Mom of a son with Developmental Delays............... takes worship to a whole new level!

For the most part, I have very seldom seen a person with developmental delays at church whether young or old. I rarely see them in a restaurant, store, or anywhere else in public other than an event specifically for them. I know they exist. Most caregivers and parents understandably find the idea of taking their loved one out in public both horrifying and embarasssing. Many behaviors and sounds are difficult to manage at best. No one wants to have a conflict with others about their child's right to participate in activities people with no cognitive disabilities can. In some cases, it may even be dangerous. No one wants to distract or disturb others especially in a place of worship. My church has done a wonderful job of including my son in the various Children's ministries at church by providing one to one assistance for everything from Sunday School to AWANA Club and special events. Every church is set up differently with their Children's ministry. Mine is set up so at age 6, children are expected to spend one hour in the service with their family and one hour in Sunday School. Realizing that my son is now 6 years old, I decided to follow the plan that works for most families in my church. I brought my son to the overflow room where people go when there is not enough room in the large sanctuary. I thought there would be a little freedom to stand up and get close to the screen or dance up front, sing and clap to the music. I was completely oblivious to the fact that this behavior was disturbing to others. Afterall, I spend all day with my son everyday, none of this phases me. I quite enjoy his antics. Now, I love my church and the people in it. They told me that this was disturbing to some people and that he is expected to sit still as possible in a chair and only stand when everyone else stands. He of course isn't allowed to start in with the sounds of frustration. I later found out that several people considered his attendance to be inspiring to their worship and so I felt better but I learned an important lesson. Just because my son has his challenges doesn't mean he can do whatever he wants during a church service either! Now everyone was very gracious with me. I returned on Easter determined to help my son participate in a way that would not cause challenges for anyone and when I arrived they had saved a place for our whole family. Instead of letting him run up front. I picked him up so he could see the choir and the screen over the heads in front of him. He clapped and  tried to sing and I knew I was doing something that pleased God. I was literally bringing my burdens to the Lord in a very tangible way. In my worship and singing I experienced renewed strength and peace. I haven't felt so close to God in a long time as I did holding my son and giving myself another chance to do a better job with him. Now he did have to take a potty break and I know he gets more from what is said than he is able to tell me. I often give people a blank stare when they tell me things like, "I don't know why my son is like this!" "I don't get it, why would God allow my son to be like this - I don't understand." To me, the answer to this quandry is simple. It's more about my character and my relationship with God than it is about him. I always come to the same conclusion although I never give the secret away unless I am begged. To do so would be telling the parent of a child with a disability that they have character problems God wants to address. It's not my job to say such a thing. But, Josh does add alot of joy and happiness to the world. But, to those closest to him, he is an instrument of praise, worship, personal and spiritual growth. That's most especially true as it relates to me!

Mom of a Son with Developmental Delays needs..................a handheld speaking device.

I was thinking that a talking handheld device with buttons would be so helpful. It would simply have a button for the 10 most used phrases that I repeat at least 50 times per day. Some things are just going to take some time. I wouldn't get so tired of saying those important things to my son Joshua over and over and maybe I'd laugh more instead. It would have a volume control so that he could hear me from anywhere in the house. I seem to have developed x-ray vision and a sixth sense. I somehow know what is happening even if I don't see it with my eyes. Maybe it's just that his behavior is very predictable. In any case, if you happen to know where I can pick one of those up, please let me know! It would help me keep my sanity at times. It has to have at least 10 buttons that say:

10. Stop Josh!
9. Keep your hands to yourself Josh!
8. Stay out of the refrigerator Josh!
7. Stop chewing that and throw it away!
6. No pushing, give that toy back!
5. It's time to go potty.
4. Pick up your toys.
3. Eat that in the dining room!
2. Stop banging it's not funny.
1. Be nice.

Of course, some of the most often said phrases don't need to be on a handheld device. Those would include, "I love you Josh," "you're too cute," and "you're a crack up!" Somehow I never tire of saying those!

Mom of a Developmentaly Delayed Son learns.............how to let go.

Sometimes something as simple as a kid's DVD can be enough to spark personal and spiritual growth in a parent. I've begun to wonder if some of them were written for adults! Well, anyone famliar with Veggietales knows what I mean. The kids can watch a Veggietale about love and caring and go right ahead and take a toy or push their sibling without a second thought. Yet, for me I could be very convicted to change my ways. I realize how simple these things really are to apply to my life. Take the story of the Angry Eyebrows. The evil villan creates flying angry eyebrows to attach themselves to everyone in the town. Whenever someone begins to lose their temper, the eyebrow attaches permanently and that person never stops being angry. But, the only way to get the eyebrows off is to let go of one's anger. It's as simple as letting go of the offense and just giving up the anger. Having Joshua for my son means I have to do this frequently over alot of things that might mean alot to me. With a new baby in the house over the past week, Joshua has been in overdrive in his attempts to get mom's attention. One day I walked up the steps where Josh had been just seconds previously and found a photo from my wedding torn to shreds. We had to install a key lock on the bathroom door because he threw toys in the toilet 3 times. Twice this required the toilet to be taken apart and reseated. I found a way to get the pens and markers out of his hands. So, he writes on the walls with certain toys that he knows will leave marks. His new extreme sport is attempting to surf down the steps head first on his back! I'm there to stop him everytime. He now has an obsession with the clothes washer. He opens it up while it's running and throws toys and clean clothes in! He'll come to join us as we sleep in the middle of the night with a pull up full of poo! He chews mail, erasers and leaves bite marks on every nice toy. He leaves bite marks on the library DVD cases. There are bite marks on everything! Oh and he loves to stop the dishwasher in the middle of a cycle. I could have angry eyebrows 24/7. Everytime I turn around there is a new pile of shredded paper and chewed up wads. He destroyed a framed wedding photo, and he loves to push his little brother around. There's so much more, but I've learned to let it go. I put Veggietales into practice everyday!

Mom of a Developmentally Delayed Son learns.........how to properly eat a PB&J

My son Joshua gets more out of a peanut butter and jelly sandwich than anyone I know. Not only does it provide good nutrition but it meets his sensory needs, offers endless entertainment and joy, and it gives him a chance to make a huge mess to get a reaction out of mom if that were possible. Forget my attempts to teach him to eat with good manners. Forget all of my careful training about eating neatly. In fact, forget using a plate! According to Joshua, eating a PB&J properly can be done in just 7 simple steps.

Step 1: Take sandwich off plate to ensure maximum number of crumbs on the table and floor.
Step 2: Peel off the top layer of bread and set aside.
Step 3: Dig fingers into jelly the best part, make a fist and suck some of it into your mouth.
Step 4: Dig fingers into peanut butter. Eat some and then smear onto the table and chair.
Step 5: Eat the bread. Carefully avoid eating the crust.
Step 6: Toss some of the excess sticky crust onto the floor.
Step 7: Make sure to leave the table before mom has a chance to wash hands and face. Try to smear the living room couch, walls and other random places.

If you believe his way of eating a PB&J is random and incidental, then you're wrong. He has a plan and a purpose in mind. Among his purposes are to get a reaction out of mom, to create a mess, and to create laughter and enjoyment for himself in the process! In fact, Joshua is working on his next book entitled The Purpose Driven Meal. The book includes a whole chapter on the beauty and potential of tomato sauce.

Mom of a Developmentally Delayed Son discovers........balloons everywhere!

For several months now, I have noticed that whenever I am out with my son, he begins talking about balloons. I'll say something like, "OK - there are no balloons here Josh, I'm sorry." Yet he keeps on talking about them and jumping up and down. For the longest time I couldn't figure out why. Then, he learned to point to communicate and finally I realized that there really ARE balloons EVERYWHERE! Now everytime he starts talking about balloons he points up and there is ALWAYS a balloon. There was a helium balloon stuck on the ceiling at Walmart, church, Dominick's, Target, Walgreen's, Jewel, Giorgano's and IHOP to name just a few. Josh must really think alot of me because he really believes that I can retrieve them for him! Well, sometimes I can..... He can even see them going up to the sky. Josh loves to let them go and watch them fly into the air. The only problem then is that he no longer has a balloon to hold! Next time you wonder if there really are balloons everywhere just take Josh along and....look up!

Oh Christmas Tree, Oh Christmas Tree!

Oh Christmas Tree, Oh Christmas Tree, how mashed up are your branches! I keep hearing from my friends that they just haven't found time to put away everything related to the Christmas holiday yet. The Christmas tree is still up with Martha Stewart perfection. Lovely glass ornaments, cherished knick knacks, elaborate ceramic village displays and so much more. Well, at our house it's usually only the Fisher-Price Nativity set that survives year to year with a few bite marks and minor damage. Joshua had his best year ever with the Christmas tree. He actually helped make and put ornaments on. But, as we got close to Christmas Day he found a grand new activity. I went to the washroom upstairs and he figured out how to take the artificial tree apart and pull it out of the stand. Most of his life he has done this with a natural tree as well but it spills water and real needles everywhere. So we opted for an artificial tree that is pre-lit so he at least can't take off the lights. Anyway, while I was in the washroom for about 30 seconds, Joshua pulled the tree (he removed all of the ornaments and garlands) up the stairs and brought it to me. Then, he was whinning, "mama, fix tree, fix it, fix it, boo hoo!" Okay, so I learned that even artificial trees under these conditions lose needles everywhere and lights do blow out. So I went downstairs and put it back together. Joshua is really obsessed with the lights so I turned the tree on. Josh jumped up and down pointing with his finger and saying, "ristmas reee, rismas ree!" Realizing that I was not going to be able to keep the plastic ornaments with ribbon instead of metal hooks on the tree, I put them away. I opted for the ribbon since Josh would pull off and chew on the metal  hooks! I hoped to explain that the tree is a decoration rather than an oversize stuffed doll. But, he doesn't get it yet. I wish I had a video. Alas, Joshua went ahead and took the tree apart about 3 more times in the 2 days following Christmas. Realizing that Martha Stewart would be horrified, I put the tree away for next year. Now it lies mangled up in the garage waiting to be properly put away for next year! Poor Martha, she would NEVER dream of setting foot in MY home! It's a good thing we have friends like the VanWijks who quite enjoy the comedy of these things and enjoyed Thanksgiving with us. Maybe I should start a new reality show. I'll call it, Martha's Nightmare. I'll make millions!

Mom of a Developmentally Delayed Son wakes up to.................Jingle Bells!

The most interesting thing about living near Chicago is that the weather can change faster than my Joshua can make trouble around the house! For weeks we've had these subzero temperatures and snowstorms. Now today we have thunderstorms and a high of about 50 degrees! I heard a huge crash early in the morning with no lightning and thought we must be under a terrorist attack! Then, I heard rain and later saw lightning and realized it was just the weather. Well, Joshua woke up and came to snuggle with mom as did all of the other kids. So much for a king size bed for having enough room to sleep! So, he was sleeping and then suddenly sat straight up in bed and started singing his own rendition of Jingle Bells. After awhile it dropped off into something else. But, this was better than Folgers for the best part of waking up! "Beeble, baa, beeble baa, beeble baa, baa, baa, beeble baa, beeble baa, diga diga diga, Je-sus, Je-sus, my Jesus....deegaaah, dooga, dooga, dogaa, digee, digee, haaa, haaa, haaa, I go potty, I goo poo poo pease ahhhh, hahaha digeee digeee digeee digeee, I go eat pease........." I had to get out here and post it. Now he is playing basketball, his favorite sport. I can't wait to get him out to the basketball court in better weather. He loves playing it with the big boy neighbors! I've got to go now. I go pee, I go poo poo, I go eat - pease!