Did I teach them well?

Ever since Courtney was very little I have tried to instill good things in her. One of the most important to me especially is not be prejudiced, not just to color, but to disabilities as well. My best friend in the ENTIRE world (you know who you are and I know your smiling right now) is black. My other best friend, who unfortunately passed away unexpectedly last year, would only date black men, therefore having mixed (beautiful!) children. Jen was also Courtney's godmother, so she always saw early on, that color was NO object in our lives. I still like to bring this up to her every so often and I know that because of the way I've taught her will help her to go far in the this world. Prejudice is a HUGE peeve of mine. I can't and never will understand why people only see skin color and not past that??

Moving along..... Picking on people. Courtney went to school with a girl, who a few years ago got picked on terribly. I was always asking Courtney what was said, we had very lengthy conversations about this and she always promised me that it was not her saying bad things. So for her birthday party last year I told her she should invite this girl to make her feel better and feel good. She did invite her, but before she said yes, her dad actually called here to make sure it wasn't a joke. Poor girl. So long story short, Courtney and this girl, who still to this day gets picked on occasionally are still friends. Courtney actually camped out in her pop-up camper for the holiday this weekend.!

So the icing on my cake came yesterday. Courtney and I were at Tops grocery shopping. Courtney asked me for ice cream and I told her no, we have some at home. Later on, walking down and aisle, a mom and her daughters - both about Courtney's age, were walking up the aisle. One of the girls, very cLeary had disabilities, most likely down syndrome. this girl then , as cute as she was walked up to Courtney, smiled and waved to her. I stopped and waited for Courtney's reaction. She waved back and smiled at her! Can I just tell you how proud that makes me?? It may mean nothing to lots of people, but to me it means the world. In the past when I hear about kids making fun of disabled children, it breaks my heart. I have a child with a disability. I've told Courtney many many times, that as Caden gets older, he will probably get made fun of and picked on often. So please do not ever think that it's ok to treat others in that way, since you live with Caden and will soon see it first hand. When I thanked her for being so nice to that girl, She said "MOM"?! geez. I said well you know most people never would have gave her the time of day. She said, well gee mom, I DO have a disabled brother and know how to treat others as well. I was BLOWN away. I guess she really does listen and pay attention to what I've tried for many many years to embed in there huh? After our little converstaion and we were walking away, she turned to me and said " So, does that mean I can get the ice cream now??"
ha!
How could I say No??!!

Yeah Courtney! and Thank you, That was one of the most thoughtful things I have ever seen.

Randomness

The boys love sitting together and sharing a blanket

Caden really enjoys playing with painters tape, it's quite therapeutic for him, this time, he got some caught up in it, I had to help get him out!

Courtney and Colin hanging on the swings

Aw... brotherly (ick) love

Enjoying out lunch picnic outside this past Saturday morning.

Crazy Colin

This kid is something else. I should have known that my last would be the biggest trouble maker. For the past week or so, he has been getting out of his crib. AND he's even good at it! He actually manages to land on his feet and that is WITH a sleep on. Nuts I tell you! Well this morning, I heard him wake up, so I peeked in to get a look at how he does it. The kid is amazing. He puts one let over, hangs on with only his hands, swings the other leg over and drops! No climb involved. I was cracking up! :-)

Then this morning while I was on the phone with Mike, Caden was getting ready to let the dog out and I *though* Col was downstairs getting ready with Courtney. So Caden goes into the garage to let Symba out and Says OH ma ma MAAAA!! So i come running and Caden is cracking up. I look outside and sure enough, there is Colin running through the back year chasing the birds. He managed to not only open the door which was locked up for the night, but go out, then CLOSE both the storm and screen doors so I couldn't hear him laughing out there. I couldn't help but laugh at him. So Caden and I went and hung out on the deck for little bit until I had to get ready for work. It was nice and relaxing after a highly stressful morning.

Yes, that's my crazy Colin!

PECS

Here is an example picture of PECS for you to see. PECS stands for Picture Exchange Communication. Basically it's a book with pictures Velcroed to it and a little empty space at the bottom. The child find the picture(s) in the book needed for the specific communication and puts them at the bottom of the book in the empty slot, and gives it to the person/caregiver they would like to communicate with at that moment. As I said before, this was HIGHLY suggested for Caden, since his words are very limited to begin with and there are quite a few signs that he doesn't know, nor do we. So this would be able to be used in conjunction with words and or signs or in place of if no signs or words are available at that time. I will have to do some further research on this particular item, price it out or see how I can go about making it ourselves and see if it will be something we can do to help Caden along. I know also that there is training involved in this too, so it's something that we again will have to bring up to school.

What is Apraxia?

Here is the best quick definition I could find for those interested in part of Caden's Diagnosis-

Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.

Developmental apraxia of speech (DAS) occurs in children and is present from birth. It appears to affect more boys than girls. This speech disorder goes by several other names, including developmental verbal apraxia, developmental verbal dyspraxia, articulatory apraxia, and childhood apraxia of speech. DAS is different from what is known as a developmental delay of speech, in which a child follows the "typical" path of speech development but does so more slowly than normal.

The cause or causes of DAS are not yet known. Some scientists believe that DAS is a disorder related to a child's overall language development. Others believe it is a neurological disorder that affects the brain's ability to send the proper signals to move the muscles involved in speech. However, brain imaging and other studies have not found evidence of specific brain lesions or differences in brain structure in children with DAS. Children with DAS often have family members who have a history of communication disorders or learning disabilities. This observation and recent research findings suggest that genetic factors may play a role in the disorder.

Children with developmental apraxia of speech generally can understand language much better than they are able to use language to express themselves. Some children with the disorder may also have other problems. These can include other speech problems, such as dysarthria; language problems such as poor vocabulary, incorrect grammar, and difficulty in clearly organizing spoken information; problems with reading, writing, spelling, or math; coordination or "motor-skill" problems; and chewing and swallowing difficulties.

The severity of both acquired and developmental apraxia of speech varies from person to person. Apraxia can be so mild that a person has trouble with very few speech sounds or only has occasional problems pronouncing words with many syllables. In the most severe cases, a person may not be able to communicate effectively with speech, and may need the help of alternative or additional communication methods.

n some cases, people with acquired apraxia of speech recover some or all of their speech abilities on their own. This is called spontaneous recovery. Children with developmental apraxia of speech will not outgrow the problem on their own. Speech-language therapy is often helpful for these children and for people with acquired apraxia who do not spontaneously recover all of their speech abilities.

Speech-language pathologists use different approaches to treat apraxia of speech, and no single approach has been proven to be the most effective. Therapy is tailored to the individual and is designed to treat other speech or language problems that may occur together with apraxia. Each person responds differently to therapy, and some people will make more progress than others. People with apraxia of speech usually need frequent and intensive one-on-one therapy. Support and encouragement from family members and friends are also important.

In severe cases, people with acquired or developmental apraxia of speech may need to use other ways to express themselves. These might include formal or informal sign language, a language notebook with pictures or written words that the person can show to other people, or an electronic communication device such as a portable computer that writes and produces speech.

FINALLY! WE HAVE A DIAGNOSIS!!

So today was our appt. at Strong in Rochester, what a great place! I am just SO relieved that we have SOMETHING on paper for caden man. We actually have a couple somethings:

Isolated Language Delay, Oral-Motor Apraxia with Autistic like quirkiness, he will be tracked for Aspergers in the future, as well ADHD, with meds possible in the future if he progresses at the rate he currently does.

That is alot for one little 3 year old if you ask me. I however was not far off on my PDD-NOS feelings for the past few years, since she said he does have almost all of those characteristics, but is able to use gestures and signs which puts him off the spectrum. I am OK with this. Apraxia is however a PDD (pervasive Developmental Disability) also. I've heard vague things about Apraxia, from his current speech therapist and don't know much really about it, so those of you who know me, know that I will be doing as much research as possible on the subject and plan to even possibly go to the library this evening and get some books. She also recommended a book called the "Quirky Child" so in case anyone is interested, I plan on reading this one as well. They were not thrilled with the idea of Caden being integrated come this fall, unless he has a 1:1 aide available to him, so that is something I will have to bring up to school, I am not sure how that works at all in our situation. They also highly recommended since his delay is so severe the PECS. Which is a picture way of communicating. So between the signing and the few words he has as well as combining it with the PECS, it should hopefully be able to cut back on the lack of speech related tantrums. So I have to do research on that as well. We will go back in 6 months for another evaluation and too see how far Caden has come since now. Apraxia we do know is a lifelong disability, but with the proper tools and therapy, we hope that he will be able to gain the skills and vocabulary to live an everyday normal life.

That is all I can think of at this moment, I've repeated this so many different times today, my mind is in a blur. It's been a long stressful day and I am glad its over! Thank you to everyone who has stood by our side during all of this, this is just the beginning, we have a long road to cover still!

Oh yea.... remembered something else. Caden also has a touch of anxiety (hm..seems to run in this house huh??) Due to his delays. So as long as it doesn't become burdening to him, we will not treat it with meds.

Rochester here we come!

This Coming Tuesday (May 19th) is Caden's visit To Strong memorial Hospital to hopefully FINALLY get some sort of diagnosis written on paper. Over the years we have been told a million different theories and we still can't get any one to write anything down. Why you ask? Could it be that once there is something in writing Caden's world will just have gotten so much brighter?? SO many more services, funding, medical insurance will be available to him. I can't understand why doctor's don't want what is best for our children. We've had one doctor tell us Caden was Autistic (PDD-NOS) Then we got test results back and to be able to put that in writing, caden would have needed to score and 8 - he got a 7 (figures) then we went to another doctor (same clinic) who after looking at the test scores, told us Caden was shy. Um.. SHY??? Have you met my son???? he is furtest thing from shy there ever was. That same doctor told us to immediately stop using sign language if we ever wanted him to talk. Well it's been over 1 year and Caden still is Mostly nonverbal and using a million signs to communicate. Why would you take a child's only means of communication away from him? I won't get on that subject. So here we are, 10 LONG months of waiting.... We made this appointment even before he was center based. Which brings me to my next fear, Long before Gateway Came along, Caden was in the worst regression ever. Since school began last October, he has shown GREAT progress, as with anything in life, you progress right??? Well I can't help but wonder if I would have better chances of then diagnosing him if we didn't center base him. THEN however, I can't imagine how far he would slipped away from us. Kinda like dammed if you do, dammed if you don't right??My child, for the most part was NORMAL, in all senses of the word (what really is normal??) He talked, sat up early, walked at 1 blah, blah blah. Why at 15 months did he no longer talk anymore? He no longer knew ANY words. He could no longer communicate with us. He became afraid of other children and still is. Tell me what part of Normal that is?? Have you ever had a child standing with you one day and lose them mentally/emotionally? Watch them slip by you? Go from a normal life, to needing speech 3 times a week (now 5) and then OT 1 time a week (now 3) and special education at 2 years old 2 times a week (now all day for 5 hours 5 days a week) and you then want to tell me there is nothing wrong with my child??? Please come back and tell me that when you see your child in a regression. Please, we'll talk then. IN the mean time, tell me how normal it is, that my child can't deal with any transitions, for the most part can not talk?, Can't stand to interact with other children? Has NO fear of ANYTHING??? and feel no pain??, He is smart enough to dismantle everyday household items and put them back together just from memory?, Why does he need to vacuum and push heavy items ALL day long?, Why does he run everywhere you take him?, Why is he sensitive to noise and light (his class is as light as it is at dusk), why??? Please don't tell me it's the age, since he will have been this age then for almost 3 years.

I can't tell you how nervous I am about Tuesday. So much so I am not sleeping at night, I wake with an upset stomach most days and it doesn't end. Please keep us in your thoughts on Tuesday.

Colin's Speech Eval

So last week was Colin's speech eval, to determine if he needed therapy or not. It was decided that he is NOT in needed of therapy, which is great news! He has a mild to moderate delay, which is not surprising since Caden is now developmentally younger then Col, so Colin only knows what Caden has taught him. We know that he has the correct sounds in him, since he does baby babble and has a couple words, we just need to work them out of him. He does good repeating after you, we just have to work on spontanousness. He actually said MaMa last weekend all by himself! I can't tell you how great that was to FINALLY hear after 22 months! It was the Saturday before Mother's day too, so I couldn't have asked for a better gift! So to sum things up, Colin is developmentally right on track, his speech is at the 15-18 month level, which is where the mild/moderate delay comes in, but that is not bad at all, and pretty easy to make up. If he's not saying 3 word sentences in about 6 months, we'll get another eval, but in the mean time, we know what tools to use and will do our best to get little man on a roll!

Last parent Group

So last Wednesday was the last parent group ;-( I am super sad to see it end. It's been a fun 12 weeks, from that first awkward week when you don't know anyone, and afraid to talk, eat or say the wrong thing, to the end, where you have made lifelong friends, who "get" you, your kids, and your lifestyle. Your no longer afraid to say anything and complain when you didn't like the food! there were tons of laughs, smile, arguments, and even more tears. You share a certain part of your life with these complete strangers and enjoy it. Most of my friends don't even know that part of my life, heck alot of our families don't even know that part of our life, that or they care to care know it, which ever, these people have become family to us in the past 12 weeks. we had a great last meeting, where we all brought dishes to pass and chowed down! We shared as usual and said our goodbyes, lots of hugs and not so many tears. After all this is a new beginning, not a end right?? Keri and Maria are SO awesome, they got the ENTIRE group and our families tickets to an upcoming bison's game. Although I am not quite sure how that will go with Caden or even Colin, I at least know that everyone else there with us will be having the same feelings walking in. We were also given certificates of completion and some GREAT Awesome Mom & Dad plaques, with Caden's picture on it. They were way to thoughtful. each one had characteristics of each person written on them too. It was obvious lots of time and thought was put into each one! I tried to take some pictures the last night, but didn't get too many. I am bummed I didn't think to get someone to take one of the whole group. We're hoping to do a reunion during the summer, so I'll be sure to do that then.



Tiffany & baby Sophia
Pauline
Kari and Maria, our fearless leaders (Keri is holding sleeping Sophie & Maria holding new baby Sidney - only 2 weeks old!)
The Parents Cake!
Mike being goofy

Long time!

**WOW** has it been a LONG time since I've posted huh? Tons has been happening between work and home and I just haven't been able to take the time to get updated. I'll do each update in a separate post so it doesn't get as confusing, I hope!

A Chorus Line

Kym & Meema are going to see "A Chorus Line" On stage tonight at Shea's. I am super excited to see this. As a child this was one of my all time favorite things to watch on TV! Many years ago, we were able to go and see on stage at UB Center for the Arts, then a couple months ago I noticed that it was going to be traveling to Buffalo at Shea's! I am very excited to be going tonight. I love to see plays, all kinds. High School ones especially are some of my favorite! So I'll meet mom tonight for dinner at Jack Astor's *yummy* then head downtown to Shea's. It will be a late night, and the kids (and Mike) will be well off to dream land before I get home, so that's a bummer, but I am thrilled none the less to see the play!!

Fun with Colored Cookie Dough!

We had a busy morning! While Mike was busy helping friends of ours move, the boys and I got busy making a Veggie Pizza to snack on later today & then we opened our new Colored cookie dough and made some pretty colorful sugar cookies! Caden has fun, Colin didn't really get what he should be doing, and then they both lost interest after about 15 minutes. So mommy had fun making whatever idea's came from Caden & mommy's minds. We did have fun though... Now time for the nap! YEAH!!

Photo shoot with Weighted Wrap

(not wanting to miss out on the fun, Colin strikes a pose!)

We had fun doing this first thing this morning. I think Caden really enjoys his new wrap!

Random Kid Updates

We have decided to call early intervention and get Colin evaluated for speech - or lack there of, I should say. Colin has very limited speech for his age level, which doesn't really surprise me since his only real model is mostly non verbal at this point, however we thought it best to get him help if it is needed. He has been screened for Autism by our regular ped. So there is no concern him being autistic as well, thank goodness. So today we had our initial meeting with our start up service coordinator and got all of the paperwork started. May 13th she will come back with the speech evaluator and Physical therapist as well to evaluate his speech and some physical aspects that I've been concerned about with him also. Unfortunately my boss is on vacation that week, so I won't be able to be here for the evaluation, which is a pretty big bummer, but I am sure Mike will make all of my concerns known as well. Colin will have to have either a 33% delay in one area or 25% delay in 2 area's in order to qualify for services in the specified area's, so we'll see if the need is there or not on that day. So until then, we'll see what happens. Can you believe that at 22 months that child is STILL not saying Momma? or Ma?? Do you have ANY idea how heartbreaking that is for me?? It's horrible. I was able to breastfed him for 20 months and he can't even call me MOM?? ugh, the nerve! :-) Hopefully I will hear that beautiful word sometimes soon out of that cute little mouth of his.

Courtney has become our little social butterfly as of late! I am so Ok with this and glad she is coming out of her cocoon so to speak. Her Friend Alyssa we just adore as well as Elena (thank you to parent group and Caden for making this happen!)and between the two of them she has really grown. Alyssa and Courtney go to school together, so they spend alot of time together. After school, going to school functions and at least once typically on the weekend, Alyssa spends the night her or Courtney there. Then Elena, lives out in East Amherst, so we don't see her as often. Courtney never misses a parent group so she is able to spend time with Elena then, and for the past few weeks, they have taken turns spending time at the others house as well. Tonight Courtney walked to a Friends house right after homework. Came home for about 20 minutes when another friend Amanda called to go to the movies. I dropped her off at the movies at 7:30, and Amanda's dad brought her home. Tomorrow we have plans for Elena to come over and the spend the night as well. I guess the term would be fly butterfly fly right??


Anyone want to buy us a riding lawn mower?? this is Caden's newest need. Leave it to my child to want to have a RIDING lawn mover when we have a only 100 feet of property! :-) He saw a picture of one a couple days ago in Sunday's ad's and was addicted to it. He wouldn't put the paper down, slept with it and even took it to school. Finally at one point he put it down, I grabbed it, tossed it and it was never brought up again...... UNTIL today! A NEW add from Sears came in the mail..what's on the front cover? Yep! Darn riding lawn mower. If it's not a vacuum, then it's a mower. Ugh. So NOW he really really wants us to get him one. He's VERY serious. I am not sure what to do. We had a full out 45 min. blow out, calmed him enough to eat and then had another one when we got home, because we didn't come home with it! So if anyone wants to buy us one, please let us know!

The Weighted Wrap has arrived!

Once again ~ Donna from affordableweightedblankets.com has done a wonderful job making something special for Caden! GG offered to buy Caden his weighted wrap that we wanted to get for him, so of course we said "sure!". We knew it would so much easier to cart around the wrap/lap pad, then it has been with the blanket. This way we can take it in the car, to dinner, to school as needed, on road trips, everywhere we desire and not have to lug 6 lbs around! When we picked our fabric, there were no Monkey's included in the samples, so Caden chose Wall-E. I made a note to Donna that Caden really loved his Monkey's and if she had any fabric with them, it would be wonderful. She then actually went out and found his some! Not once but Twice! The second one ended up being the favorite, so we went with that. The package arrived in the mail today and as soon as Caden got home from school we let him open it. Inside, was not only the wrap, but a super cute little bag to store/carry it in with a fabric patch on the front and a cute little monkey as well! If you could have seen that expression when he saw that monkey, it was worth a million dollars! We brought the wrap to dinner with us already, which was nice, since Caden was in "full Autism mode" during it! All in all, we love the wrap, blanket and of course Donna for doing the amazing, wonderful, heartfelt work that she does.



Open that special package Caden!
Look at that expression seeing that Monkey ~ It's priceless!
Opening the bag
Got the Monkey-look mom he has a shirt on!
Get it out!
Yea It's here!!
A blurry picture, we were in a bad spot with the sun coming in the front door-so the shots aren't the best, but I had to put this up since it looks so cute on his shoulders.
the back side!
On the lap
Close up of those adorable monkey's!
the Carry/storage bag
All together with the bag/wrap/monkey!

Thank you GG!