Isaac's Gentle Side.... Caleb's Quiet Side

Caleb and Isaac have had quite a show of emotions these days.  They are figuring out how to be lovey and hug each other and act all gentle like.  Then the next second they are pushing each other down, pulling hair, scratching each others faces, banging their heads and acting mean like.  I do get nervous having them near little babies because I truly don't know how they will act.  Today I had the pleasure of watching my 3 month old niece Abbey.  Isaac seemed very interested in her and the last time she came to the house he was very gentle with her.  Isaac likes to play with a baby doll every once in awhile, so I asked him if he wanted to hold the baby.  He immediately signed "YES" to me.  So I ran and grabbed my camera just in case it turned out good.. and it did :)

Here is the precious cargo that we experimented with.  Isn't she precious??

 

First we sat them near each other and played... that went well

 

Then we explained that she is little and he had to be gentle with her so he played with her little fingers.

 

Then the loving began, he was so kind to her.  It was so beautiful :)

 

 

 

After all of the cuddling from Isaac we called in Caleb.. He was not as excited.  He played with her little fingers and looked  at her a little bit.

 

Then we asked Caleb to give her a kiss and we got this look....

 and then he ran!!!

 

It was a nice day to sit and cuddle and get my baby fix for a few hours.  The boys did really well and Abbey put up with her cousins like a champ.  

Wordless Wednesday: Isaac with Tristins Glasses on.... upside down!

3-2-11 Spread the Word to End the Word

"Your so Retarded" or  "Oh I'm such a retard"

Have you caught yourself saying the above words before?? I have... before I had my children.  I never really had anyone challenge me on the words.. I never really used them thinking of someone with special needs when I said them.  I just used the word simply because other people did and it got a laugh.

Now that I have children with special needs, yes I said "children with special needs", it really does mean something else to me and it really does hurt when I hear people use is.  To this day I still have family members using this word.  I have asked them to stop and they tell me that they are not using it to offend me or the boys, but... it does.  What does the word mean?

–verb (used with object)

1. to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.

–verb (used without object)

2.to be delayed.

–noun

3a slowing down, diminution, or hindrance, as in a machine.

4.Slang: Disparaging .

a mentally retarded  person.

ba person who is stupid, obtuse, or ineffective in some way: a hopeless social retard.

 

The above words do hurt.  My boys have PDD Autism, my boys have Down Syndrome, my boys are non-verbal, my boys are delayed..

 

BUT my boys ARE NOT STUPID.  My boys are 5, they sign over 400 words, they read over 100 words, they are writing their name, they are spreading their love to anyone and everyone they come in contact with.  They don't care if you are in a wheelchair, if your obese, if you have no money, if own a million dollar mansion.  They know unconditional love, they show unconditional love, they TEACH unconditional love.  That sure does not sound like someone who's stupid to me.  

 

Today take the pledge to not say the "r" word anymore.  If you catch yourself doing it, make a mental note not to do it again.  When I hear my childrens friends say that word the first thing I do is ask them if they know what that word means.  ALL of them have said NO.  When I point to the twins and tell them that they are making fun of those boys they all stand their with their mouths wide open and say they are sorry.  I'm not trying to make them feel bad, I'm trying to teach them... and by doing that I hope to change their language forever.  I can't do this alone, and I hope other parents will step in and ask their children not to use this word.

I DOES HURT!!

 

Communication Options... Archos vs iPad

We have been thinking about getting an iPad for several months now after attending a training workshop in Orlando Florida at the national convention for The Arc in November.  It was really exciting to see all the possibilities on that unit for people with special needs.  Vision impairments, hearing impairments, speech aides, there were alot of really cool things the iPad could do.

The price of the iPad is minimal compared to say a DynaVox but they are still rather expensive when your talking about getting them for five year old identical twin boys who can be very naughty and end up throwing things for no apparent reason on a daily basis.  My husband Tom has been researching the Archos 70, 250GB Tablet Computer.  The price of that is even better yet at about $350.

We have been told recently that they (speech therapist and behavioral specialist) think that my boys are good candidates for an iPad.  For those that are just reading this doing a search from google on comparing iPad and Archos, I have 5 year old identical twin boys BOTH with PDD Autism and Down Syndrome and who also both happen to be non-verbal.  We have been communicating with them via sign language for the past 4 years.  We are very proud of that.  From the mouth of an educator who works with my boys we were informed that "this is another disability in itself".  When I asked what she meant by that she said, "Well nobody knows what they are saying when they sign."  That truly cut me to the heart.  She was right.  We can only teach so many people sign language... and let me say I have truly done my part by bringing Sign Language Workshops to The Arc of Jefferson County.. But really when the boys goto school the kids will not know how to sign to them and everywhere we go now a days, everyone can tell they are signing, but they ask us what they are saying.  It makes me sad that we have come so far and its still not enough.

Not only are my boys signing as well as they do, they are also reading more than 150 words thanks to the Your Baby Can Read program.  So after some discussion we have decided that since the boys are reading and starting to understand words.. they can identify all of their letters.. we may try to get them to begin communicating with pictures and words on an iPad or Archos.  There is software out there that will "speak" the words for you, I think this is probably becoming very socially acceptable to carry around a computer gadget with you wherever you go.

Looking for feedback from those that have used one or the other.

Lauren Potter on Bullying..

The Arc of Jefferson County and Camp Friendship

Its time again for the Annual Run/Walk for Someone Special event to occur for the 32nd year in a row.  Last year was a record year with 365 participants and $40,000 raised.  ALL money raised at this event stays local and helps The Arc of Jefferson County puts on 2 summer camps for children with special needs (a total of 3 weeks of fun) and a camp for children with Autism (1 week long).  We are a very rural area and to be able to fund something like this ourselves with NO GRANTS or loans is really an exciting thing for us.  On average it costs us $100 per camper per week to do all we do.  We provide a nutritional snack and meal each day for campers, counselors, teachers and Directors.  We provide transportation to and from camp each day.  We have a very qualified teaching staff and need to pay them for their time with us.  We have been blessed to have many people in the community donate their time or provide their service at a low cost at the camps to provide fun for the kids.  4-H has brought in some horses, local fire department has brought in their trucks and gear for the kids to dress up in, karate demonstrations, service dogs, dental hygienists showing proper dental care, and much more!

Here is me finishing my 2 mile fun/run last year in 19 minutes 43 seconds!!  (The one in the yellow shirt with sunglasses that looks like she's about to die...lol):

Here are my handsome twins who have brought me to know and love The Arc and Camp Friendship:

As with any non-profit, funding is harder to come by these days.  People are not giving their money like they used to.  Please consider donating what you can.  Every Dollar does add up and EVERY Dollar is appreciated.  This year my boys will be going to camp.  Part of my passion as Executive Director of this great organization is to keep services going and growing....and to continue bringing new services to this area, not only for my boys, but for the many children and adults that deserve to have something to look forward to each year, and to make memories that last a lifetime.

No...Baby... Boy

I had the cutest interaction this morning with my Isaac.  I am in no way officially potty training the boys yet, but I am practicing the sign with them and talking about going to the potty on a daily basis.  They are understanding what I am asking them to do and I view that as progress.  My hopes are to have them trained by the end of summer.

This morning as I'm changing Caleb, I ask him if he would like to try and go sit on the potty, he signs "yes potty".  I take him into the bathroom singing and dancing and making a big deal of the fact that he said YES. I place him on his potty where he sits approximately 2 seconds.  He gets up, I clap and cheer and make him proud of doing that few seconds, put on his diaper and move onto the next boy.

I lay Isaac down on my bed.  I begin undressing him and telling him how big of a boy he is and that I know he's going to have fun using the big boy potty like brother did.  After I remove his diaper I say "Isaac you ready to use the big boy potty", to which he looks at me and shakes his head NO and signs "baby boy"... Oh My Goodness, that was one of the best conversations we've had to date!!!  He gets to stay mommy's baby boy another day :)

They both sign daily, for that matter we all sign daily.  They ask specifically for what they want but they never really use it as a conversation.. Today, I felt Isaac communicating with me.. I gently smiled, kissed him and told him that Yes he is mommy's baby boy and put his diaper back on him.

That's my BOY!!