Saturday, May 28

Preschool makes learning fun

Here is a glimpse into the Preschool program that Tommy and Liam attend.  Tommy has been slowly (ahem very slowly) learning sign language, the pecs picture system for making choices and just any form of communicaiton.  So I went to preschool again to watch specifically for ways I can be more consistant at home with what they are teaching him in preschool.  These teachers are so gifted with special education and the amazing unique ways to tailor education and access to education to each of these unique little people. 

Tommy's aide (not officially his own aide but realistically and honestly) L is reading with him a book on colors.  She signs the color for him with her right hand and often Tommy was using hand under hand to feel her signing the colors.  We all share the interest in Tommy communicating something, anything, and colors seem a great place to start.  He could choose "the red one" or the "orange one" to distinguish toys or blankets,etc.  Hand under hand signing is Tommy's mode of learning.  He "turns off" if you grab his hand to force or manipulate it into a sign.  L is *so* loved by Tommy. 

The morning preschool routine has a sweet circle time and part of the tasks of that opening time are for the designated child of that day to go outside and look at the weather with the binoculars and report back to the class.  So cute!!  So here is Tommy outside with his SLP looking at the weather with his binoculars.  You can almost see in this picture he has a specialized pressure vest on.  The team has been trying this to give Tommy's body a bit more sensory information (remember he is a sensory seeker and gypsy) and to satisfy those needs so he can sit still during the activities and better access his education.  And it seemed to work great.  Although I'm going to get a light weight one thru Spio because this one was a sauna for him and he doesn't like being warm because he falls asleep when warm.  But back to the story of the weather... Tommy came back in and his SLP said and signed cloudy and rainy (gotta love the pacific northwest).

After circle time the kids are each given a colored ticket and separated and can move thru the different activities.  Today there was a ratio of four of the teachers on the team to 8 kids.  Each teacher/para educator had a separate activity and the kids were sent to their tables by the colored ticket they held in their hand.  Tommy LOVES the snack activity.  He has his specialized chair that travels to each activity with him to help support his core and legs so that he doesn't need to work to sit on the chair and can rather attend to the learning activity.  MMMM.  Pretzels (mommy learned the sign for pretzel and won't sign cracker for them anymore) and he gets his 4 oz of milk in his gtube at this activity.

Liam was in a different group of kids and this is his picture at the SLP's activity table working on sequencing a puzzle story and then talking about it.  The activity really sparked thoughts in Liam and lots of conversations about the beginning, middle and end of the story.  Mommy note, I need to go to Launching Success our local schooling store and get one of these games because it was very interactive for Liam.  I tried to exclude other kids from these photos, but if you have another child in the morning preschool room, your kids are ALL so cute and it was hard for me not to hug a few of them (K your lil S is so stinkin cute we have to do a playdate soon on your new swingset).

When Tommy in his group got around to the SLP's table activity you can see how the teacher changed the fun to more appropriately meet Tommy where he is.  Working on colors!  And spark with his natural boy interest of BALLS!  So they signed and said the color and Tommy played and played.  He also had the opportunity to work his fine motor skills and separate his pointer finger to press on one of the releases of the ball machine (worked in a little OT).  And, drum roll please..... he signed RED appropriately and self initiated (Tommy doesn't initiate many signs, if any).  I've got a video of this and will post soon, because at 4 1/2 years old for a non verbal kid, this is a mommy's PROUD momment. 
Another activity table was working on finger isolation (pointer and other fingers) with KoolAid scented playdough.  I noticed here that he LOVED the sensory input of the playdough, stuck golf tees in it, pointed with his isolated finger in it and rolled and rolled.  The earlier activity at this table was in relation to their week study on the VERY Hungry catepillar and they made a butterfly out of paper, clothespin and pipe cleaner.  He didn't like having L's hands over his and manipulating, although L was trying her best to get him to do the activity and Tommy was so stubborn about it.  I've got to remember to make more playdough for home!

After circle time and the activity tables, then there is puzzle time and book reading.  Here is the chance for toileting too with the aide one on one.  And then the morning is wrapped up with a very sweet circle time of learning each other's names and singing songs and more book reading. 

Both of the twins LOVE wooden puzzles.  So I'm going to reorganize our home school stuff so the wooden puzzles are more accessible.  Too cute!

Tuesday, May 24

Your road will be made smooth for you by good friends

I was asked to write a short article for our local parent-2-parent newsletter on a 'parent's perspective'.  No theme, no question for the essay, just write on your perspective.  So.... this is what I sent and thought I would share with all my virtual friends too. 

At lunch today, the piece of paper in my fortune cookie said, “Your road will be made smooth for you by good friends”. Wow. I had to read it twice. The second time I co uld smile to myself and reflect on how true that statement has been for me and my family.

And although the fortune didn’t say “my road will disappear completely”, nor did it say “I would begin to happily float on a carpet ride under blue skies down the road”, I was happy to remember how much smoother this road was with good friends.

Our son Tommy has multiple diagnoses. He has Hirschsprung’s disease, Down syndrome, and has Polysaccaride antibody deficiency syndrome. With permanent pulmonary daily care and g-tube feedings for liquids, he is thriving now. He is an open heart surgery survivor and has lost nearly a third of his bowels in a pull-thru surgery. He has outgrown delayed visual maturation and hearing loss issues. He is truly a champion. His diagnoses don’t define him, as all reading this already know. We love him to pieces. His current nicknames include Nugget and Sugar Cube.

We feel his blessing to us has added a depth to our family and to each of us as individuals that is unique. So strongly bonding each of us to one another and to him. And yet we are on a road. The road of raising our son with special healthcare needs. Somedays it feels we are alone and isolated. But that’s just about the time we reach out to friends with honesty about our feelings and needs.

Nearly five years of traveling this road with my family has been difficult at times. Joyful often. And tragic to the point of our son almost dying three times. Elated with his developmental accomplishments. Scary on many occasions with medical procedures. Stressful. Bumpy. A life lived in the extremes of dark stress and sheer bright happiness.

The travels along this road have been refreshed thru friendships. The enjoyment of a dinner dropped by after a long hospital stay or a phone call to check in or an email just saying “I’m thinking of you”. Reading blogs of other families similar to ours, and the friendships that develop, either close by or far away inspires and encourages our family. And makes our road just a bit smoother. Hearing friends talk about solutions to sleep issues for children like Tommy who don’t really sleep much, or how to swim at the aquatic center with a G-tube, or hearing a friend explain for the tenth time how Hirschsprung’s disease really never is fixed. Sharing experiences, friendship thru common bonds and exchanging small pearls of wisdom make the road smooth.

Friendships include the harder conversations that good friends bring. Of “why don’t you step away and find some time to self care and reenergize?” Or, “have you called Medicaid eligibility yet”. Or “perhaps you might find some mental health help and a new set of coping skills by seeing a counselor”. All actual conversations started by my friends and the outcomes of all have made our road so much smoother.

Good friends to me, as a parent of a child with special healthcare needs, look slightly different now then five years ago when we received a prenatal diagnosis. Gone are the days of flexibility and spontaneity. Here to stay are the friends that understand even well made plans for an afternoon out can get tabled when Tommy is ill and he wants only mommy. Good friends last the lifetime of the road. And we are overjoyed he has a lifetime.

When a friend asks “what can I do”. I am ready with just one thing that might make our road smoother. For a few years, in the beginning, I told friends I didn’t need their help. Almost because not having a conversation was easier then, but now I realize how much better we are by talking things out rather than avoiding issues and needs. Now when they ask, I realize they are asking because they care about my family and want me to let them help us. I always have one thing ready in my mind. Sometimes it’s a small chore. Help fold our laundry and we can talk. Maybe a cup of coffee. Maybe asking for a dinner to be dropped off sometime. Help me reorganize Tommy’s medical cabinet. Other times it’s talking on the phone about normal issues, not the extremes, and exchanging encouragement. Sometimes it’s talking about the ugly extremes and getting constructive feedback, as hard as that is sometimes to hear. Even if to only tell a friend, just keep calling me. Our road is made smoother.

Shared by Sandi McMillan, married to Colin and momma to Hannah, Nathan, Thomas and Liam

Friday, May 20

Grief (again) and lots of Grace, what a week!

A full week of activities for our family and lots going on this weekend.

Teenagers are always busy!   Hannah has been working at our local Dairy Queen plus keeping up on High School, Running Start, cheerleading and gymnastics.  Nate was offered two small jobs this week, yard work plus being a super sitter for our DsO picinic this weekend.  He is registering for full time Running Start for the fall (just finished his testing).  He is taking driver's ed now three nights a week, plus keeping up on his high school classes.  I'm a tad envious that he gets to sail tonight on a 43 foot boat and camp at a gorgeous island here in the San Juans with a friend and his family.  The weather and water will be a great treat for him.

Tommy and Liam have been busy too, not to be outdone by their older siblings.  Liam is in T-ball a few nights a week and is enjoying preschool lots and the sunshine which means he is outdoors always.  Tommy is healthy again, a little cranky though with his teachers and me, but busy at the Arc membership pizza feed and it was so sweet how the older people with disabilities just LOVE to see him and love on him a bit. 

Colin has been hitting the gym this week, plus work and caught up on a few outside projects.  We really enjoyed celebrating our nieces birthday this week at her pool party (she is 6 now) and Colin helped out tons with the duo.  We will be setting up and helping at our local Down syndrome picinic this weekend which will be lots of fun and Colin enjoys meeting other dads.

I've been kept busy with work, children, housework, farming (our dairy goat has gone pro again with milking so soon there will be cheese) and trying to figure out schooling for the small crew for the fall.  The preschool staff at our local intervention preschool have been wonderful.  Absolutely supportive.  But I have really been caught in the grief cycle again at an inopportune time.  Right smack dab at the beginning of a school meeting with his preschool team plus an instructor from our local university who was there to access Tommy's communicative needs in terms of using an assistive device.  Tommy's very favorite aide was 'pushing him' a bit that day to make choices using the pecs to communicate and well he got really frustrated and punched her in the face.  Grrr.  And when I heard that my heart just sunk back into that old friend grief and I couldn't stop the tears.  For hours.  The preschool team does such a fantastic job with Tommy and always, always has his best interest at heart.  But Tommy is just so frustrated and trapped within his non signing, non verbal, barely using pecs body of a sweet self.  So, hopefully the grant we received to fund a portion of an ipad will be the answer.  The key.  The interesting and spark that Tommy needs to become interested in communicating. 

I've been given tons of grace this week.  Truely each day this week has been an amazing journey in itself and such a great week with friends and family.  I tell myself I can do this.  My family can do this.  We will all make it thru this phase of learning Tommy's communication needs and however it looks in the end will be just right for him.  I've learned a new kind of patience.  Perserverance.  Salted and peppered with grace.

Monday, May 16

Down syndrome spring fling picinic

If you are local to Whatcom County and have a child or adult with Down syndrome, come join us at the annual potluck picnic!
Down syndrome outreach of Whatcom County is having a SPRING FLING POTLUCK, MAY 22ND (noon-3pm) at Bellingham’s Fairhaven Park (107 Chuckanut Drive). (rsvp 715-0170, extension 205 or
There will be hempler hot dogs, games and activities for all ages.  Super sitters will lend a hand with little ones and to give you time to meet other parents. See ya there!

Lip smacking good

Tommy is officially well into "operation G-tube weaning".

His favorite drink of choice continues to be chocolate milk.  Although last night with dinner he drank apple juice (mixed with water).  I might even try some strawberry flavored milk and some milkshakes today and tomorrow.

We see the nutritionist this Friday to develop a plan for the weaning, which is a rescheduled appt from a few weeks ago.  But this weekend I just had the energy and patience to try on my own with Tommy and so far, Tommy is doing a marvelous job! 

We've had one g-tube feed in 48 hrs for water because his diapers said we needed to.  Lots of sippy cup progress (I took the valve out).  I watch how much volume of liquid is going in and I'm watching his wet diapers.

Please think good thoughts and pray for health and continued progress.

Wednesday, May 11

What works for us Wednesday - IEP's

This is from a Florida mom's perspective on IEP preparation.  I don't think I could have written a description much better than this. 

Our preschool team is wonderful and often bring more ideas and support to the table than we could ever.  They are trying out a weighted vest with Tommy to get his need for sensory input met which will allow his body to then focus more on an activity or circle time.  Side note, if you have ideas for chewies please let me know as he is loving surgical tubing.  The teacher in our preschool has been so supportive with daily communication and ideas and well... it's perfect.  Tommy has what I consider his aide, but I know the school isn't terming it that way.  And he has great nursing services within the school there too for g-tube and attendance illness trending and notification to us because he is immune deficient. 

Next week the preschool team, our local university and us are meeting to explore assited technology aides for Tommy because his progress on sign and pecs is a little slow.  We may even expolore an ipad for Tommy as a way to spark some interest thru games, self regulation, and sequencing applications to use sign language and pecs to communicate his needs and wants.  I was amazed when I saw the ipad that my friend Gretchen used with her boys, and then to see the twins use her ipad and be so 'sparked' into words and sign it blew me away. 

Tuesday, May 10

Using big girl words.

Tommy hasn't been feeling his normal self lately and all the green boogery eyes and nose was surely the cause.  So the dr appt at 8pm last night (I could only get after hours) determined he probably has a sinus infection and maybe an ear infection but Tommy wasn't cooperating on the ear issues so that is a guess.  The dr wasn't my favorite.  But.  I was able this time to use my 'big girl words' and communicate Tommy's needs.  Which in the past with this particular doctor I let my emotions get too, well, emotional and I lost track of words and complete sentences and went straight to tears.  So, this was much better for both Tommy and I. 

Before the appointment, I had gotten snacks for Liam's T-ball game and went to watch him and Colin in what turned out to be a *hilarious* game of 4 year olds playing T-ball.  Some were even fielding their own balls after hitting them. 

We had a quick dinner as a small family, Hannah was working and Nate was at dad's house.  Colin and I decided that maybe since Tommy was going to the doctor anyway, we would get the x-ray for
Atlantoaxial instability, which is a common orthopedic problem seen in people with Down syndrome (and have had the xray request from the dr for awhile).  And we decided, since the blood lab work was nearing it's 6 month shelf life on our bulletin board we should probably get that taken care of too (anemia, thyroid, etc).

So, I treated Tommy to Dairy Queen french fries, hoping that bribe would last mommy a few brownie points for the xray and blood work.  Plus, Hannah was working drive thru and after all the DQ is very close to our pediatric clinic, there were so many reasons to stop by.  Hannah wished Tommy well and we exchanged love u's and we were off on the adventure of medical procedures.

As soon as Tommy was within the pediatric clinics and not even down the hallway to the xray, he remembered how much he didn't like this place.  And he remembered, by flopping and laying down and not wanting to go any further.  If you have a flopper as a child you will quickly know just how heavy that lil sack of potatoes becomes. 

The xray tech showed me the box that Tommy should sit on "and look that way and have him hold his head really still between the glowing hash marks on the wall".  What?  He is four.  "Okay, I'll place this stuffed animal on this chair and he can look directly at the stuffed animal, and hold still".   So, I used my big girl words of "he is Tommy, non verbal, non cooperative in all things xray".  "Okay, I'll call some help".   So we modified the process by me wearing a lead vest, calling in more helpers and Tommy sitting on my lap and being restrained while other folks held his head still.  It worked.  It was quick for Tommy's sake.  But really important information will come from this test on wether he can continue to jump on the trampoline and ride a horse, etc.

Then we did the dr visit and left his office at 8:45pm.  Dropped the prescription off at the in-clinic pharmacy and asked how late the lab was open, which turned out to be 9pm.  I looked at Tommy who was smiling at me (probably because the pharmacy was near the parking lot door and he had hopes of leaving) which I interpreted as 'let's do this mom' and we were off to the lab downstairs.

The lab tech was probably in high school and the size of maybe half of me, so I knew with Tommy this was going to be hard.  She shared that she felt kids were hard to draw blood from, which I gave her tons of encouragement, said I would help her figure this out from Tommy's needs perspective, and oh by the way I need this to be done within 10 mins because I've got to return to the pharmacy for the antibiotic.  Shy grin.  That would help her work faster right?  ha ha.

What worked best about the blood draw is that the lab tech was good at communicating with "her big girl words" and I was good at communicating exactly what Tommy needed (door closed, don't pull out the gloves/turniquet until you absolutley have the vials etc ready because those are his hot buttons, and yes he wants a pillow under his elbow).  Took his shoes off and pinned his feet under my legs while he sat in my lap (his favorite place in the entire world) and took his left arm down to his side and she took his right arm with the beautiful vein in it (helps to know your child's best arm if they have lots of blood draws) and wal-lah!  One stick and barely five minutes total from door closing we were done and Tommy was giving her a high five.  Okay, I gave her a high five too.... and if I had cash on me, there was going to be a tip.  She grabbed my shoulder and said she learned alot from me in that short amount of time.  I reminded her that Tommy was actually the teacher, and even though non verbal, it was soooo important for her to understand how he needed things done.   I'm mearly his mom and that using our big girl words helps so much!

Tommy Adventures