy to a Bitty Baby...I'm sure he was thrilled.

My old school being torn down...it's a little sad, but I'm super excited for my new room and my new teaching team! :)

And my loves tonight...I've been feeling cruddy and I ended up canceling going out tonight to stay home and rest...these three made me smile tons though. :)

We have a busy week coming up - new therapist for Little Man, more unpacking and setting up at work, Little Man's 6 month Early Intervention evaluation, IFSP meeting, daycare meeting for Little Man, and continuing to set up the new bedrooms.  Happy last week of Summer Vacation! :)

Friday, August 12, 2011

"Welcome to Holland"

After my crappy morning, a good friend sent this to me to read...it speaks for itself...

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

How Many Words?

The other day, our SLP was trying to come up with how many words/approximations Little Man has...so far we have:

1. /da-da/
2. /ma-ma/
3. /bee-bee/ Big Sister
4. /nah-nah/ Nana
5. /pa-pa/ Papa
6. /paw/ Paul
7. /gu/ go
8. /no/
9. /tee/ or /tee-tee/ TV
10. /ugh/ up
11. /peez/ please *with asl sign
12. /pee/  pee
13. /h/ help
14. /ruck/ truck
15. /lala/ or /wawa/ water
16. /mu/ more *with asl sign
17. /mu/ milk *with asl sign
18. /pu/ pull
19. /bu-bye/ *with asl sign
20. /eye/ ipad/itouch *with his own sign
21. /me/ me/mine/give me *with asl sign

So I think we're at 21, however names aren't suppose to count - so we have 15.  At the beginning of the summer we had 7 (without names).  So Little Man has almost doubled his vocabulary in  8 weeks - which is fantastic!  The not so great news is that by the age of two, most children should have at least 50 words (no names) and put two words together (we don't have that yet, even when prompted).  Lots of work ahead of us!

Fantastic Friday...yeah, right!

So things are just going wonderfully...if you think this, then keep on drinking.

This week hasn't been so "Fantastic"...granted, we're all safe, healthy, and somewhat sane...but little things have added up to be more of a "Frustrating" Friday.

My anxiety is creeping up...going back to work always stirs things up...moving into a brand new building, changing grade levels, and not being able to go in early to set up my classroom will definitely set it off.  Thankfully from my trusty sidekick of sleeping pills, I've been able to get three nights of awesome sleep.  I hope that the construction on the new building will finish soon so I can get in and set up.

Big girl is doing well - she had a good week, however she will tell you that we didn't do anything fun.  She is suffering from typical 5 1/2 year old ready to go back to school syndrome. ;)  This is from the same girl, who on Sunday, swung on a trapeze.  Yup, hubby's idea and she loved it.  Something tells me that she may request trapeze lessons instead of dance lessons this fall.

Not a great picture, but yes, that is Big Girl swinging on the Trapeze!

Little Man is doing ok - this week's therapy sessions were sort of duds.  We are realizing that 8am sessions aren't good for him and our other session was a meeting of his SLP, Developmental Specialist and an OT to figure out an action plan to help him.  There were some ideas tossed around, many of which we are already doing at home.  Something I'm not too excited about is the change over from his Developmental Specialist being his contact person to the SLP.  I had to open my mouth and assert myself more by telling the SLP that she needs to push him more - he is way more capable of producing sounds with the Dev. Spec. than he is the SLP.  I feel bad telling someone how to do their job, but as a teacher, I know this - if you don't set a level of expectations, the student will not rise to the occasion.  If the bar is set low, you will get low; set the bar high, and you will be amazed.

I spent 3 hours of my "free" time this week on the phone trying to get outside speech services for little man.  No one has after school times, and if you want them, then you're on a waiting list that is 6 months long.  No thank you.  We finally were able to get him in with a clinical fellow who is working under a SLP who specializes in Apraxia - not exactly what I wanted for him, but since he will be followed by the specialist as well, it was the best option.  The good thing is that they have Saturday appointments, so I won't be rushing around another night after work for therapy.

Other than that, we did have a good day at the beach the other day - Little Man even got into the water and enjoyed the waves.  Yesterday we visited my mom up at her beach house and we swam in the pool, went for a hike and played at the rock playground. 
Big Girl relaxing after swimming in the pool.
Rock Playground
Nana-Bee playing in the Rock Playground
This morning was tough - an hour and a half of non-stop crying, whining, whimpering or hysteria from Little Man - simply because we couldn't understand what he wanted.  Hubby gave him his iced tea (decaff) in a sippy and it became a nightmare - sippy was throw into the sink, new sippy came out and then was thrown.  Hubby held LM up to each cabinet to see what it was that he wanted, then he settled on eating Starbursts for breakfast.  I took the bag away and gave him 3 - then those were thrown.  Curious George came on, cries for it to go off ensued, hugs were demanded, then I was pushed away.  Cries for Daddy as he went off to work, hugs demanded again.  I put Curious George on again and despite cries for it to be turned off (by both kids), it has stayed on and entertained LM (who is now watching and eating trail mix the chocolate bits out of the trail mix for breakfast).  Thank goodness, we have some sanity for a little while. ;)

Sunday, August 7, 2011

Little Successes

Apraxia is so complex and when you mix it with Little Man's self regulation diagnosis, it's even trickier and more complex. He works his tail off in therapy and every day to get us to understand him and to become engaged in communication with us.

When Hubby comes home from work, he always asks us about our day...often I will remark about the kids' behaviors and Big Girl will show off something exciting or rattle off a bunch of stuff...but Little Man will give big hugs and smiles and then I will comment on something we did so Hubby can ask him direct question about his day, and LM can respond with a smile or a nod.

A few times in the recent weeks, LM has become creative in showing hubby what he experienced over the day. The other day we had a huge downpour in the afternoon and the sun was out, which meant an instant rainbow! So I carried Little Man outside and called for Big Girl to come out - and we saw this huge, bright rainbow. Later when Hubby came home, we were telling him about therapy, cheer camp, and our trip to the store, Little Man found a drawing of a rainbow in Big Girl's room, ran to hubby and pointed to it and then out the window and yelled, "Me!"

It is so hard sometimes to understand what Little Man wants, yet at other times, common sense just has to prevail. I either find myself simply "knowing" what he wants by slight gestures, or consoling him when I don't with, "I'm so sorry you are frustrated and can't tell me.". Granted, I think I am able to understand it most of the time, so now I'm able to add "Mind Reader" to my resume. ;)

This weekend, we got rid of a ton of stuff...so much that I felt bad, so we went to Toys R Us to get a new toy. Big Girl got some big kid legos and I was looking for the Little People Airport LM played with at a friend's house. Well, they didn't have an airport, but there was a small construction car ramp by Little People that he seemed to like, so we went with that. Well, later that day when Hubby came home and saw the new toys, Little Man picked up the box and pointed to a picture of another ramp set and pointed to hubby and then himself and cried, "Me!" Yup, as you can guess, he wanted that ramp and the same motions and "Me!" carried on throughout the evening. It's interesting, because Big Girl can ask and ask and ask for everything (and we don't always get it for her), but it was the first time Little Man has asked for something for himself. We have toy catalogs and advertisements out, but he has never made that connection...until now. So of course, after our washout of a yardsale, we celebrated his new found assertiveness for wanting something, and got it for him...and we all played with it after his nap. Later on tonight, he pointed to his new toy and then to himself, and then to his mouth which had a smile and said, "Me!". My instincts tell me he was telling me that he was happy. :). Yup, don't need to be a mind reader for that! :)

Saturday, August 6, 2011

Fantastic Friday *a day late

We had a good week, super busy, but good!

We spent last weekend getting much needed errands and things done around the house. We decided to have a yard sale on Sunday, as we have a ton of kid crap that we need to get rid of...I'm actually excited for that! Sunday we went to the zoo and the kids had fun walking around and seeing the animals...little man even sat still for us to sit and watch the Birds of Prey show and he seemed to enjoy it.

Big Girl's Accomplishments- This week, Big Girl went to a 4 day cheer camp through our city's rec department. She loved it last year, and I think she did enjoy herself this year, but she was disappointed that she wasn't chosen to be a "flyer" (the girl on top of a stunt). She was chosen to be the holder...I had to break it to her that at 5.5 years old and 49 inches, she most likely never be a flyer because she is so tall. Don't get me wrong, she is a very slender girl, but she has extremely long legs and torso and is typically a head taller than her peers. So after a few tears, she went back to camp and held her head high and did a fantasic job holding the stunt...her partner and her held the other girl the highest out of all the groups. And after all that, big girl then showed me her "award" she was given...

Photobucket Pictures, Images and Photos

Yup, Most Dedicated!

Little Man's Accomplishments- little man worked hard in therapy this week, he even got so mad/frustrated at one point he yelled at his therapist, "more pull!" when she went to put the stretchy ball away. Nana-Bee came over to watch the end of his session and was very impressed with how hard he is working...then after his last session for the week, Nana-Bee took little man for his first overnight up to the beach house she is staying at for the summer. It was a big deal for all of us. Of course he did wonderful, however he didn't go to sleep until 11:30pm...but he was content, played with his play dough, trucks, and enjoyed the long hikes on the trails near the house. Big Girl and I went up the next day and he was exhausted, but very happy. My mom said for the most part she could understand what he wanted/needed by his gesturing and pointing and a few vocalizations. He learned to say "Nah-nah" and she said that he would say it constantly if he needed or wanted her. :) When we got there, we swam at the pool, Little Man took a nap and after dinner we went for a walk in the trails and climbed a few trees...

Photobucket Pictures, Images and Photos

Photobucket Pictures, Images and Photos

And as we were walking, little man held my hand and I took this:

Photobucket Pictures, Images and Photos

I hope he always wants to hold my hand!

Have a great week!