Saturday, August 30, 2008

August in review #3 - therapies, special needs

 We had a full schedule of therapies.  We met with our speech therapist and case worker to discuss options for Eliana.  I'm considering using a program called Boardmaker or Overboard to enhance her communication skills.  It's basically using picture cards to communicate words and ideas that can't yet be spoken.  This would be in addition to using signs as well as verbal communication.  If anyone has feedback, I would love to hear it!

Physical therapy continues to be a struggle.  Eliana needs to work on strengthening her muscles to be able to walk better.  She is walking more and more - which is exciting.  She walks though with a wide gait and somewhat stiff legs - cute, but not the best for her long-term. 

Although when we met with her ped this week, she was pleased with her walk as she thought she needed the stability of a wider gait.  Hmmm...  I am thinking she will figure it out eventually - and probably with a little work from her therapist.  She is doing well in terms of her health and growth.  She is still on the traditional growth curve (ped seems pleased and a little surprised by this).  She is about 10th percentile for weight (21 pounds 6 ounces) and 25th percentile for height (31 inches).  This is for the standard growth chart which is very surprising.  For those that don't know, children with Down syndrome are typically smaller and even have their own growth chart. 

One note on a success this week in terms of Daniel's sensory issues.  When we were at the park, he came up to me crying because someone had poured sand on his head and down his back.  The sand had gone down his shirt and a little into his pants.  I was not surprised that he was upset.  I talked with him calmly and just brushed it all off.  He stopped crying and then went off to play.  This was a wonderful step for him!!!  At times something like this would just make him melt and getting over it would take a looooong time.  So, another YIPPEE for Daniel!

Here's the funny part of that story.  I asked him later what had happened.  I was curious since I hadn't seen it.  He told me that some boys were following him and following him before the sand was dumped.  I asked him why they were following him (wondering if it was a game) and he said with a funny little smile, "Because they like me".  I'm love that he sees no malice - just someone that likes him.

As an added part of our work with Daniel, his therapist thinks that he may benefit from speech therapy as well.  Eliana's therapist evaluated him briefly and informally and agreed.  His ability to sustain breaths and his vocal quality were some of the issues.  She also thought he might need to be seen by an ENT to assess if he has problems with his tonsils and adenoids (he sounds a little nasally).  He has never been checked for his as he has never had an ear infection which would have led to an examination.  I'm thankful to have an ENT that I trust.   I'm also thankful to have a great speech therapist on our team as well.  I will admit that I'm not thrilled about adding more therapy to our week, but very thankful that it can be done in our home.  I'm obviously thankful that we can get Daniel the help that he needs and we hope this will be a short term need.

I attended a special needs conference locally and found help and encouragment in most of the information there.  Some of it was also overwhelming and felt like a firehose of information - things I "should do".  I know that it's easy for all moms to feel guilt about the things that they should be doing or wish that they were doing.  For me, having a special needs child has added even more to that plate.  I wonder if she will somehow fall behind or not get something because of my failures.  I know that this is a common feeling from talking with other moms.  It's something I work to hand over to God.  I know I can't do it all.  I can only try my best and leave the rest to Him.  Easier said than done at some times.  

Lastly, I was able to attend a Mom's night out with our local Down syndrome group.  It was fun and I'm grateful to my family for working it out so I could go.  It was nice to be with other moms and ask questions, talk, share and laugh.  It helps to learn from others and I'm thankful to have this support.

Wow, this is world in which I never thought I'd be a part.  We've done therapies in the past, but just short-term for speech.  I'm so thankful to live in a place where we have access to so many resources to help our special little people.  I'm also very thankful to have special little people in my life!  It is a blessing!  Truly it is!