Mom of Developmentally Delayed Boy says..............my son has a future in baseball!

Well, there were 3 toys on the roof. They have been there for a couple of months actually. I thought the wind would blow them down or they would get pushed off by the hail or rain we've been having. You would think on those many occasions lately where we've had tornado force winds, that would have been enough. One was Josh's favorite baby girl doll, the one with the pouty look on her face. Josh picked her up and held her in her arms and refused to let go so I could wash her. I said, "well Josh for someone so concerned for their baby girl you only threw her on the roof and left her there for 2 months!" One toy was a plastic bendy man and then some kind of little stuffed spongebob from Burger King. I had told Josh the first time he did this not to throw toys on the roof. What would I do without all of Josh's teacher helpers who give him a small toy daily at school? I had wondered where they were disappearing to since I have to pick up about 150 of them several times a day it seems. I hadn't seen him throw toys on the roof lately but does that mean he didn't? If you've been keeping up with my blog you know the answer to that question is NO. So, today they were all playing nicely with puppy in the backyard so I decided it would be a good time to set up the ladder and pull the toys off the roof. But, what I discovered was many toys and things - in the gutter. There was a plastic bowling pin, a rotting baseball, pieces of sidewalk chalk, McDonald's toys and I don't know some things were barely recognizable. I wonder what other habits he has that I know not the extent of. So, I found more on the neighbors side of the gutter too that he threw way over to the next yard. Josh's new career option: baseball of course. That boy can pitch! Josh signs up to participate in the Special Olympics in 2 years and now I can say I've been working very hard in training him for the events! Who says a person with a cognitive disability couldn't get into professional sports too? Having Joshua on the team might improve my husband's Chicago Cubs standings! Well, even now he could help out. Just send him on the field to create chaos and distract the opposing team. We can call him the mascot!

Mom of Developmental Delayed Son goes.....................beyond Supernanny!

These past 6 years raising my son Joshua have taught me that parents of children with moderate developmental delays who are mobile are probably the most amazing and best parents in the world. However, no one would realize it as a passerby in their lives. We are the ones who trained the "supernannies" of the world. We take these experiences head on everyday with little fear. Out of necessity we have a support network of people to help us hold our heads up everday. I have realized that this is miraculous and not of my own doing. It's sort of like Superman who came into contact with some supernatural power that changed everything. If I sent my son to supernanny's house, she would be running away in tears after a short time with him. Yet, parents of kids with moderate developmental delays who are mobile take such events in stride on a daily basis. Imagine the horror I felt when I turned around after 5 minutes and realized my child was not in the house, then I heard the doorbell ring and there were 2 police officers with my son! They tell me that 3 people had to chase him down and that he runs very fast. They try to tell me that they are parents too and they can understand. But, it doesn't stop that horrible sinking feeling and the feelings of inadequacy that quickly begin to beat me down. I can feel the acid in my stomach churn and my blood vessels constrict.The tears roll down my face and I pray because I am a good, responsible mother who is simply facing something far beyond normal child raising. Doubts arise and I fear for my son. I am no more perfect than anyone else in securing my home and keeping my son in it no matter how many locks and alarms I have installed on the doors and windows. Will people question my ability to care for my own son? Will he still be doing this at age 18? Now I know this is far beyond normal consequences and priviledges. Providing lots of structured activities and outdoor play doesn't stop him either. A behavior chart does not address this and neither does safety education although we HAVE tried all of those things. Then, out of my ashes, the Lord comes to my rescue. A friend tells me that she has cared for children like this before and has had escapees. She happens to be one of the best, most experienced moms I know. Another reassures me that I am a good mother and that I can stand through this. I'm not going to break or give up my responsibility to someone else. God reassures me in His word. I begin to think of new strategies. I revise my ongoing list of ideas and strategies to research. I move on with my life somehow just a little stronger, just a bit more humble each time I am knocked down like this. You see, the problem with supernanny is.......she is not real. Real moms admit they don't have all the answers and they are not afraid to fall, even if they would rather not. Reality requires brokenness, humility and personal growth. The next day, I took the advice of a good friend who has a grown son with Autism. She says when I'm having a bad day, to do something fun and enjoy my child. So, I took Joshua and his older sister to the waterpark and a friend watched the little boys. I can't remember the last time I had so much fun with Josh. I was of course, a mother hawk over his every move stopping him from running towards the deep pool, keeping him from taking other kids' toys....holding him on the float in the lazy river. Laughing together as the water sloshed on our heads was healing from the previous day and it's tensions. On television, one person has ALL the answers, in true reality - no one does. My life amounts to more than any reality show would dare even propose.

Mom of a Developmentally Delayed Son...................uses Child Directed Play Therapy!

I'm not sure how other parents who have children with developmental delays go about protecting their child from danger but we have a sliding back door with the following features: toe lock, flip lock, metal bar lock on top, and an alarm that goes off if the door is opened. As it happens over time and with much use, the bar lock on the top of the door broke off the side of the door. Unfortunately, that is the only lock that my son is unable to open. Well, as I turned my back to use the washroom, he found out that he could indeed open the back sliding door. He routinely checks the doors in the house to determine his ability to find new and exciting things to do. No matter how many structured activities I might provide, he is still searching for more. On this day, he found it. A heavy rainfall had left a massive puddle in our backyard along with areas of saturated mud. When I returned from using the washroom, my other children were still eating breakfast as I was hoping they would do. Yet, where was Joshua? I'm sure you can guess by now that he became covered in mud from head to toe and was happy as could be romping around the backyard in and out of the mud. He threw mud on the siding of the house, on the back windows and all of the outdoor toys. I wish I had my camera. The thing is when these things happen I don't think of taking a picture. I'm strategizing a method to clean up without making a bigger mess by tromping it throughout the house to the bathtub. With his sensory needs met, I provided a bit more added therapy. I got out the hose to spray off the mud. One might think this would bother a child, but he loved it and laughed with glee. Some residue of course still stuck to his skin so then it was bathtime. Since Joshua recently flushed the bathtub plug down the toilet, we settled on a shower instead. This activity provided more sensory stimulation and fun for Joshua. I scrubbed and rinsed him off and then he of course needed to get dry. "Need towwwel, need towwel," he cried. You might wonder how I was feeling about all of this. It was after all a major detour from my plans for the day and the very important other things I needed to accomplish such as feeding Joshua's baby brother. I was fine when I saw him smile in the backyard while I was spraying him with the water. That's when I broke out in laugher and started enjoying this with him. When Dan came home it was obvious what I had accomplished. "What did you do today?" "Oh, I gave Joshua a Child Directed Play Therapy Session Dan!," I said in all seriousness as though I were a Developmental Therapist. Dan knows what that means though and right away he said, "what happened???" We enjoy our son, if we didn't we most certainly would go mad. :)

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.