Off Limits

Yesterday Luke was very fussy. Of course it was his own fault, he just had to wake up at 5:30am and have a party in his crib. He thumped, kicked, laughed, and played on and off until 8:30am...when I think he went back to sleep. At least he was quiet for at about 30 minutes. Then of course around 9am, he was up and partying again. So we got him up, and boy did that start a bad day. I’m sure I'm not the only one who has had to deal with a fussy kid.


During one of his “fussy” fits yesterday, I was doing dishes and all of a sudden the loud screaming went completely silent…never a good sign. I poked my head into the living room and what was Luke doing? Standing up, with one hand on our end table and one had on the recliner!! I stopped him just in time from throwing everything in reach on the floor, including books, a pacifier and nail clippers.

As much as I wanted to scold him, I had to be happy and excited instead. This is the second time in two days time that Luke has pulled himself to standing all on his own!! At 28 months old, and battling hypotonia (low muscle tone), this is quite a feat. Although since he seems to be finally figuring all this out, I may need to rethink the location of many things.

The cheering session

Anyone else with a special needs child will understand this. I find myself cheering when Luke does something other parents would get upset with their kids on or even be worried. The other day a friend went with us (Luke and my 4 month old daughter Faith) to Culver’s. When I put Luke in a highchair and told my friend I would be right back, I was going to order our food. She asked, “Will he crawl out?” She was worried he might try and that she needed to stay real close to him. It was then I realized how different life with a special needs child is. I told her “no, he can’t and if he did I would be so excited!” You see, where most parents would worry about the possible fall, I found myself wishing he would do it!


Sometimes I hear parents reprimand their child for doing something like running around a public place or climbing up on a stool or countertop, and I think “if only Luke would do something like that, I would be so happy.”

So I find myself looking for the little things, like the other day Luke pulled himself up all by himself, at the age of 27 months. Of course, he doesn’t perform on command so I have yet to see a repeat performance. But I am looking forward to him being able to reach all those “off limits” items on our end tables in the living room. Then I can join other moms who say “no, leave the remotes and mommy’s books alone”. Aaahhh….the dreams of a “special mom”.

Sense of Humor

Do you ever wonder what in the world could be going through your Childs’ head? I know I have had that thought millions of times over. Luke finds the strangest things so funny. If you want to get him to laugh, find a ball and bounce in on the floor. Yep, just bounce it. If you really want to make him laugh, find a soft ball and instead of bouncing it on the floor bounce it into Luke. He loves it!! I don’t get it. I pray he doesn’t grow up to be one of those kids that goes to kindergarten and at recess on the first day finds one of those kick-balls and decides to throw it at the teacher to watch it bounce, just because it is funny. Surely all boys love to do this and he’ll outgrow it, right?


Other times he decides to throw his Lego’s against the wall, and of course that is extremely funny. I try to show him that Lego’s are for BUILDING things….but no, they are for throwing of course…silly me. What was I thinking, of course you throw them!

The magic door

I think one day Luke will grow up to build or design doors. I’m sure people like that are out there. How else would we have those automated doors, right? No matter how small or large the door, Luke will stop in his tracks to watch a door. When we go to therapy in Peoria, IL they have automated doors. So once we step in the magic place they slide right open and Luke just stops and stares, like they might never close again or something. Of course they can’t close until we move, and he won’t move until they close. You can see my problem. It is a never ending cycle. Of course, where we go has to have two sets of sliding doors in a row. So once we get through the first set, we aren’t done yet. So on those days you can see me putting pressure on his back saying “Come on, let’s go. We have to go inside in order to see them close.” While doing this I am usually juggling at least one diaper bag, if not two diaper bags and our 5 month old daughter in her infant seat. I tell you, after a while she gets so heavy I don’t have a lot of patience for those doors.


That is one of the worst cases we deal with. But the doors don’t need to be automated to get his attention. Whether it is church, Culver’s, our the other therapy place we go in Bloomington, IL or even at home; doors are the highlight of Luke’s life. Sad, but true.

On a nice day I open the main doors (leaving only the screened storm doors) in the front and the back of the house. It will occupy him for hours crawling from one door to the other. First, he’ll play with the front door until he accidently shuts it and can’t get it open anymore. Then, he’ll crawl to the back door and do the same thing there. I have learned that if I don’t want to keep opening the door for him, I put one of those small 8” diameter plastic balls in-between the main door and the storm door. That way when Luke tries to shut the door it just bounces back at him. And, of course his reaction is to laugh. And I mean laugh each time the door bounces back, it never ceases to be funny. Aahh…the simple things in life.

The Simple things

Today our PT focused on Luke’s ability to bend the knee. You would think that would be rather simple. But for Luke it is a great challenge. He must learn to not overcompensate for his weak muscles. It is much easier to lock out his knee than to bend them. Now that he is doing well walking with a walker, we are going to the next step, being able to bend and the knees and pick something up off of the floor. Luke is also smarter than most take him for, he knows someone has a hold of his hips, so what does he do? He fakes you out, just when you think he is bending just like you want and he will pick an object up he lifts both legs in the air expecting someone to catch him. Sometimes this is accompanied by tears of frustration, and other times he laughs and laughs…because of course it is the funniest thing ever!


Then we tried to walk down stairs. Once again something that seems so simple. But you should try it when locking out your knees…not so easy. For some reason he kept bending one knee and almost kicking it, but would lock out the other. It was like he was saying “no way man, I’m not doing that!! Are you crazy?” So the whole experience was more like he did a scoot-hop combo (while crying of course) and would eventually wind up on the step below him, landing with a THRUMP!! Then he would cry some more.

Can you guess what our new homework is for this week? Yep….stairs. Oh Joy!!!

Mystery solved!!

Now I would love to take credit for finding the famous Sippy Cup, but as I said before I was out-smarted. So, of course my husband found it!! What isn’t fair is that he wasn’t even trying! He was simply bending over to get something off the floor to throw it away and WALLA!!!!! Sippy cup found!!! It was half under the back of the couch (which is up against the wall). In my defense it was in a location hard to see and where we also keep two safety gates so we can go on “baby lockdown” when trying to control traffic of our munchkins. If nothing else, my husband is a great finder of the unfindable (my new word), kind of like a dog with a bone….just won’t give up. Men, what would we do without them?

Kiddy Songs

Now most moms spend their time with their babies and toddlers singing “Itsy Bitsy Spider” or “The Ants go marching”, for fun. But as a special mom, I have a special use for these songs.


Ever since Luke was born he loved to hear me sing. We learned early on to play the radio to help him sleep, after all my voice could only hum so many songs. It got to where I would make up my own words to “rock-a-by-baby”, and I could only come up with so many words.

Now instead of trying to keep him asleep, I try to keep him happy. So when we go to draw blood at the hospital, what do we do? Sing “Itsy Bitsy Spider”, of course! When he throws a tantrum, what do I do? I would sing, but he can’t hear me over his screams…so I make lots of noise like bouncing the big exercise ball on the floor (which vibrates the whole house). What does Luke do? He laughs…of course…until I stop…then he cries.

And, when we work on walking and Luke gets tired and upset? We sing!! Of course!! And not the traditional beats, but to the beat of however fast Luke is walking….so sometimes “Itsy Bitsy Spider” sounds more like “IIIIttttsssyyyy….Bbbbiiitttsssyyy…..SSSSSppppiiiidddeeeerr…cclliimmmbbbeeedd….” You get the idea. Personally I like “The Ants go Marching” best when working on our walking….although I usually make up a lot of verses with silly things because I don’t know all the words. But the beat is perfect…sometime we take it slower….but it works!! That is all that matters.

The best toy

I am so grateful for all the therapy Luke gets, but my weakness comes when I see the toys they use with him. I go to the store for groceries and what do I do? I have to check out the toy section to see if they have a particular toy. "It will help his OT", I tell myself. So now our living room (which is small anyway) looks like an overcrowded toy store. But, last Saturday was my weakest point....garage sale!! Not just any garage sale, but the BIG spring garage sale in my neighborhood. Not just a couple sales, no they go all out. About 40 sales were listed on the community map, but there were at least a dozen more that weren't listed where people took advantage of the crowds of people looking for good deals.

In the midst of it all I did find some great deals, and got some more toys for the living room...only they were BIG toys. For example a Little Tykes kitchen...which is now Luke's favorite toy. Not because of the awesome shelf space or the cool knobs for the grill and stove top....no it is the two doors that hold his interest!! The stove door was pulled open and pushed shut at least 100 times Saturday night. I didn't realize it at the time, but I think it was the best toy I have ever gotten for him. It has a door on the microwave, which is so high he has to stand!! So I help him stand and he will stay there and play with that door over and over at least 10 minutes straight!! Which is so great, you see I could never leave him holding on to the couch to play or anything, because he would scream and scream. But the door has a magic power over him, and he doesn't notice when I back away. So great!! Aahh...the simple things!! It may be big, but it was definitely worth it!!

5000 times...really?

The other day Luke’s PT mentioned that it takes 5000 repetitions for kids/people to get something. I believe the PT was referring to physical activities, like the yoga poses . But I got to thinking (which I have been told can be dangerous). Could this be related to other parts of learning with kids? Is that why saying “no” once is never good enough? I have to say it 5000 times? And not just “no”, but the “no” in reference to each thing done wrong. Like I have to say “no” in reference to throwing the juice cup at sister’s face, 5000 times. Then I have to say “no” in reference to throwing the juice cup at mommy’s face, 5000 times. No wonder I feel like I repeat myself!! Then, is that for all people? Is that why asking my husband to take something downstairs doesn’t work the first time? Must I ask 5000 times?


Maybe this 5000 times thing is why I have such a hard time trying the yoga poses on my wii fit. I think I will make a goal of trying them 5000 times before giving up. Wow, 5000 times I wonder how many days that will take?? 365 days in a year….maybe if I could do it 2 times a day….or maybe 3…? Wow!! I don’t know if I can find time for all that!! No wonder it is so easy to give up on those physical exercises.

The mystery of the Sippy cup

Who said being a mother is boring? After all I spend at least an hour a day playing detective. Where did the remote go? Oh, in the towel drawer…of course! Where is mommy’s shoe? In the laundry basket…duh!! Now I have met my match, I have spent untold time in the last 5 days searching for the missing Sippy cup. It is the mystery of the century. I’ve looked all the usual places, the towel drawer in the kitchen, the stove drawer, the toy basket, the laundry basket (in all rooms), under mommy’s bed (which I did find three plastic food items that had been missing from the grocery cart), behind the couch, under the couch, by the DVD player, behind the DVD player, and many other places. Now I find that I am questioning myself, did we really have 6 cups? Maybe it was only 5? What color is the missing cup? I was sure we only had two green, but maybe it was 3? I feel like I am losing my mind. So the Sippy cup mystery continues, I just pray it didn’t have milk in it. I think it was only juice, I hope it was only juice. Only time will tell, but this is the longest time the Sippy cup mystery had eluded me. You would think a 2 year old confined to crawling would have limited options to hide things, but obviously I have underestimated Luke’s ability to out-think his momma.

Little Tykes Yoga?

Now Luke goes to Physical Therapy once a week, he also has OT and Speech as well as DT twice a month. His PT therapist tries to stretch his limits and try new things, which is great. Today we went to a "new" level. We tried yoga!! Yes...I said yoga. I never dreamed Luke could do something like that. It was pretty funny to watch, a 2-year old who barely understands what you are saying and whose communication with others is "aaahhh" or "aahh dah"...every now and then we get a "dough" for door. Anyway, I digress. Here was my 2 year old son who has low muscle tone (hypotonia) going from a "running" position to a "warrior 1" followed by "warrior 2" and finally ending in a "tree". Of course after we did it one direction we had to equal things out and do it all again...this time with the other side. So we started by keeping our weight on the left foot and then tried it all again putting all our weight on the right foot.




Surprisingly Luke was very tolerant. I know I struggle with those positions on my wii fit and I can only do it so long without falling over. I guess this is definitely a time to thank the Lord that he is so flexible!! Look out Yoga...Luke is coming!!

The Ball

I never realized how useful a simple exercise ball could be. When we went to our birthing class before Luke, we were told it was called a "birthing ball". You probably don't want to know all the ways it can be used, but I found that I really wanted one so that I could use it to massage my back. It felt great. Then after Luke came, I was ready to put it away...but my sister gave me an exercising video to use with the ball...so I tried that out. It actually worked well.

Then came all the crying from Luke, well I had heard somewhere that colicky babies like to bounce. So what did I do? I tried it, and I bounced and bounced and bounced...you get the picture. We low and behold, it worked!! Sometimes we bounced so well I thought I might hit the ceiling. I was worried I might give him that shaken baby syndrome, so I always held on tight. But when he really let loose, we bounced hard...then when he would settle down we would bounce soft....then he would let loose again...and off we would go!! Boy, did it work well!!

Then our second child came, she wasn't as colicky as Luke...but we still used the ball!! With her it helped to put her to sleep...especially during the night when I knew she wasn't hungry...just having a hard time sleeping.

Now I use the ball and a chair with I play with Luke at his Toddler table. Luke also uses it as a giant toy. So now its best function is to get hit around the house. Luke bats at it, and it rolls in the other room. What does Luke do? Of course he crawls after it laughing. Then, hits it again and it comes back or goes down the hall...all the while a little boys is laughing and chasing after it!!

That ball is one of the best gifts anyone ever gave me, right up there with other things that we use all the time and not always for their designed purposes...like dishes, books or even shoes. Look at shoes, designed for wearing on our feet....but many times we use them as fly swatters, building blocks, chew toys (for pets) or any other toy to hide for our children.

Carrying toys?

Despite Luke's inability to walk, if he wants to move something to another room nothing will stop him.  Now that he has crawling down well, at 28 months, he just uses his teeth to carry his monkey (Curious George) from room to room.  And, lets not stop there...why not take anything?!  Like our juice cup, yes the juice sippy cup.  It has handles and he could probably crawl and still hold onto it, but no he would rather use his teeth! 

Even though one doctor said he will be considered "metally retarded", he continues to suprise me with what he understands and does.  (I truely believe that doctor is wrong by the way).  Just the other day I was running water int he tub for his nightly bath, and what does he do?  He crawls to his room and returns to the bathroom with a washcloth in his mouth.  He knows!! 

I love that he understands those things, although sometimes I can't help but compare him to a puppy!  (Only in that he is carrying everything around in his mouth...you would never put a diaper on a puppy!) 

I've got to love him!  :)

Special Needs?

What makes a kid special needs?  And who is special?  The kid or the parents?  My son, Luke seemed completely perfect when he was born.  It wasn't until he was a year old and we saw how far behind he was becoming.  He wasn't crawling or saying "da da" or using his fingers to go after a cherrio. Despite his slow development he seems so "normal" sometimes.  I can't help laugh at all he does.  One thing I love is his smile and sunny personality.  That is my definate bright spot. 

So often we look at the negative with Special Kids and that is why I am starting this blog.  No one may ever read it, but if I can help one parent with a special kid smile...then it was worth typing my thoughts out into space.