Saturday, September 22, 2012

Thinking about blogging again

Where have we been for the past several months?

Playing ball of course!

Well, no not exclusively, but life got a bit hectic and I decided that something had to go, and it was blogging. As I think of October rolling around, I thought maybe I should give blogging a go again because it is Down syndrome Awareness Month and perhaps I have some things to share about the joys of being a parent to a wonderful child with Ds.

Olivia's favorite thing to do is play ball.  In July,  at just over 3 years old, she became an awesome ball catcher. I spend hour upon hour throwing balls to her so she can catch. She also is a great basket shooter!  I have to chuckle, because neither my husband nor myself are ball players.  But I guess we are going to learn a few things! I have to admit, it is really fun playing ball!  And I can be quite the coach!

Life can get a bit overwhelming sometimes, but Olivia is always the bright spot in any day!

I am really out of the blogging mode. So I will stop for now and hopefully blog again soon!

Saturday, February 4, 2012

Children's Museum

Now that Olivia is walking EVERYWHERE!  we are beginning to check out GREAT places for kids.  This is the Center for History in South Bend. 
Olivia had a great time exploring and walking everywhere.
I think that right now she just loves wide open spaces to walk.

Olivia kept asking for the swing, which she loves riding on at physical therapy. She must have thought this was a new therapy place.

Thursday, February 2, 2012

Old and New Photos

These are some old photos that I found on my iPhone

Taken this summer:  Olivia likes to look at her books.

Summer 2011:  Hard to believe that pulling to standing and standing against her  bar were a real task at that point.

Summer 2011:
Olivia's first success at standing independently came from propping on this  slide  then pushing herself to stand.

Summer 2011: Loved her long walks in her stroller

All Smiles!

Our favorite place to walk.  The new section of the River Walk



Olivia is a good tooth brusher!   


Dr Seuss and IPad.  All is right with the World!

Catching  a few ZZZs

Messy play!!!!



Taking a break at Therapy

Grocery Shopping with Mommy

Walking outside

Walking Outside


I got the box and helped myself!

Yummy yummy cereal!

Thursday, January 26, 2012

Water, Pom poms and Puppy

I am giving Olivia a chance to practice sponge squeezing.  She is not too good at squeezing, but  she is improving. This is such an easy activity for typical two year olds.  I was surprised how even squeezing a sponge has to be taught with great effort  and even this is a sensory issue. But she is making progress.  The OT is so impressed with the progress I have made with Olivia in her Sensory Processing Disorder in the past year.  I work really hard at it!  Nice to hear the compliment from the OT.  The PT has commented about how great I have done at getting Olivia to be more outgoing and social and adventuresome.  Again.  It seems that we special needs moms get so much criticism even though we work so hard, so when I get the rare compliment it means so much and keeps me fueled. This has been a tough week with my husband in the hospital with an ulcer.  I kept life even keel and happy and productive for Olivia in the midst of my worry. Of course only to hear criticism.   I have had many conversations with Adoptive Moms of kids with Ds.  We all have the same reason for adopting:  A call from God.  We really cannot explain it, but once God planted the idea in our heads we could not rest until we had that special child in our arms.  It is not easy raising  a child with Ds, but we hear that whisper of God saying YES this is my will for you.  One mom told me before we adopted that we would receive much praise and much criticism for adopting a child with Ds.  And it is true, It is still hard to hear the criticism, but I know that God's will is more important than the critics.  This Sunday my parents are going on a walk to support life. My husband and I feel that we have to defend life with our very lives.  I think that was part of God's calling to us. Don't just say you value life.  Raise one of my very special children!
This is one way that I set up the sponge work.  Bowl with a bit of water.  Small sponges and Elmo to entice her to stay focused and she will wash him too.   Elmo is a big motivator.   We know that our special needs kids need their motivators!!!!  Once we found that Elmo motivated Olivia, we were able to get her to do so many things we were struggling with before!  I wonder if we could open up our home study again and proceed to adopt Elmo!  

Again with a Sensory activity.  The Pom Poms are great!  They have also motivated her to practice pouring and another grasp release activity.  But we cannot leave them out unattended as she will put them in her mouth if no one is watching.      

This Fisher Price Puppy has been her time tested favorite toy from Christmas. Grandma and Grandpa B hit the nail on the head with this one!  It is so motivating to get her to move and dance and clap and  move up and down etc!  Her OT uses this toy and it has been great to own one ourselves.  Olivia is still perfecting her walking skills so anything that motivates her to practice is awesome!

Olivia has finally mastered crawling up on to the sofa and turning around to sit then getting onto her tummy to get herself down safely.  Again! I worked so hard on this one.  It is a joy and celebration every time I see her do it! We work so hard for everything that we really appreciate it when we get it!   I  love the evenings when we can sit on the sofa and she brings us books and climbs up so we can read to her.  Now that Daddy is safely home we can hope to have our missed family time back again.  It has been so sad to have Daddy gone. It is the little things I missed when he was gone.  I missed having him hold hands with us when we prayed, sitting and reading with us, dancing with us,  group hugs, family time getting Olivia into the bath and kissing good night.  So nice to know Daddy is under our roof where I can take care of him and kiss and hug him and know he is ok.  I really missed him.  I can handle keeping life going.  But I really missed the little things of having my husband home!!!!! Stay well sweetie!!! I love you!!!!!  I miss your presence so much when you are away.  Love you!!!!!!

Tuesday, January 17, 2012

Life at Indoors in January

We think it is time to get out the ball tent again.  Olivia has been playing with all of her balls again. 
All 250 of them!  The nice thing is that she keeps herself occupied playing and experimenting with them for long periods of time.  

 We are working on blue and red these days.   We are following the advice of so many who have worked with kids with Ds and presenting words early in her life.  There are words she clearly recognizes like bear, ball and Elmo.  She LOVES her cards with words and those she walks off with a happy grin so pleased that she has this wonderful prize!  A word!  She also is learning the sounds of letters.  We use the bathtub stick to the tub letters when I teach them.  She loves to hold an O or U and say the sound.  I have tried sandpaper letters with her but her hand and fingers still just go very limp and she is very uninterested.

 Olivia is working on wearing her glasses more often.

Olivia is a very happy child. (Except when she is not)

Another example of wearing her glasses in daily life.

We noted that we own the same Potty Seat as Elmo in Elmos Potty Time. We just now are watching this DVD and gearing up for the big event!  She very quickly was excited to learn that Elmo uses the Potty and immediately looked at me and excitedly signed Potty!  She now knows that even cool "people" like Elmo use the potty not just boring parents.  She has been having fun with sitting Elmo on this potty seat. She let me set her on the closed big toilet while she was fully clothed.  She has tended to be so cautious about new things that I just want to gear up slowly and get her used to the language and the various potties that we own around the house so that we don't start trying to train when she is scared of them.  I am reading up on the best methods for training a child with Down syndrome.  If anyone who has trained a child with Ds has any suggestions please pass along your experience.  I am hoping that the bravery I am seeing in Olivia in walking will carry over to potty training.  I have potty trained typical kids when I taught, but never a child with Ds.  

Down syndrome Medical guidelines

A comment led me to think that I should join the bloggers who have posted the link to the Medical Guidelines for people with Down syndrome.  Hopefully if you click on that it will take you to the right place.

Olivia sees a young female pediatrician who tells us that she reviews the guidelines prior to her appointments with Olivia to be certain she is keeping up on sound preventative care for Olivia.  At Olivia's 2 1/2 year old check up, her doctor said that it was time to screen for celiac disease.  The gastroenterologist said that indeed it was time to screen but that doctors have to be careful in reading the results and knowing which tests to run because there are some of the tests that would not usually come back positive in a young child with celiac but would come back positive in an adult with celiac.  The tests that always come back positive if a child has celiac came back significantly elevated for Olivia.  The tricky thing is that if these tests come back negative that doesn't tell you much, because there is a high rate of false negatives.  Olivia had positives so that made diagnosis clearly celiac disease.  If your child is symptomatic of celiac then most definitely test!

We have heard that not all doctors are very good about making certain that they follow that guidelines and that parents need to know the guidelines, give their doctor a copy and keep making sure that the doctor is following them.

Monday, January 16, 2012

A Visit to Sister V

It was such a joy to see Olivia walking at the Center (Motherhouse in Tipton)!  She has not been willing to walk freely outside of home or therapy.   But as soon as we arrived in Tipton  I told her we were at Sr V's house and she took off walking.   
 She did so great walking up and down the halls!   She also was being very friendly.   She used to be friendly, but then this summer she got shy.   Now she breaks the ice by signing CUTE and then laughing.  Then she was showing off some of her other signs especially doing bunny ears for rabbit.   In the dining room she kept signing window so that I would take her to watch the snow falling.   Stopping at tipton was a real blessing on our trip.