Tuesday, February 28, 2012

Kindergarten Transition Meetings have begun.....

Kindergarten Transition Meeting went well today.. Tom and I met with Assistant Special Education Director of our school district, the school psycologist and their preschool teacher.  We went over what level of academics the boys are in Preschool and discussed some of our options. Will have psychologist review their evaluations in depth, we will tour different class room settings and then we will start making some decisions.. They told us today that our final decision will come in May. So we have dipped out toes into the water, lets see if we can swim!!!

And to end on a BRAG!!!!
The school psychologist met with us last year when we decided to hold the boys out for another year.  Through discussions last year we told him about how the boys were beginning to read.  He seemed skeptical so we showed him.  We found out today that he was so very impressed he ran back to Special Education Department to say "You'll never believe what I just saw!!"  THAT PUT A SMILE ON MY FACE. And he totally remembered us just from that demonstrations..

Saturday, February 25, 2012

Day Two.. Self Feeding

Caleb helped me document Day #2

Isaac taking down bowl #2 this morning

Friday, February 24, 2012

Self Feeding Proof

6 1/2 years and one thing that we still work on everyday is feeding.  They are getting better and better but I am honestly thinking that perhaps they are just relying on us to feel them because that is what we have done.

  • Holding sandwiches, getting better but still need hand over hand.
  • Drinking out of a cup, working on it but prefers sippy cups still... no straw drinking yet
  • Stabbing with fork, they still do not get this, but if we load the fork and set it down they pick up and feed themselves.
  • Eating with spoon is almost completely independent (with prompting)
  • Sitting at table and eating without being made to do so.... never!!!
Today Miss Camille is home sick again so I called off the TSS staff for the boys.  So here I am with a sickie and the twins who I have to get ready for preschool this afternoon.  I was trying to get a few things done and they came and signed "cracker".  I told them no cracker, cereal for breakfast.  Each of them shook their head NO but I proceeded to get them a bowl of cereal.  I gave Caleb a choice because he often likes several brands of cereal.  Isaac I dished out the good ole Cheerio's, his cereal of choice.   Caleb picked a brand that I bought for Elijah.  Its a Chocolate Peanut Butter cereal.  I didn't think Caleb would really like it so I dished out a small bowl to try it.  He shoveled it down!!!!  

Isaac took one bite of his and looked at his brothers bowl and pushed his aside and began eating from brothers bowl.  I was amazed!!!!  As I dished out Isaac a bowl and refilled Calebs bowl I walked away from the table to see if eating this cereal had them so involved they would sit there themselves while I washed dishes....  YEPPER!!!!  They sat and ate the first bowl, then signed for more... and ate a second bowl..  This was breakfast.

Then for lunch I asked what they wanted and they both signed cereal.  Well certainly boys, anything for you.  I then stood IN THE KITCHEN and watched them in the dining room sit for an ENTIRE MEAL and eat by themselves..  WoW  WoW  WoW.....

Happy Mama Today!!

Here's Proof:

Monday, February 20, 2012


That is exactly what Isaac signed to me the other day..  He had been signing doctor for three days.. then Friday he signed  Ear...Hurt...Doctor...Please.. How could I NOT call.. He was not showing any signs of an ear infection really.. No fever, not drainage, no fussy kid, BUT I was not going to not listen to  him when he signed something like this.

We headed off to the doctors anxiously waiting to see if he did in fact have an ear infection so that we could Praise God for communication via sign language.  Doctor came in, Isaac was very excited to see her (n-e-v-e-r the case) and I was sure he had an ear infection.  Looked in left ear..no infection.   Looked in right ear..no infection.  Boy was I kinda bummed.  Not that he was not suffering from an ear infection, but that he mis-communicated.

Another issue he was having was the fact that he was very constipated.  Doctor felt his tummy and said we need to do another Miralax cleanse to get him cleaned out.  Then doctor came up with a theory that we are all going with.  She said perhaps Isaac relates the doctor with looking at his ears, so when he signed Ear..Hurt..Doctor..Please, perhaps he was saying his tummy was hurting and he needed to see a doctor that would look at his ears too??!!! Who knows, but I am glad that I took him.  I told him that mommy was happy he could tell me he hurt and needed to see a doctor to make him feel better.  He smiled and then politely asked for Crackers Please...

I LOVE that they are really signing these days.  We get to have conversations with them.  Guess its time to brush up on some new signs and keep the conversations going a little longer!!!

Caleb crowning his brother Isaac king for the day too!!

Wednesday, February 8, 2012

Attitude Adjustment Needed?

“The only disability in life is a bad attitude.” -
 Scott Hamilton

This is a quote to remember and reflect upon.  This quote should be considered by everyone from the small school aged child, to parents like myself, business owners and politicians and well... everyone!  

I made it through my childhood with a neutral to bad attitude, which I feel I was surrounded by.  I remember feeling very negative about many things and I remember not feeling so great about myself.  I often worried about what someone else thought of me and if they liked me or not.  I remember doing things that I might not have felt comfortable doing just for a response or for the attention it brought.  Some days I was a clown, other days I was mean and disrespectful.  I remember my grandma telling me that I needed an major attitude adjustment..  I often wondered what in the world that really meant.

Oh the wisdom of our elders.  If only we would truly hear them and listen to the words.  

I now "am" an elder to my children and what a responsibility it is to teach them to have a good attitude.  I thought that and attitude was a learned behavior.   I thought that by being a positive role model my children would automatically become positive happy children.  I thought...

Today's kids have it so tough.  How do we as parents teach them right from wrong, when there is so much wrong going on in our world and even own communities?  The stress that our children deal with at a much younger age than I did when I was growing up is beyond comprehension.  The internet and all the access these kids have to ungodly issues,  in a sense make these issues acceptable and normal.  They also see BAD ATTITUDES towards everything being voiced in newspapers, on tv, online, in music, everywhere!!!!  How do we.. the "uncool" old parents top the trends of the cool people and what they are doing?

We are raising five children.  All of them beautiful and amazing in their own ways.  Being blessed with identical twin boys who are both non-verbal, have an extra 21st chromosome causing them to have Down Syndrome and dealing with the diagnosis of PDD Autism for them both, I thought I really had an understanding of what a disability really was.  But I think I was wrong.

I did a disability awareness training for a boy scout troop last night.  They had a handsome young fellow who had Down Syndrome in their troop.  I explained what a disability was to them and the first question that I asked the boys was: "Do you know anyone with a disability?" Only half of them raised their hands.  That spoke to me.  The ones that raised their hands were most likely thinking of a family member or had been told that their fellow cub scout had a disability from their parents.  The other boys,  by not raising their hands let me know that this little boy with Down syndrome in their troop was no different than them.  This put a smile on my face.

A disability is a condition or function judged to be significantly impaired relative to the usual standard of an individual or group. 

People with physical or mental disabilities often still have positive attitudes.  This makes those of us without limitations wonder .. How?  Why?  Something that I often hear about people with Down Syndrome  specifically is "Oh they are such happy people", and is that a bad thing?  I would rather be known as someone that is always happy than grumpy.  What a compliment that saying truly is.. How do I go about getting such a compliment for myself or for the rest of my family?

A bad attitude is a decision, as is a positive attitude.  A bad attitude is something that consumes ones thoughts and actions, as is a good attitude.  A bad attitude is contagious much like a good attitude is.  How do we as parents teach this?  I am struggling with this.  I pray about this.  I ask God for wisdom on this.. Now I'm asking you my readers, share some of your wisdom and offer some suggestions?  I think I am getting that slap across the face waking me up saying HEY you have a 14 year old!!!!..  You have to be ready and confident to release her into the world to make her own decisions confidently in the very near future.

My husbands response is he thinks we should become Amish to get away from technology, BUT I have read that they too are adopting technology as acceptable to run businesses, which gives them the same access as we all have... its just everywhere!!!!

People with Disabilities are Broken?

I read an amazing post and had to share.. It made me think in ways I don't think I have ever thought.  Especially the words "Although they might seem broken, they instead show us the brokenness of our own hearts."  What an amazing life God has called the Stumbo family to.  I thank them for blogging as they do and sharing their story.  I have read this blog for a long time, but this one brought tears to my eyes, (Click words to read entire blog post):

I have a burning passion to see the church embrace people with disabilities. Although they might seem broken, they instead show us the brokenness of our own hearts. Our churches need them, we all need them. There is great freedom and beauty when we find ourselves surrounded by a group of people that loves unconditionally, gives freely, and worships with no restrain. It allows the rest of us to do the same as we look at them and learn from them how to come before the Lord. We can come as we are, with no pretense, no holding back, just us, with all our brokenness and garbage. What a beautiful Healing Community we can become, what great beauty is found in the middle of those with disabilities, among my people.

Tuesday, February 7, 2012

Change of Plans.... I am Blessed

Today as I awoke knowing that I would be cancelling services for the boys and calling the preschool to let them know they would not be coming today due to some tummy troubles that began in the middle of the night, I realized....WOW am I ever blessed to be able to just throw my arms up in the air and say oh well Change of Plans for today.

I am blessed to have a husband who works so very very hard under stressful circumstances to keep his family fed and dressed.  I am blessed to have the opportunity to work from home around our crazy busy life and feel like I am making a difference in some small way.  I am blessed to know and love the Lord and continually ask him for wisdom and guidance as I live my life trying to figure out how to raise five children, all so very different, and all so very challenging and even more rewarding at the end of each day.  Figuring out Autism and Down Syndrome.  Realizing that the twins may never talk and praying that I will be ok with that.  Knowing that each day that passes is another day closer to when my kids will be grown and out on their own, a thought that makes me sick.

On that very note, I have been seriously having little panic attacks when I see my beautiful daughter Tristin who is 14... FOURTEEN and a HALF really!!!! WoW she is so beautiful, has an amazing personality (when she is not glued to her iPod), her artistic talent is a money maker, and she is in that teenage funk where mom is NOT allowed to say I love you or offer a hug.. Boy does that hurt :(  I remember being like that to my mother... I was like that for a long time.  I guess I really didn't realize how much I was hurting her, even though that was part of the intention.  Its so hard growing up and being right at the place where you want so badly to be treated as an adult yet still just at this age where you are just now allowed to watch PG-13 movies and hang out with friends (with adult supervision).  When will I as a parent feel like I can let go a little in this world today, with all its bad outweighing the good most days?

I have had so many things on my mind these days.. I am weeks away from signing up the twins for kindergarten.   That was my major Change of Plans last year.. I was going to register them, then I didn't.  Now its almost here again and I wonder if I am ready to let them go...  I will, they are ready.  I just have that big mama bear feeling to protect them and not having the control to do that in a public school setting.

And so I go again to prayer, asking the Lord for guidance with my decisions, that my parenting journey will bear fruit for my children's decisions  in the future.  Its such a responsibility to raise these little people who grow up to be accountable adults.  I feel blessed to have been given such a task, but somedays nervous that I am not stepping up to the plate or thinking of all the outcome possibilities for each decision.

Proverbs - Chapter 6:20-23 ( taken from the Holy Bible, New Living Translation ©. Copyright © 1996, by Tyndale Chariatable Trust)
20. My son, obey your father's commands, and don't neglect your mother's teaching.
21. Keep their words always in your heart. Tie them around your neck.
22. Wherever you walk, their counsel can lead you. When you sleep, they will protect you. When you wake up in the morning, they will advise you.
23. For these commands and this teaching are a lamp to light the way ahead of you.