Introducing Aiden - A Booklet for the IEP Team

Well before Aiden's IEP I reached out to some of the other CI mommies to get advice and guidance for a successful IEP. A few of them told me how they created a binder with all of their child's information to present to the IEP team. I thought this was an excellent idea to hand out to everyone at the meeting.

The people who evaluated Aiden (the psychologist, speech pathologist, audiologist, PT, and OT) had never met him. It's these same people who will be a continuous part of his team, working with him day in and day out to meet his goals. I wanted to provide them something at the IEP that would give them a glimpse of who Aiden is before he starts school.

Even more so, I knew our district would be there and make a decision of whether or not they agreed to fund Aiden to attend a preschool outside the district. These are the same district representatives who will be at every IEP meeting we have and the same representatives who will decide when they want to stop sending Aiden out of district.

So more than anything, I wanted these representatives to understand that Aiden was our child first. I wanted them to know what our hopes and dreams were for Aiden. I wanted them to know WHO Aiden was and that to us, as his parents, we will ALWAYS go above and beyond to make sure he receives, what we believe to be, the best placement for him.

Here's what Aiden's booklet consisted of:

• Cover - I put a picture of Aiden, our names, his birthdate, date he was implanted and where, CI brand, and activation dates.

• First tab: Introducing Aiden - Background on Aiden (where he was born, brothers, sisters, pets), then wrote a paragraph on "Our Favorite Aiden Qualities" and one on "Our Hopes for Aiden". This is what I wrote.

• Second tab: Timelines - Detailed timeline of his hearing journey from the date he failed his newborn hearing screening to our latest mapping issues and fixes; a timeline on his language and speech therapies; a timeline on his gross motor developments/therapies (since he's been in PT since birth), and a paragraph on his sensory integration/OT history.

• Third tab: Current Goals/Evaluations - Included a copy of most recent evaluations, progress reports, goals from each therapist (speech, AV, PT, OT, and Regional Infant Hearing Advisor). I also included the most recent IFSP evaluation and write-up.

• Last tab: Audiograms - copies of all his audiograms (especially since they have an on site audiology suite with a full time audiologist).

Instead of having them professionally copied and bound, it was WAY cheaper to buy my own report folders and make my own tabs (well over $50 cheaper!)

Everyone found it very helpful and the school even asked for an extra copy to provide Aiden's teacher (who wasn't at the IEP since Aiden wasn't "officially in" her class yet). I also made a couple extra copies for myself to use and update as needed for new therapists/teachers.

Two weeks and counting until he starts. Can you believe it!?!

Resources for IEP Prep

Even though we had strong intentions our school district would not fight us to send Aiden to the oral deaf preschool we chose (since they do not have a program for kids with hearing loss outside of their special education preschool and most of the district's hearing loss kiddos attend here), we still wanted to be prepared all around.

In preparation for Aiden's IEP, I read, and read, and read. In essence, I wasn't only reading to educate myself for Aiden, but also for his sister. It is through our struggles to get my daughter evaluated that I have come to understand the laws better and have learned that two things every parent going through this process should do:

1) communicate all requests in writing, and

2) write/keep EVERY.little.thing down in a notebook/folder, from phone conversations to meeting dates and outcomes to dates any letters were sent and received to copies of emails etc.

Here are some websites I found helpful throughout Aiden's and his sister's IEP/request for evaluation process:

• Wrights Law (a leading website on special education law and advocacy) and on THIS page within the Wrights Law website, there are tons of links for FAQs on IEPs.

• THIS chart shows a table differentiating the IFSP and the IEP.

• Did You Know? - a great sheet to hand to your child's educational team with facts on cochlear implants.

• IEP Checklist

• A Parent's Guide (this is a simple parent's guide I found helpful)

• Go HERE for a good overview of the steps in an IEP process.

• This IEP Goal Bank and this one are both good sites for sample speech and language goals. The second link also has sample goals for all areas. (I went into the IEP meeting with auditory, articulation, language, gross motor, and social/pragmatic goals/objectives based on what we've been working on in AVT, speech and PT - remember, parents are a part of the IEP team. WE are there to help set goals and objectives too!)

Are there any websites that you found helpful through your child's IEP process? If so, please leave the website in the comments section to help other parents going through the process.

I also created a getting to know Aiden booklet to bring with me to his IEP meeting. I will post about that next.

Wednesday Workout - Aiden's Experience Book

The experience book introduced to us by our AVT is not quite the same as the ones I've read about or made in the past. It is not one book on one subject, but a big binder full of daily experiences and lessons we're working on. Aiden's AVT started this with us and we not only use it at home, but also in therapy. It is a wonderful tool to help facilitate conversational speech, story telling, and it is a great means to building a strong literacy foundation. (oh, and it can serve as a great scrapbook for mom too!)

The ultimate goal is to get Aiden used to, and excited about, bringing his "story book" to therapy to tell Dr. Don all about an experience from that week. Kids are typically more excited and more apt to talk about something they've experienced, know, and understand. Depending on how long we're in AVT, once Aiden gets to an age where he can draw his own pictures, he will, or tell me about an experience in his day that he wants to add to his book.

Creating one page a day can be overwhelming, so Dr. Don and I decided to make one personal experience page a week and one learning/theme page a week. Before I make the page, Aiden and I always talk about the topic first then make the page together.

Situations we currently incorporate into Aiden's book include:

Emotional Experiences

(Today he fell off his sister's bunk bed, so I need to make a page on that for this week. This is when I cut my thumb and Aiden was upset about it).

Special Days

(birthdays, holidays, grandma visiting, etc.)

Fun, Interesting Daily Type Events

(we make warm cookies a few times a week for bedtime snack)

Changes in Aiden's Life

(for example, I'm in the process of making a few pages about starting preschool. Here's one I made to help Aiden understand why Ryan and Kailyn left everyday when school started up)

Future Events

(for example, we're heading to the beach for Spring Break, so I'll make pages on packing luggage, riding in the car, pictures of the beach etc)

Social and Hygiene Skills

(for awhile, he was constantly eating his boogers - ewww!)

Themes/Specific Lessons

At Aiden's age, a lot of our pages are based on themes/learning experiences (colors, letters, bears, sequencing, holiday vocab., or whatever the "theme of the week" may be.

As you can see from our example pages, it doesn't have to be hard and time consuming.

Some things I do to create these pages with ease:

• Use clip art, printable from websites, and magazine pictures. I'm no artist, so if I don't have a picture readily available of Aiden performing the task we're talking about, I find it on the Internet or in a magazine then I ....
• Draw stick figures with a picture of one of our faces for the head. You can find great online photo print specials. I pick a few pictures of the family with good head shots then print tons of them so I can cut out our heads and use them throughout the book.
• Use cardstock for the pages, it's much sturdier. Oh, and I make sure the experience we're talking about is on facing pages (so I use the front and back of each sheet), like we're opening a book and don't have to flip the page as we talk about it.
• Use descriptive words, vocabulary you want them to learn, coloring book pages, and printables to help with themes
• Keep and use items that represent an experience and gives the story an even more personal meaning, i.e. movie ticket stub, postcard from a place visited, wrapping paper, a card received, picture from the package used (ex. picture from the brownie box), invitation, etc.

Items I Keep on Hand

(I keep all my supplies in two shoe boxes, so when we sit down to make a page, I have all my necessary supplies in one spot).

• stickers and/or specialty paper (this is an easy way to make a quick page to talk about holidays, animals, etc)
• ziplock baggies (to hold pieces for some pages - for example, we made a snowman on one page and I would have Aiden dress up the snowman with different color scarves, mittens, hats that I cut out for it, so I stored all the snowman's clothes in the baggie.)
• Crayons, markers, sharpies, glue, hole punch, stapler, tape, scissors
• Laminator (great investment)
• any misc. items collected to use one day -i.e. bubble wrap, magazine clippings, clearance holiday items to use for the next year)

There are a lot of great websites, but some I enjoy for themed units are:

• dltk-kids (a non-member site with tons of preschool activities, holiday crafts, and printables)
• Daycare Resource (a member site, but they do have some free printables)
• Making Friends.com (non-member site, many printables for paper dolls)
• Preschool Printables (non-member site with tons of fun games, ideas)
• Hubbard's Cupboard (non-member site with good lesson plans and printables for different preschool themed units)

Ten on Tuesday

Okay, so I'm joining the bandwagon of a few of my favorite blogs. I love reading posts like these, just not good at keeping up with a weekly theme. So if it's here again next Tuesday, "Yay me!", but good chance it won't be two Tuesdays from now.

1. I can't believe I completely forgot to write a blog post about "THE BINKY!" Aiden has been binky free for nearly a good month now! CAN I GET A WOO HOO! We were losing them left and right and I refused to buy new ones. So after the last one disappeared (and believe me, I had NOTHING to do with it, although I'm sure "the other parent" may have), he was done. I found two of them within a week and immediately threw them in the trash (well actually, I stashed one for emergency purposes, but it hasn't been needed). How 'bout my little man going cold turkey?!? I think I miss it more than he does.

2. I am a list maker. I run in circles if I don't have my list. There could be 1001 things needing to get done, but if I don't have a piece of paper with every.little.thing written down, I start on lots of little things, but accomplish ZERO. ZILCH. NOTHING. I also like the physical (and very mental) aspect of crossing things off my list as they're completed. I know, OCD/ADD/whatever ... yep, a little (ok, maybe a lot) of each, but someone needs to take control and get things done.

3. Aiden starts preschool in 12 days and counting. Secretly, I am so excited. I hate to lose my little sidekick, but the boy is becoming quite unruly these days and listens to ZERO. I've had to come up with a timeout chair - which he sits and laughs at me as he sits there. I have seriously thought of telling him to take all his clothes off and run around naked just for the mere fact that he would then let me dress him without going 10 rounds. Anything I say, he goes completely against. I think aliens have taken over my son's mind and body.

4. Kailyn and I had the best girl's day this weekend. We started with each of us getting an eye exam (I know, not so fun, but poor honey has my bad eyesight and she needed new glasses and I needed contacts to keep others safe on the roads - from me), a trip to Barnes and Noble, and then a movie. We saw Just Go With It . LOVED IT! and I was so excited to actually laugh at practically all the previews. It's about time a bunch of good flicks were on there way out.

5. This is the year my first born, Ryan, will surpass me in height. I'm a good 5' 8" and he's right there by me - at 14 years old - and in a size 11 shoe. He walks past me and pats me on the head with that shit eating grin on his face (yes, the same one he passed on to his little brother). I told him though, beware, growing taller than me just means if you make me mad, I get the broom.

6. Bella has made a good adjustment into our family. We all love her to pieces, except two people - the man who didn't want a dog in the house to begin with (although even he says she's a good dog, which is HUGE) and the girl who cried all year long that all she wanted for Christmas was a dog. Ya. Go figure.

7. That same little girl mentioned in #6 above, asked for a HORSE today. Are you kidding me?!? You know, because they're so much less responsibility. Oh my. I feel for her future husband. lol

8. I am trying to make do with my biweekly grocery shopping items and cook with what I have in my pantry, fridge and freezer and NOT run to the grocery store every.single.time I need one ingredient. Because that ONE thing typically ends up being TEN things. Our monthly grocery bills have been outrageous because of impromptu trips like these. So tonight I needed a can of tomato soup, but instead pureed up some tomatoes with some tomato sauce and added in my own spices. The recipe actually came out better and I'm sure I saved myself $50 plus easily.

9. Many prayers are being said to St. Anthony again lately, who is the Catholic Patron Saint of lost things. My stomach is sick. We have not been able to find one of Aiden's beige CIs for nearly a week now. I KNOW it's in this house as it was discovered missing in the morning, and Aiden hadn't been out of the house the whole day before. One of those, Aiden's daddy thought I put it up and I thought he put it up, but come to find out in the morning, neither of us put it up. The only thing I can think of is it is clung onto some metal contraption. I'm getting nervous I may have to use my one time lost replacement card. Ugh.

10. and a little humor to end - while choosing which movie to see with Kailyn, I said to her, "You know honey. This movie is PG-13 (she's 10) and there may be things I'm not sure you should see or hear." Kailyn, "Like a bunch of swear words?" me (thinking more along the lines of what kind of sexual content a pg-13 could have) "Exactly honey, the swear words." Her, "Don't worry mom, I've heard them all from you. I'll be ok." Lovely. ; )

Parents Helping Parents

Every one of us has our story. None of us will ever forget that dreaded day when we heard the words that our child had a hearing loss. No matter if it was profound, severe, moderate, or mild, I'm sure it all stung just the same. When I think back about that day, I still here the voice of the teacher on Charlie Brown, "Wah, wah, wah, profound, wah, wah, hearing loss, wah, wah, cochlear implants, wah, wah, wah."

"Um, excuse me?"

Then we were sent away with a list of organization's and their respective websites. None of which relieved my pain and hurt and worry and all those other crazy emotions welled up inside my twisted stomach.

It was the parent's voices, their stories, their videos of their deaf child listening to them, talking, and singing. It was the parent's of children with hearing loss who helped relieve all of the above plus some. and for each and every one of them, I am thankful.

So, if you are a parent of a child with hearing loss, and you'd like to help the parents who are new to this journey, please take five to ten minutes of your time and check this out:

AG Bell will be dedicating the May/June issue of Volta Voices to parents and families of newly identified children with hearing loss (0-3 years of age). The content will primarily focus on the information parents need to know immediately following diagnosis and during the child's early years of listening and spoken language development. To that end, AG Bell is asking parents of children with hearing loss to share their experience. If you'd like to participate in this brief 5-minute survey, go HERE. The deadline to complete the survey is Thursday, February 24.

PARENTS HELPING PARENTS - That's what it's all about.

Wednesday Workout - BEARS

Every couple of weeks I choose a core area as our main focus at home. Whether it be a specific theme, prepositions, following two step directions, a specific letter sound or whatever the "focus" may be, we center it around listening and language for that time. I'm going to do my best to share some of our activities every Wednesday, but we'll see as time schedules tell. I'd love for you to comment on any activity ideas you have to add for all to see!

The past couple weeks, we've been working on BEARS.

It started at Aiden's speech therapy a few weeks ago when wonderful Ms. Cheryl read Copy Me, Copy Cub. She used a brown paper bag for the cave, pictures of bears printed from the internet for mama and baby bear, cotton balls for the snow (which Aiden glued on the "cave"), then they tore up brown construction paper together for the leaves to put inside the cave. Very cute idea and Aiden loved acting it out as she read it to him.

That same week, Aiden's AVT read him Goldilocks and the Three Bears. Aiden had never heard the story before, and with all the repetitions, I figured it a good book to work on three-four word phrases.

From there I extended it to bears in general - brown bears, black bears, polar bears, panda bears, and of course, teddy bears (and made a page for his experience book on the different kind of bears). Since we were talking so much about bears, I thought it was a perfect opportunity to also hone in on the /b/ sound since Aiden has trouble with it (he has trouble with a lot of his stops in speech production).

There are a lot of Goldilocks and the Three Bears books out at the library, each with their own twist. Some seemed too difficult and busy for a two year old, so I picked the easiest one that stuck to the story line as I know it. Dr. D had this boardbook by Bryon Barton, which was just short enough to keep Aiden's attention.

As I read the story, we act it out with different toys Aiden has to represent each scene. This story is also great in identifying the concept of size (big vs small, big, bigger, biggest, etc), adjectives (soft, hard, hot, cold etc.) and most fun of all, using different kinds of voices. To emphasize the story and concepts in yet another way, I made stick puppets and scenes from pictures I found on the internet.

We've also been reading other bear books such as these,

and one of my all time favorites which can be found here.

I'm also teaching Aiden the infamous teddy bear rhyme (I remember singing this as a kid jump roping):

Teddy bear, teddy bear turn around,

Teddy bear, teddy bear touch the ground,

Teddy bear, teddy bear read the news,

Teddy bear, teddy bear tie your shoes,

Teddy bear, teddy bear go upstairs,

Teddy bear, teddy bear say your prayers,

Teddy bear, teddy bear turn off the light,

Teddy bear, teddy bear say goodnight.

We each get a teddy bear and play together and I often find him singing parts of it as he plays with his teddy bears on his own.

Other songs I found we like:

Three Brown Bears (sing to Three Blind Mice)

Three brown bears, three brown bears,

See all their beds, see all their chairs,

The mommy cooked in a big brown pot,

The daddy's porridge was way too hot,

The baby bear cried a lot,

Three brown bears,

Three brown bears.

Hibernation Song (sing to Are You Sleeping) (and works on those "ing" verbs we've been practicing)

Are you eating, are you eating

little bear, little bear,

Eating nuts and berries,

For the long, hard winter

Little bear, little bear

Are you sleeping, are you sleeping

little bear, little bear

Sleeping through the winter

You are hibernating

little bear, little bear

Are you waking, are you waking

little bear, little bear

Now that it is Springtime

Sleeping time is over

Little bear, little bear.

A couple other things we've done:

• print out color sheets of the letter B, b and of different bears from the Internet
• play different songs/cartoons on You Tube to hear them in different voices
• give Aiden the props and let him tell me the story OR give him any of the books we've been reading and let him tell it to me (which of course is all over, but GREAT way to try and expand those sentences!)

Vocabulary taught: bear, cub, cave, snowing, scratching, waking, biggest vs big, smallest vs. small, hard, soft, just right, porridge, forest

IEP Meeting Success

We made it through Aiden's IEP meeting without any black eyes. Actually, there weren't any conflicts at all. He qualified for auditory training, speech and language therapy, and physical therapy. Our local school district was very cooperative and didn't bat an eye at any of the services we asked from them, the big one for them to send Aiden to an out of district oral preschool for kids with hearing loss (and will also offer him PT and audiology), including transportation to and from. No problem.

The only thing they really piped up on was in our favor and asked the school personnel at the preschool we chose for Aiden if they had any GT (gifted and talented) services because his cognitive functioning (IQ) was so high. Tell me I wasn't smiling that big ol' proud momma grin.

We didn't sign anything yet because we want to go over it again with our AVT and RIHP (Regional Infant Hearing Program) coordinator. The goals they set are very general at this point. I understand they need the time to evaluate Aiden using their curriculum tests, and after a couple months will have a much better feel for where he's at and how he's performing. I'm okay with this (for now), yet wonder if I should be?!? I mean, he's going to be in a preschool setting where the main focus of everything they do incorporates learning language and learning to listen. I think I am still going to push for some specific ones to be set that we've been working on at home though. The good thing is, is that he'll only be there half days (five days a week) for 2 1/2 months until summer break and then we'll call another IEP at the beginning of next school year to update his goals and objectives. At that point, they'll know Aiden and together, we can come up with more specific goals that can also include his growth over the summer.

We set a start date of March 14th, three days before his third birthday. At the end we walked down to meet his teacher. Aiden walked right in, took a look around (the kids were just getting up from nap), tore off his jacket and headed over to lay down like the other 5 or 6 kids were doing (very small classes!). He didn't want to leave. My heart melted.

A smooth IEP meeting PLUS watching Aiden walk right in like he's been there forever EQUALS tons of stress off mom's shoulders. Still having trouble letting go, but definitely less stressed! Now if I can only get through my daughter's process this easy.

More on the evaluation, transition, IEP process to come! Oh, and on the preschool we selected.