Don't worry mommy ...

The three most dreaded words a child can utter.  "Don't worry mommy....".  For Espen those words can only mean I better watch out!  "I didn't eat it", "I didn't poop on the floor," "I won't fall to far from the deck".  He is a clever and creative little boy.  But also mindless of the danger he may be facing by doing the stunts he imagines are going to be tons of fun! 

Most lately, he has been saying "Don't worry mommy, I have SPD".  And if you ask him what that means he can tell you Sensory Processing Disorder.  We have all the children's books about it and he loves to read about kids like him.  Kids who like to crash into things or fear loud sounds or are bothered by clothing.  He can tell you that SPD makes him feel normally crazy!

My son knows he is gifted in many ways.  Yet he can't comfortably look me in the eye.  That is sensory overload for him.  He can't use a fork for dinner.  It is just hard and his frustration goes through the roof so we make adjustments.  He can't stop screaming at the grocery store or in the car about the sounds and the lights.  He can't write his name or draw me a picture.  Holding the crayon is a frustrating challenge.  He can't wear pants with buttons or zippers.  He lacks the dexterity to fasten them back up and independence is a huge issue in our house.  He doesn't get the opportunity to play much with other children because parents are concerned with his strength and crashing into them. 


All of these things the occupational therapists help with.  And it gets better some days and worse some.  We just keep going.  And we are thankful for his giant vocabulary!  So that he can learn to tell us the SPD things! 

Normal things in our house are not normal in yours!  It is normal for us to be outside no matter the weather.  It is normal to have few distractions or noises in our house.  It is normal to wear 4 or 5 or 6 changes of clothes every day!  It is normal to make giant messes with flour, water, paint, goop, chalk.  It is normal to have a sensory swing in the dining room and a scooter board in the hallway and a mini trampoline in the living room.  It is normal to hang from the pull-up bar and eat while standing.  It is normal to take baths 2 or 3 times a day and to still use a binky.  It is normal to have no shirt or socks on even on the coldest days.  And fast... we are sorry if you can't keep up with us.... we move very quickly and that is normal. Don't worry, Espen has SPD and it is normal and fantastic and aggravating and confusing all at the same time.  Even for him!  But he knows it is how he is.  It is his normal. 


Sometimes people don't understand or they get scared or concerned.  That is ok.  Sometimes kids won't play because he is to rough.  And that is ok.  "Don't worry mommy, I have SPD, but I gotta try, gotta try."  My child is amazing.  Just get to know him! 

This is our normal...  nothing we do is weird or remarkable.  But consider if your words or remarks are hurtful to one small little boy who wants to try.... Consider if your children call him weird or stupid how that feels....

Don't worry Espen.... mommy believes your normal and just as you are meant to be....

Summer Activities

The summer, although the weather is not demonstrating it, is nearly here!  End of school is clearly in sight.  In Nebraska parents are already planning the summer activities for their children.  So I jumped on that band wagon and started to think about what we would do for the summer.  We are on a tight budget and can't afford to go to every activity but the importance of participation in summer fun does not go un noticed! 

I can't speak of every community but if you are looking for great things to do with your child or children this summer here are some places to start...

• The library ~ reading groups and programs, check out books on themes or topics for home activities.  Most typically these are free! 
• Whole Foods ~ cooking classes for all ages, but especially great ones for half pints!  Great way to get your child to eat different foods or try new stuff!  In our area it is $8 per child per class. 
• Forest preserve ~ outdoor day camps, explore and see different natural habitats
• Sport camps ~ I found a gymnastics studio, the ymca, a dance studio, a martial arts studio and athletic centers all have sport/athletic things for children
• swimming pool ~ swim lessons are so important for kids!  Last year I paid so much for pool visits and for the pool in our back yard that this year I joined a country club social membership for the summer.  It is CLOSE and we can use the pool anytime! 
• ice skating ~ ESPECIALLY when it is really hot!  It makes for a great place to COOL off!
• roller skating~ our local rink has classes & programs all summer long
• zoo & museums ~ both near us have summer programs.  We tried the zoo camps last year and did not like them.  Ask some questions before paying for it!  Memberships help off set multiple trips to these locations! 
• art centers ~ look for community art facilities.  There is typically someone teaching a mixed media type class!
• splash pads or your garden hose!  Great way to cool off for free! 
• garden centers ~ a clever and fun way to be around plants.  Frequently they have some basic classes or demonstrations and children are super interested in what grows.
• project swap ~ trade afternoons with a mom friend and entertain all the children for a couple hours in some project or activity.  Maybe a giant finger paint party, pedicure party, bake up something fun, take a nature walk and find things

Hopefully our summer is equal parts sitting by the pool and swimming in the pool but we may need some other activities so we will see where our desires lie!!  I'd love to hear your ideas for summer fun!! 

Obsessive Compulsive

My son will be 4 soon (hard to imagine).  We have had some very rough days where I was just WORN down.  Our issues lately are getting better to understand.  My patience is on extended service.  Except the obsessive compulsive behaviors. 

Obsessive-compulsive disorder is an anxiety disorder in which people have unwanted and repeated thoughts, feelings, ideas, sensations (obsessions), or behaviors that make them feel driven to do something (compulsions).A.D.A.M.

Often the person carries out the behaviors to get rid of the obsessive thoughts, but this only provides temporary relief. Not performing the obsessive rituals can cause great anxiety.

We are no where near an OCD diagnosis but he has tendencies that mock the erratic behaviors. The repeated thoughts and ideas that drive him to action and fits of uncontrolled worry!  It is hard to reason with him, persuading him to something else is nearly impossible and forget about changing his mind!  The last 3 days he has been OBSESSED with his whistle.  He is driving me insane! 

He asks, searches, talks about, begs me to find, helps me search and strongly demands the whistle.  It is nothing more than an inexpensive whistle Hannah got him on one of their excursions to Target.  But the last few days he has worried, cried, cajoled and harassed me about the whistle. I can not find it.  No where.  On and off now for 3 days I have had to calm him about a whistle and I am 100% certain that until we find the whistle, he will question me and we will look for this whistle. 

He remembers and recalls things and he worries, stresses and has anxiety when we can't find it or satisfy his obsession.  Thankfully it is most always only one issue at a time.  I have been dealing with this quirky behavior since he was able to talk!  Unfortunately, it seems to get weirder as he gets older.  I find the best way to manage him when he is obsessed and compulsively doing something is to be calm.  I always assist in the search if there is one.  I try to keep his anxiety at a minimum and focused on just the one thing so that he doesn't stress and worry about unnecessary things.  I try to get us to a safe and quiet place.  We keep things in a fairly organized manner so that things don't get lost.  Because he is not just obsessed with things but activities and people we have a schedule so there is little surprise in his routine.  If I tell him we will do something in a particular order, we do it.  We don't give him much "warning" about holidays or birthdays because he will worry, stress and have fits about what will happen.  The word SURPRISE is not a good word at our house. 

My son... almost 4.... and the fun never stops!! Now excuse me... I have to go look for a whistle!! 

Giving up or changing the dream after SPD...

We met Sensory Processing Disorder like a tin roof meets a rain storm... crashing and pinging uncontrollably!  We didn't know it was coming.  We couldn't prepare.  We were quietly getting along and then BLAM... the storm rages.  Sometimes it is quieter except for a soft tinkling then the boom of thunder tears up the silence and we are back to the crashing!  After 3 years, we know how to roll with it! 

I tell Espen our lives are like the ocean.  Sometimes a storm comes and we smash to the ground, wildly and without ability to stop.  Other times we are so still and calm that there are no waves at all.  Most of the time however we are just a wave rolling along consistently meeting the sand and pulling back.  He can understand and visualize the ocean.  He has seen the waves and knows what it feels like, sounds like, smells like, tastes like.  He remembers that if you are in the way a wave knocks you down and fills you will salty spray.  Sensory Processing is the ocean for our family!  Just like the ocean, we have our high tides and our low and we sometimes crash about wildly!  Occasionally someone gets hurt but we get right back up and keep going. 

I never dreamed my child would have this disorder.  Frankly when I was searching for help, I never thought I'd find any and that I'd just struggle with helping my child assimilate to societal norms on my own.  I spend a major part of my time reading and getting information, asking professionals and learning to help and understand my son.  I learn every day.  As does Espen. 

Part of understanding my son, the disorder and how it works in our lives is letting go of some of my "dreams" for him.  Just like every parent, I want him to participate in school and sports and activities.  I long for him to bring home an art project or a card or picture he made for mommy.  I hope for a hug given on his own.  I want him to have friends his age to play with, pals he can share secrets with.  Successful in school and eventually work, I want him to travel the world, meeting fascinating people and seeing amazing sights. 

Perhaps my dreams for him are grandiose. 

Yet Espen does participate in school... and twice a week we both have so much anxiety about it.  He can't sit and focus because there are so many other things happening inside and around him.  And I have heard nothing after 8 months other than how bad my child is.  We have only 10 more days and then summer to recoup and see what happens in the fall.  He is not bad.  I have not one time this year had a single project get sent home.  I can count on one hand the times he got a "good day" report.  I have heard that he "can't do" what everyone else can.  Yet he can write and recognize an E for Espen.  He can cut and draw shapes.  He can sing silly songs.  He has a sense of humor like a comedian!  He uses the bathroom alone.  He is learning things and I am proud of what he is doing!  Especially since I know his fine motor skills are delayed and that it takes huge effort to focus on a simple task.  He is excited to see me when he is done but never tells me one single thing that he did in the 3 hours he was at school. 

He participates in sports... he can ice skate and swim.  The things he is unafraid of trying scare me.  Yet he does them without hesitation.  It is amazing to watch him try to figure out how to cross one skate over another.  Or swim and do side breaths.  He can and does those things.  Because he doesn't have the pain to know falling hurts.  Because crashing is fun. Because being under water for long stretches at a time make him feel great and it is quiet underwater.  Because fear is not understood.  I can see growth in my son.  I encourage and afford skating and swimming because it is good for his body and mind.  But I wanted more....

After much discussion, this summer we opted out of organized sport participation.  He is not a candidate for soccer or t-ball or football.  Whistles drive him nuts, large crowds freak him out... these sports are not for him.  As much as we want to go see our son play ball we understand that those things right now will set him up for a failure.  So we stick to summer activities we know we will succeed at.  We will swim.  We will skate.  We will see about gymnastics especially jumping!  He is running and wants to run a race with mommy.  All of these he will feel successful at and we can enjoy watching. 

I do art projects with my son.  Or more aptly, I TRY art with my son.  He feels good when he can FEEL it, smell it, taste it.  Our art turns messy fast.  From the time he was tiny I allowed him to just be dirty.  So if I get out finger paint I had better be prepared for a naked child who is rolling in paint.  It is a rare day to sit and color quietly or paint a picture for mommy (like it NEVER happens).  And yet I encourage large messy things.  I let him paint the driveway or garage floor.  We put a chalk board wall in his room and my studio.  We have window markers.  We have face and body paint. We use permanent marker to make tattoos.  I can't save any of those for my wall but I can get some great pictures of my child having a fantastic time and I can put those on the wall!  But understand my frustration in just wanting once in a great while to have something cute and great to hang on my fridge or wall that my son made! 

I don't get a lot of hugs or snuggle time with my child.  Hugging is not something that feels great for him.   I get crashed into.  I get tugged on.  I am the monkey bars.  I understand my son.  These are the ways he loves me.  I make him safe so I am the one he crashes into. 

Even with some social anxiety I encourage Espen to meet people.  To chat aimlessly with strangers is not uncommon.  He invites random folks to our house.  But I listen.  If someone smells bad or gets to close I know I will need to remove or intervene quickly. His curiosity will lead him on new adventures... of that I am sure. 

This child is my gift.  He is my joy.  I will not give up my dreams for my son.  But I will make adjustments to what is most important to ME and learn what is best for HIM and encourage, afford, support him in that!  My child is one gifted little boy.  He may not fit into my ideal dream but he fits into my real life!  He may not fit into societal norms .... so I don't make him.  I explore every opportunity and create a path all his own. 

This crashing ocean is not what I hoped for in a family but it is the one I've got.  I can jump the waves holding his hand or I can be swept under... I choose to hold on and keep jumping. 

Sensory Travelers

It is spring break!  Soon it will be summer break!  Families all over are preparing to travel.  With any child, it doesn't matter if you travel 30 minutes or 8 hours, you have to prepare! 

Espen has always been an easy passenger.  He sits and talks.  He never sleeps.  And by never
I mean we can travel 8 hours in the car and he will be awake.  When he was smaller, he may doze for 15  minutes but otherwise I had better prepare for an awake, alert little boy.  What do we do with him? 

Even before we had a name for Espen's "issue", we were sensory travelers!  Now we know he has sensory processing disorder and we plan our upcoming travel more accordingly.  There is still LOTS of fun.... but we have some allowance for him!

1.  I pack healthy snacks.  Not a lot of sugar.  Carrots, celery, apples, chips, pretzels and crackers all make fun crunchy snacks!  While fruit snacks & fruit leather are good options for chewy ones!  We also have some organic suckers and gum!  When we stop for a rest I will let him get a milk shake or some pudding that he can suck through a straw or a cup of ice!  The oral motor stimulation involved in eating crunchy foods, chewy foods and foods that require a child to suck can satisfy each of these sensory needs.  (read more)
2. We stop often.  I plan on stopping myself to stretch every 2 hours.  I hate riding in the car so if I can get out every couple hours, get air and move.... then I can go another 2!  And the same is true for little ones.  So every couple hours we stop.  We get out.  We run and play.  We go to the bathroom.  We get a drink of water.  Visit with strangers at the rest place.  We get cold drinks with ice.  We walk.  If we can find a play ground we hang from the bars, go down slides, swing.  A lot of rest areas have play areas but if not, a tree works just as great for climbing and a hill for rolling! 
3. igadgets!  We have them.  And I am not afraid to use them.  Espen has an ipod that has games and videos on it.  He can listen to his music either through his headphones or I'll plug it into the car and he can control what we all listen to.  He can use my ipad and watch Netflix.  But just because we are traveling doesn't mean the time limit is lost... he still has a limited number of minutes to watch Netflix and if it is all used in the first part of the trip... that is a real bummer...  But there is no shortage of music and videos and games both educational and nonsense!  Great toddler apps include MONKEY PRESCHOOL LUNCH BOX, and all the TOCA BOCA games but his favorite is JETPACK! 
4. Pack a bag of fun toys and books that he has not seen for a while!  We have tons of cars and toys that he forgets he has!  And several books we rarely read.  I put them in a bag and he can play with some, none or all!  I put window crayons and paper in the bag.  He can draw on the paper or the window or himself.  It makes no matter to me.  He may not color on my car or eat the crayons.  Two simple rules!  Etch a sketch is a new favorite!  We have different hand fidgets.  They help just keeping his hands busy.  A hand fidget can be calming and relieve some of the fidgets!
5. I rarely forget the lovey, fuzzy bear or his weighted blanket or lap pad.  All of these help provide some sense of calm.  And he smells them which also provides him a sensation and a familiar scent!  An added benefit when we arrive at our destination is that he can still smell a familiar scent and the lovey helps him stay calm and in control in new surroundings. 
6. When we arrive we RUN.  We play.  We swim.  We get moving.  Our trip is to short to sit so we hike, explore, walk.  We don't force him to sit for a meal.  We don't force an early bed time.  We shake off the travel by moving our muscles.  Climbing, rolling, spinning, running all help the body get back to a "normal" state.  So we will spend a long day in the car and then we will EXERCISE! 
7. We rest!  We eat a balanced meal and have milk.  We get him a warm bath and let him soak as long as necessary.  We snuggle into a bed with our pj's and the lovey and we rest.  I try to find a place that is as clutter free as possible. We talk about our travel day and we talk about our plans for the next day.  To know what is happening and when is really important.  It helps with transition!  And we wake up to a new day... ready to go!

Enjoy your travels... I will keep you updated on ours!  And please feel free to share your helpful hints for long car rides... never know when I will need a new idea! 

Sensory Easter Ideas

Once again, everyone has been asking me what to put into an Easter basket for my Sensory Kid.  So I put together seventeen ideas for any kid instead of a bucket full of colorful candy!   

#1....  books ~ Espen loves books.  Books are a great gift for anytime of the year!  Every child loves books, to have and hold! 

#2.... grass seed and dirt ~ my son is interested in a garden and things that grow.  Grass grows fairly fast.  And what better place to grow it then in a decorated egg! Add some small shovels, seeds or garden gloves and he is perfectly content. 

#3.... tiny toys ~ my son loves tiny little toys or shapes or animals.  They are perfect to stick into a pocket of a purse for a fun surprise when you need a couple minutes!  They are fantastic in an egg!  He loves the little cars, animals, balls. 

#4.... fresh fruit/healthy bites ~ Espen loves blueberries, blackberries, raspberries as well as apples with cinnamon and orange slices.  As odd as it sounds, my child loves fruit!

#5.... temporary tattoos ~ he loves decorating himself with temporary tattoos!  We never have enough! 

#6.... sidewalk chalk or finger paint ~ who doesn't love sidewalk chalk!  We always need chalk or paint.  We use it on the trampoline, the sidewalk, the playground, the driveway.  He colors his arms and legs.  It is a mess that easily washes off and leaves no harmful side effects!   

#7.... pool toys ~ Espen is a swimmer!  He will be in the pool all summer.  Sinker toys, goggles, , squirt guns or swim trunks.  These make great Easter basket ideas!

#8.... MONEY! ~  Espen likes to buy his own things.  He is learning to manage his money and save for the things he really wants.  But the ability to purchase things with is own money is great!

#9.... Frisbee, kite ~ we like to be outside!  These also help with eye hand coordination!

#10.... crazy socks ~ he likes to wear socks that don't match or mix them up.   Often he refuses to wear shoes but I can get socks on him! 

#11.... CANDY ~ I'm not a total mean mom!  Of course I think we should all have some candy.  We would of course prefer the kind that is free of artificial junk or colors! 

#12.... bubbles ~ we never run out of bubbles!  He likes to do it himself, so the wands are always needed as well!   Blowing bubbles calms and orients kids!  So after all that candy, they may need calming! 

#13.... scented soap or shaving cream ~ my son loves to smell everything!  Small scented soaps work great!  He enjoys baths and can use them himself!  Please consider natural ones!  Shaving cream is just fun to play in and we play in it often!


#14...glow sticks ~ because the day light will end and everyone will be hoped up on sugar.  The glow sticks are fun to play with but also broken apart and put into eggs they make the eggs glow... so you can hunt the eggs into the dark! 
 
#15....balloons ~ water balloons, long ones, fat ones.  Fun for the whole family in the blowing up and playing with!  If it is a warm day water is always a hit!

#16.... games ~   Games that are "smart"... that help with shapes, counting or some fine motor task are just as great as games that are fun.

#17.... Most importantly put a note in the basket.  A simply written note will encourage him to identify letters and words while also let him know you are thinking about him. 

Compulsive little boy

Compulsive - (adj) driven to do something: driven by an irresistible inner force to do something

My little boy is compulsive.  He thinks and thinks about things until he gets satisfaction.  Sometimes it is quick and other times it takes a long while to figure out how to soothe or calm his thoughts.  This weekend we re-modeled his closet into a "fort".  It is nearly finished... needs some paint.  He LOVES it.  Friday night while I was at work they cut a hole into a wall.  He was so excited to show me that even when he slept, his mind held onto the need to tell me.  At 3:30am he woke me told me he had a surprise for me (and we know the last time he did this it was not a good surprise).  So I went nervously into his room and he turned on the lights to show me the hole and the progress.  He then turned on his heel and went back to my bed leaving me standing in his room with the light on.  He settled his mind as soon as he shared his room with me.

On Saturday he was curious about seaweed.  We happened to be going to HIRO 88, one of my favorite Asian fusion places in town.  I told him we would bring him a sushi piece with seaweed.  We did and put it in the fridge.  Late in the evening he woke.  I was asleep but Doug was watching TV.  Espen went in and asked if we brought him a seaweed.  Doug showed him the box and confirmed that we had.  Espen went back to bed.  He ate it when he woke up and did not like it.  Smelled funny! 

His compulsion goes as deep as the need to "tell" people what to say when we are playing to having a fit leaving the driveway without B or fuzzy bear.  He will make the trip a nightmare!  His mind will not rest.  I try and try to hang things in his room... He hates it and consistently removes things.  He likes blank walls.  You can not change the subject to help him forget.  He doesn't.  The force to do something is strong.  Once he has satisfied that drive... he quietly and quickly moves on.  Until the compulsion comes up again. 

Whether it is part of his sensory processing disorder or a separate issue.  It is learning how to manage his compulsive behaviors and understanding when it shall happen.  Nothing is so frightening as a mom as having a child with odd compulsions who likes to bang into you!!