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.

Celiac Disease- "Yes, She's Got It" - Dr. GI

We took Olivia last week to Riley to see a pediatric gastroenterologist because of celiac disease.   This was the first available appointment. Kids with Down syndrome are to be screened for celiac disease between the ages of 2 and 3.  Olivia was screened twice in November and her numbers indicated Celiac disease.  When we were given a copy of her blood test results just prior to going to Indy, we were concerned that her numbers were not just slightly elevated but were significantly elevated.  A bit of shaking in our boots in the days proceeding the doctor appointment.   The GI doctor was very kind and comforting and confirmed that Olivia does indeed have celiac disease and talked to us about the seriousness of having her stay away from gluten in order to avoid intestinal damage.   He also reassured us that a gluten free diet is healthy nutritionally but that he always has new celiac patients see a dietician.  The dietician can help us learn how to keep Olivia away from gluten in hidden ways in processed foods.   Even some grains other than wheat have gluten as the Physical Therapist was reminding me.  We need to educate ourselves (and others who care for Olivia)  fully in order to protect Olivia's small intestine.

We have seen positive results with Olivia off gluten. The pediatrician felt that taking her off gluten in November was a good way to go because Olivia was symptomatic and we had a 2 month wait to see the specialist.  Olivia's strength is the main thing to strike us. The physical therapist could not understand why Olivia was not getting stronger to walk, but within weeks off gluten her strength improved remarkably and she started really walking!  She has taken to amazing us at her endurance to walk long distances and carrying things and walking backwards, dancing and walking on soft mats at therapy.  Her social-ness and bravery has returned also.  It is so nice to see her once again so very friendly when we go out and about.  But I noticed today that I have to keep a very close close eye on her because she sees someone she is interested in visiting with and off she goes in a hurry!  The physical therapist commented today that Olivia has made progress in her walking so much faster than she usually sees in kids who have struggled so much to get to this point. She also agrees that it is the celiac disease that was holding Olivia back.  

So, we do have to avoid gluten for Olivia, but the reward we get is that we have a strong, happy, friendly little girl!  

Tuesday, January 10, 2012

Specs 4 Us

I wanted to share this photo of Olivia sporting her new Specs 4 Us glasses.   Her Fisher Price glasses are history.  They never fit her face correctly because of her flat face and flat nose.  They always slid down and were heavy, uncomfortable and never in the right place to aid her vision for very long.   We had chosen the Fisher Price glasses initially because they are very durable.  So there is value to them if they fit your child correctly.  Our saintly RX Optical girls worked with us to get these glasses for Olivia.  We are very pleased with the fit and have hopes that eventually she will take to wearing them on a regular basis. But just like peeing and pooping, you cannot force a child to wear glasses!  Any person who wears glasses might remember that at first it felt odd to have glasses on their face.  Same for Olivia, and she has no idea how to deal with the weird sensation. But hopefully, over time, she will get used to the feel and enjoy seeing!  
And I love the look of these glasses!  The little Librarian look, just like her Great Grandma B!

Monday, January 2, 2012

Gaining Independence

Since Olivia has started walking, we have noticed so many wonderful changes in Olivia. She loves to walk, walk and walk some more. She has been so happy and full of laughter. She is gaining more and more independence and confidence. She also has developed an adorable "ice-breaker". She puts her hands on either side of her chin to sign "cute", smiles and then starts laughing. Everyone around her, of course, breaks into laughter with her. She gets such a kick out of getting others to laugh and smile. Quintessential Olivia !

Yesterday, we were at a large gathering of Linda's family to celebrate Christmas. Normally, in large group settings Olivia reverts to being a "cling-on" never venturing beyond Mom's protective wing. Yesterday, Olivia would walk away from Mom (yes walk, prior to the last few days Olivia didn't seem to realize she could walk other places than home and therapy), explore a bit, then return to Mom to touch base, and then repeat. She seemed to be having such a good time and was interacting with just about everyone.

Today at physical therapy, she was doing it again. Going across all the way across the room with her therapist, and then coming back to home base. Then Olivia asked to ride on the platform swing - three times. Olivia has always been intrigued by the swing, but refused to be put on it. Today, she looked like she rides on it all the time. The therapist was amazed at how well she was doing with everything. 

We knew all of this would come with time, when she was developmentally ready. But, it was hard when people kept accusing us of being overprotective. We knew she just wasn't ready to spread her wings, and until then we were going to help her feel safe and secure. It was such a joy to watch her fly solo. What a way to start the new year.