Down syndrome and combined hearing loss with vision

For Tommy's first year of life he had a combined hearing loss and delayed visual maturation.  It wasn't until he was nearly two years old that both were corrected to the point that he was seeing and hearing within normal ranges for his age.

The processing of that vision and hearing has needed some catch up time.

We have been blessed with working with Wa State Sensory Disabilities Services.  This is taken from a recent observation of Tommy within his sweet preschool environment.   I thought it would be helpful for my extended family to see where he is in language development and how he favors, slowly, sign language. 

Observations: Tommy cooperated with the morning routines, followed one- step directions when spoken and signed, engaged in building blocks, drawing, circle time and large motor activities for 5-10 minutes at a time. A big improvement from last year! Tommy initiated communication with different teaching staff during the morning: Examples of communication skills included:
• Getting adults’ attention by vocalizing or gesturing and thensigning or gesturing for what he wanted
• Establishing eye contact
• Spontaneously signed EAT, CRACKER, HERE, MUSIC, BLOCK, SPIDER, HAPPY, MORE PLEASE, MORE CRACKER.
• He vocalized with the sounds “ba ba,” “buh buh,” “da da,” “ha ha,” and imitated a mouth movement the teacher made.
• Chose a snack by selecting from pictures offered

 

Discussion:
• Vision and Hearing updates. Sandi reports that Tommy’s hearing evaluation reveals with PE tubes, his hearing is within normal limits. His original diagnosis of “delayed visual maturity” no longer applies, according to Sandi’s summary of his vision test. This means he continues to develop visual skills and that he has access to sound, even if he is delayed in attaching meaning to speech sounds.
From classroom records, he consistently understands about 40+ signs and regularly uses 15+ signs which is age appropriate  for 36-60 month for interaction, vocabulary, grammar and speech. 
Research shows that printed words (that the child already understands but doesn't say yet) may be helpful for learning speech, for children with Down syndrome
Use of pictures, and "experience books" may be a way to build vocabulary at home and at school
 
So, I'm off to get a laminator machine (or use Amy's) and make pictures with sight words for familiar objects at home that he can then use to request.  This was INVALUABLE feedback.  And although VERY specific to Tommy, I wanted to share his progress and some ideas on how to continue on from this point.

Duo learns to swim!

Last night was the first swim lesson for the dynamic duo.  They were EXCITED!  We don't have a swimming pool in our town so we drive to Bellingham and enjoy their BIG pool center.  The duo are in the small pool which has a graduated ramp to get in and little ropes to divide the pool into the two classes that use it. 

I had NO idea what was going to happen with Tommy.  My son usually loves water, but the loud environment and chaos *might* have been enough to send him over the edge.  But both boys did terrific.  The center wanted me in the pool with Tommy to be his 'aide' which sounded great over the phone and in the water it worked terrifically.  I did everything the instructor did, used sign for Tommy so he could use the signs back to me and the instructor.  Wow.  Impressed.  Both boys:

• put their faces in the water
• sat on the wall
• waited for the instructor to say "your turn" then slid their bum into her
• introduced themselves to their classmates (  "I LIAM"  and Tommy used his name sign a "T" to his mouth)
• walked the width of the pool in the water using their scooping hand movements back and forth
• assisted back float (not pretty for Tommy but he did it)
• JUMPED from the side of the pool in a standing position to the instructor
• walked the width of the pool blowing bubbles in the water (Tommy just had his chin in the water, no bubble)
• sang lots of songs
• sat on the wall and kicked their feet making big splashes

This is Preschool level 1 and age appropriate for them.  After the class the instructor and I talked, I wanted her feedback if we were too labor intensive (I'm being honest).  She observed Liam doing everything, and said Tommy tried or did everything also.  She said it was the perfect class for them and as long as I could be with Tommy it would work great.  Whew.  Good.  Except for me in a bathing suit.  And the fact that I came straight from work and daddy forgot their post swimming clothes.  And it was hailing.  Next class is tomorrow and we hope to get there a little early to view the adaptive swimming program and see if that would be a nice addition for Tommy.

Swimming is so important.  A skill to have in the northwest for sure!  Hannah and Nate learned to swim at very young ages and Hannah competitively swam for Bellingham Bay swim club for two summers.  I have terrific memories of many years of swim class that my parents religiously took us to.  Hope the dynamic duo will enjoy years of swimming instruction too.... and we will keep in fun!

School is in session

Yesterday started with a meeting that we had requested with one of our favorite state agencies "Washington Sensory and Disability services" and our wonderful preschool class to see *if* we are on track with meeting Tommy's needs for learning styles, environment, sensory issues and just also to talk about the next year.

K, the consultant from the state spent two hours observing Tommy and how we accessed his education thru the multi modes that the preschool has.  He is four now and still non-verbal, so he uses the picture system and sign and lots of vocalization/wiggley bum/pointing to get his needs met within the classroom.  Tommy has been very fortunate to have what feels like, although technically never said, an aide that signs. 

The summary from K and the preschool teachers was very positive and focused on all types of resources for Tommy to increase his language (sign, picture, verbal) to 100 words and then over the next year to 300 words.  His chewing and licking was addressed a bit also which gave me lots of ideas on how to meet his sensory seeking in that area (literally he is chewing clothing and licking most smooth surfaces, gross). 

Even though I teared up a couple of times realizing some of his abilities are still around 18 month, the meeting was fantastic and I'm amazed at the skill sets of the preschool teachers and the consultant.  God has placed such wonderful people in our path and they love Tommy just as much as we do!  I've decided to post Tommy's IEP, the consultant's report plus a summary of a bibliography I was given on resources for language for kids with Ds.... soon. 

The afternoon included a phone meeting with Hannah and Nate's high school counselor.  Heavy sigh.  I have been fighting a battle with the HS to get Nate's semester grades to include his prior work at the private school.  A long battle.  And yesterday it was confirmed that I had less than a 1% chance of success in getting the teachers to include his prior school work.  Makes no sense.  So, his grades reflect a kid lost within a HS paperwork system and not one of a kid's progress, aptitude and skills.  I also asked the school to meet with Nate because he wants to adjust one of his classes and again they were stuck within their 'system' of protocols.  Grrr.  We also spoke about SAT and ACT testing for both of them in preparation for college applications.  I apologized for my grouchiness in much of the latest emails and in person meetings, and the counselor shared that I'm fighting *really* hard for my kids, and although uncomfortable for all, it's out of love and they realize that.  They are just paralyzed within systems.  We closed the conversation talking about substance abuse counseling and that has been going well, so I believe he is on track for growing some adult life long skills in that area that has been slightly tough (very minor type of substances though). 

And one piece of good news came in the mail, Tommy is requalified for DD services thru our State!  At age four he was dropped from the program because I didn't do 'something' with 'paper' 'you should have received'.  So I spent a lunch hour and two dollars in parking meter to share with the state that "HE STILL HAS DOWN SYNDROME".  Sent paperwork to my doctor.  And he is requalified.  Yippee!  I love a good ending. 

Today it's off to work and frigid temperatures and it's Friday!  Enjoy your weekend. 

Say Cheese!

I had the opportunity to treat my sister Tami (very pregnant) and my mom to a cheese making afternoon class for their birthdays.  We ate, laughed, talked and learned to make soft and hard goat cheeses.  Because one of us has a goat, yes that would be me.  Here is Tami to the right and our wonderful cheese making teacher Kristy.  My sister has a soft cheese hanging.

Kristy had already made a hard parmesan, and a pressed cheddar which both needed to age for about nine months (hmm sounds like a pregnancy).  We enjoyed both of those cheeses and lots of other goodies while Kristy taught us the chemistry behind the recipes.  Yummy coffee and tasty wine and lots of cheeses.

My mom had a good time.  I just absolutely love seeing her, only wish it was more often.  We always have a good time together. 

And here is my sister Tami's belly, she loves to show off her second little boy, they are naming him Maxwell.  I think he liked sampling the cheeses too!

After the class I decided the parmesan cheese and the brined feta cheese would be my first attempts.  I am so excited for spring to get her and my goat to freshen, once we have goat milk again.... I'm making cheese!

Lately

 Four of us had dental appts these past two days.  Liam got to sit in the big chair and was such a pro at the water/suction task.   All four of us had no cavities.   Tommy and Liam see a pediatric specialty dentist and she has been part of our team for awhile now, like three years or so.  She is a huge Tommy lover, and Liam too.  We shared hugs and reminisced for awhile, it's so nice to see her twice a year, she is a great dentist.

Hannah turned 17!  She is in the middle of her friends Tessa and Alyssa.  We had numerous dinners and treats and just plain fun.  She is bright, beautiful, athletic and very outgoing, I'm so happy to call her my daughter. 

Valentines day for the preschool teachers included little apple shaped hand sanitizers.  The smell was terrific and I thought during these winter flu-ish months it was thoughtful.  Colin and I got to spend awhile in the preschool room on Friday and were just so impressed with how Tommy and Liam both engage with their teachers, SLP and OT.  They move thru each of the activities with a quiet confidence now and have shown so much growth.  Their preschool teacher is the best!

Thick

Ever feel like you just crawled thru thorny blackberry bushes?  I mean the type of blackberries that have long thorns on them?  Army crawling your way thru blackberry bushes in the dark.  Not knowing if, or when, the end would be in sight?  Ever get to the other side of those blackberries and feel like curling up in a fetal position and just suck your thumb for a while?  Like forever?  Heavy sigh, that's what it feels like for me navigating issues in the last six months of mental health, substance abuse, medical, work, amazing tiredeness, high school struggles and the list could go on but I'm sure you have a list too and don't really want to read mine!  Recently, I find myself eeking out the "other" side of the thorniest blackberry bushes and noticed that I might feel a bit stronger.  A bit more confident.  A bit more of a momma bear than when I had to get into the army crawl and navigate thru the dark bushes that leave you scratched and bleeding.  A bit better as a human being?  If that bit is even the smallest measure of an improved skill set. 

I never thought I would be "that mom" who had "these issues" but here I am.  And my kids are fine.  Actually, they are better than fine they are doing really well.  Each developing so uniquely and beautifully in his or her own way at their own pace and amazingly taking accountability.  After spending hours with professionals and making the efforts needed we have plans for the next six months and will take all of our issues one day at a time.  Because that's how we made it thru the thorniest parts, just focusing on what was in front of us at the time.  And enjoying the beauty along the way. 

Do orphans NEED to be saved?

As we continue to discuss within the confines of our own home, our hopes and dreams of someday, in someway, somehow, adopting.... it's posts like this that inform and weigh on our hearts.  Especially the part titled "reality is a weighty thing".

http://www.rageagainsttheminivan.com/2010/10/do-orphans-need-saving.html