Sunday, October 19, 2014


Yesterday the boys and I headed out to my mom and dads for a party.  Father Pat was visiting from Ireland so the entire Reardan church was invited to gather and visit.  While Father was in Reardan he became part of our extended family so it was fun to see him.

Riley loves a good party and he knows how to hold court.  He has met most of these people when he has sleep overs at Gramma and Grampa's and goes to church with them.  They have certainly heard plenty of Riley stories.  Gramma isn't shy to brag about all her grandchildren.  

At one point I walked out side where a large group has gathered and I hear Riley saying  "YOU KNEEL DOWN"  when I look over there is a man actually leaving his chair to kneel down and Looks to Riley for further direction.  Riley then says  "BAA LIKE A SHEEP"  And sure enough it starts to sound a like a farm with the animal noises.  He was bossing these grown men around and they listened.  Its insanity.

I've never seen adults do such insane things for a child before.  Riley has a strange ability to get people to do what he wants.  Such as the night he had Gramma and Grampa playing in an air band while we ate a Chinese restaurant.  Its the strangest thing I've ever seen and if you know my dad in real life you'd know just how insane it is to see him playing the air drums.

Saturday, October 18, 2014

Pudge and Biggs: What Fuels the Helicopter?

Tonight I was trying to gain some inspiration for my 31 for 21 post and stopped to read of a few of my favorites.  The mom that writes this blog below is hysterical and real.  Her life is chaotic and she paints the story beautifully.  This particular post really hit home with me.  I think its a great read for all my teacher friends.  Just a little something to file away as you deal with IEPs for kiddos in your classrooms.

Pudge and Biggs: What Fuels the Helicopter?: Recently, I've been fielding a few emails from parents who are faced with the task of writing their child's first IEP or working to ...

Tune in tomorrow.  I have some good Riley stories to share.

Friday, October 17, 2014

Love Songs

Riley sings to Maddy almost every morning during the car ride to school.  This is his current favorite.  He makes me smile!  The video isn't the greatest but its still pretty sweet.


Thursday, October 16, 2014

The Insanity in My Head

I'm not even really sure where to start with this question and really its a whole bundle of questions that doesn't get tied up with a nice bow.   You'll have to forgive me if I don't make much sense.  I've been thinking a lot lately about why I care so much about what type of classroom Riley is in at school.

We have pushed and pushed Riley from day one.  Seriously the hospital OT or PT saw him in the NICU.  Then we started at the Guilds School and then on to private OT, PT, Speech and tutors.  All for what?  Riley's happiness?  I'm not so sure he is happier than he would be if we hadn't done all of those things.  He's happiest when he is with his brother or his friends.  None of these activities have given him his hysterical sense of humor that we all love so much.

So are we pushing and pushing for us?  Am I the one that cares too much about what stinking room he is in and who he is allowed to be with in class?  If he gets moved to a different room that is more self contained is it really going to stunt his happiness and prevent him from making friends?  Could we just over compensate with extra curricular activities and make sure he stays social that way?

They often tell us he does so much better work in small groups and one on one situations.  I am sure most kids would.  Seriously isn't the entire issue with classroom size...the bigger the class the bigger the distractions. Are we slowing down his academic progress by insisting he spend a large chunk of his day in a general education classroom.

 Riley has trouble transitioning from one activity to another.  Sometimes he just needs more time.   Sometimes he is just a stinker.  He knows when it is time to line up from recess.  He knows what is expected of him and yet he chooses to keep doing the activity that makes him happy.  No matter what classroom he is in he'll need to learn to come in from recess.

Riley is just about to turn 8.  He doesn't have the ability to make choices that impact his future.  His hold world is about immediate happiness.  Listening to his teacher doesn't often bring him immediate happiness so often he doesn't choose to listen to her.  I know that while doing math today doesn't make him happy it will ensure that at some point in the future he is capable of managing a bank account and budget so he can live independently.  Is that more or less important that learning to act appropriately in a social situation, or learning to make friends with new classmates.

I'm tired of having to work so hard to convince people that my child is capable and worth the extra effort it takes for him to be part of the group.  That seems to really be the core of all of this...  he deserves to be treated like a kid with potential not a kid that needs to be kept separate from other kids.   Every child deserves that.  Every child deserves to know a kiddo like Riley that sees and navigates the world a bit differently.  I don't think that the message it sends to the kids left behind in that general education classroom is considered.  "Don't act different kids...they will send you away."  They also see how the adults interact with Riley when he is in class.  So many life lessons area taught to all the kids in such a subtle way.  They see when everyone is treated with respect and they also see when every one is not an integral  part of a classroom.

OK I'll stop talking these circles.  These are complicated issues and they confused me daily.  So if you have a crystal ball let me far to do you push and when do you just throw in the towel and take the easy road.

Wednesday, October 15, 2014

Bye Bye Hearing Aid...Hope To See You Again Soon

I don't know too many parents that would give their toddler or even their 7 year old and really not their 7 year old with Down syndrome a couple thousand dollars and send them to school.  I'm sure you are thinking I'm crazy with even bringing up the idea of it.  Those of us that have kiddos that wearing hearing aids have the joy of doing this every day.  Did your heart just fall through your stomach?

When I put Riley's hearing aids in each morning I'm doing the equivalent of saying "here Riley take two thousand dollars to school and be careful with it all day and make sure you bring it home with out any wrinkles."  Then he gets to school and they add an FM system to it and it brings the value up several hundred additional dollars.

My freak out level with this has gone down considerably over the years that Riley has worn hearing aids.  With each new incident or game of find the hearing aid I have learned to just let it go.  I can't possibly expect Riley to completely understand just how much value he totes around in his ears.  Over time we have worked through many issues and Riley has become much more responsible with his "ears".  He often will ask for a break when the sound is overwhelming.  He typically will give them to an adult or put them in his special cup.  He hasn't hid them under his bed or behind the books in ages.  We have survived preschool, kindergarten and first grade along with multiple babysitters, trips to Gramma's and just the over all craziness that comes with Riley.  We had a good long run of being able to find his hearing aids after a night spent on the playground, a random day in our drive way, hidden in classrooms, and goodness knows how many times we have turned our house upside down looking for them.  They have always turned up.  I have learned to stay calm....they always surface.

Well, last Thursday he didn't have them on when I picked him up from school which is not abnormal. They have been packing them up in his back pack so I didn't think about it and off to OT we headed.  Didn't cross my mind again until Justin found just one hearing aid on the couch Friday morning.  We can only assume that sometime during the school day on Thursday he took them out and stuffed them in his pocket.  He started doing this because his teacher doesn't stop him.  She seems to think this is an acceptable thing for thing for him to do so he continues to do it.  That hearing aid is somewhere between where he stuffed them in his pocket and here.  The possibilities are endless.  We don't know when during the day he took them off so they could be anywhere in the school or playground.  We do know they aren't in the van, the OT's office and likely aren't in the house.   There is a distinct possibility that Oakley chewed it up and is currently trying to digest it.  It is equally likely that she has already pooped it out somewhere in our yard.  Feel free to look...I'm not going to.

As  Rex says.....we had a good run.  It took him over three years but he finally managed to lose a hearing aid.

This afternoon we went to see our friend Nancy at Columbia Hearing and had molds taken for new aids.  We go back on Halloween to get all set up.  He is pretty relaxed at Nancy's office.  He just hops up in her chair and chats away while she squirts this silly putty like goo in his ear and then waits for it to harden so she can remove it.  It makes me a little twitchy just thinking about something squishy in my ear.

You'll have to tune in later to see what kind of sweet new hearing aids he picked.  Or try to get him to tell you about them.  I'm excited we get them on Halloween.  Its going to complete the costume.  He's pretty excited too...  I'm hoping that the excitement of it will help him want to wear them at school.

The really frustrating part of all of this is that he has more adult supervision this year than he ever has at school. Add that to the fact that any adult would watch a kid put a pair of hearing aids in their pockets and think it was ok is more than my current frustration level and lack of patience can handle.  I get to spend the next two weeks trying to get school on board with a better plan to ensure we don't have anymore lost hearing aids.  Why do I some how think this is going to be one more reason they try to take him out of a gen ed classroom.

Tuesday, October 14, 2014


Our minds are as different as our faces:  we are all traveling to one destination- happiness; but few are going by the same road.  ~Charles Caleb Colton~

Riley has a smile that lights up the world.  I love that he smiles with his entire body!!!

Monday, October 13, 2014

But he doesn't have an occupation...

 Riley has been working with an Occupational Therapist (OT) since he was about 1 year old.  I'm sure most of you have head us talk about Robin...  Robin is Riley's OT and our friend. When Riley started at the Guild school at 10 weeks he saw a speech therapist and a physical therapist.  At about one year old he added occupational therapist and a special education teacher.  Robin was assigned to be  Riley's OT and boy are they a match made in heaven.  Robin is able to keep up with him and challenge him while making him do a ton of work.  We were really lucky that Robin has a private practice as well as her time at the Guilds School.  At 3 years old when Riley graduated from the Guilds school he started seeing Robin privately.  When Riley was at All Saints she actually came to school weekly and worked with him there.  Since Riley is able to access OT support through the public school system she no longer comes to him at school but we go to her office for an hour every other Thursday after school.  She keeps the really hard stuff at her office.  This is a weird spandex swing that sucks you in and makes you work your entire body to keep your self straight and then drag your self around while you write or do puzzles.  

Occupational Therapy seems like a funny thing for a baby to go to.  Why would you do that....he doesn't have an occupation.  Well, really every child does.  Their occupation if you will is to play.  It is amazing how much learning really goes on while a child is playing.  We typically take it for granted but with Riley we have learned about all the itty gritty details of it.  
For those of you with inquiring minds I've taken some information off the National Down Syndrome Society website about Occupational Therapy and what it might look like for a child with Down syndrome.  

Occupational therapists who work with children have education and training in child development, neurology, medical conditions, psychosocial development, and therapeutic techniques. Occupational therapists focus on the child's ability to master skills for independence.
These can include:
  • Self care skills (feeding, dressing, grooming, etc.)
  • Fine and gross motor skills
  •  Skills related to school performance (eg: printing, cutting, etc.)
  • Play and leisure skills
When your child is an infant, your immediate concerns relate to his health and growth, development of the basic motor milestones, social interaction with you and others, interest in things going on around him, and early speech sounds and responses.
At this stage an OT may become involved to:
  • Assist with oral-motor feeding problems (this can also be addressed by Speech Pathologists). Due to hypotonia and weakness of the muscles of the cheeks, tongue and lips, feeding is difficult for some infants with Down syndrome. OTs suggest positioning and feeding techniques, and can be involved in doing feeding studies, if necessary.
  • Help facilitate motor milestones, particularly for fine motor skills. Occupational therapists and Physical therapists work closely together to help the young child develop gross motor milestones (eg: sitting, crawling, standing, walking).OTs work with the child at this stage to promote arm and hand movements that lay the foundation for later developing fine motor skills. The low muscle tone and loose ligaments at the joints associated with Down syndrome are real challenges to early motor development and occupational therapy can help your child meet those challenges.
When your child is a toddler and preschooler, she will likely have some independent mobility and will be busy exploring her environment. To assist her development you will want to provide her with many opportunities for learning, you will want to encourage the beginning steps in learning to feed and dress herself, you will want her to learn how to play appropriately with toys and interact with other children, you will be encouraging speech and language skills, and you will continue to provide opportunities for refinement of gross motor skills.  
At this stage an OT may become involved to:
    Facilitate the development of fine motor skills. This is an important stage in the development of fine motor skills for children with Down syndrome. Now they will be developing the movements in their hands that will allow them to do many things as they get older, but many children need some therapy input to ensure that these movements do develop. Children do this through play; they open and close things, pick up and release toys of varying sizes and shapes, stack and build, manipulate knobs and buttons, experiment with crayons etc. Your child may face more challenges learning fine motor skills because of low muscle tone, decreased strength and joint ligament laxity.
    Help you promote the beginning steps of self help skills. An OT can help parents break down the skills so expectations are appropriate, and can suggest positioning or adaptations that might help the child be more independent. For example, a child may have more success feeding herself with a particular type of spoon and dish.
Then your child enters the school system and the focus of your energies changes somewhat again! You help your child adjust to new routines, you attend school meetings to plan your child's educational program, you focus on speech and communication, you help your child practise fine motor skills for school (such as learning to print), you expect your child to develop more independence in self help activities, and you search out extracurricular activities that will expose your child to a variety of social, physical and learning experiences.
At this stage an OT may become involved to:
    Facilitate fine motor skill development in the classroom. Many OTs work in the school system and provide programs to help children with Down syndrome learn printing, handwriting, keyboarding, cutting etc. They will also look at physical positioning for optimal performance (eg: desk size etc.) and assist with program adaptations based on the child's physical abilities.
    Facilitate self help skills at home and at school. As with all children, our kids with Down syndrome vary in personality, temperament, and motivation to be independent. Some children with Down syndrome have a desire to do things themselves, such as dress and feed themselves. These children may learn these skills by watching others and participating from a young age. Other children may be happy to let others do things for them, and may resist attempts to help them learn these skills. In these cases an OT may be able to help a parent work out these challenges, while helping the child develop better motor skills to be successful in self help skills.
    Address any sensory needs your child may have. Sometimes a parent has a concern about things their child does that may relate to the child's sensory development. For example, a child may excessively put toys in her mouth, she may have poor awareness of her body in space, she may squeeze everything too hard or drop things a lot, or she may not tolerate very well some routines like washing and brushing hair. An OT can offer suggestions to help the child and parents deal with these issues.