This blog has moved....

WOW, I forgot to link this old blog to my new one. About the same time that we received Joshua's official Autism diagnosis and tested IQ of 43 not long after he turned 6, I created a new blog called Musings of an Autism mom as we discovered it and had him tested just after we began our Son-Rise program. I was reading over my old blog posts and realizing that they were pretty good for being in the middle of what I was going through! So, if you have found this blog or want to learn how things are going now, you will want to read the new blog!

Mom of a son with Developmental Delays says...........Hand me a Hymnal!

Every time I bring Joshua downtown to see the doctor now he says, “I go church….I go church!” He has a routine down for our visits and it goes something like this. First, we stop by St. Paul’s Lutheran right across the street to pray, then we go see the doctor. After that we visit McDonald’s in the basement floor and visit with the life size Ronald McDonald mannequin. I have broken the routine once or twice to his great disappointment. Hard as I try, I can’t make it a perfect world for him. But, today things went as planned.  The first time we stopped by St. Paul’s I had no intention of doing anything but finding a quiet place to pray. On the outside the building is unassuming, humble in comparison to the massive 10 – 100 story monstronsities surrounding it in downtown Chicago. It’s appearance there is almost miraculous. There are gardens in the midst of concrete superstructures with cars flying around it in every direction as fast as they can possibly go. If the buildings around it could talk they might say, “That little building is irrelevant and old. I cost bazillions to build. I’m much more important. When will we bulldoze it and build another skyscraper I want to know!” On the outside the windows and walls are built and decorated with carefully crafted stonework in equisite detail and the stained glass windows appear to blend in on the outside as if they hold nothing unusual to the eye. As I entered the sanctuary I heard the sound of organ music. This was not just any organ music. It was the kind of majestic organ music that takes a person a lifetime and many hours of daily practice to master. Even though the sky was grey outside, the light was streaming through the windows putting on a glorious display of light all around. I found stone archways, magnificent ceilings and old style pews lined up in straight rows. Josh says , “WOW” with a whisper of a voice because he is amazed. Now my Joshua has sensory integration problems and normally loud noise and too much visual stimulation would drive him mad but he loved this so much that he did not want to leave. I have since realized that my son loves the music because it is not random sound. It is perfectly organized sound with precise detail. The light that streams through the windows is organized into amazing pictures and there are two disk shaped kaleidoscope windows where the colors are aligned in a carefully designed display. Many perfectly arranged details make sense to him. So, we talked of the windows, John Huss, St. Augustine, Solomon and more. Josh knew the ones that portrayed Jesus as he started saying, “Jesus!” I found myself picking up the hymnals and found some of the great, old hymns of faith. In reading over many of them and singing them I realized the depth of meaning in all of this. I was reminded of Jesus’ suffering and felt that deep understanding and compassion I so desperately needed to feel in my heart. In since learned that this building was first built in 1857 and was destroyed two times in the Chicago fires. Going to that old church is no different from entering into prayer. As I’m going along in my daily life stopping to pray seems like such a small, weak, mundane, old, irrelevant thing to do in comparison to all of the monstronsities of life I must face daily. Yet, once I enter in I find peace, hope and all the compassion I ever needed. But, I would not have been able to experience that unless I made the decision to enter in. You have to stop and go in to experience it. Going there doesn’t solve all of my life’s problems. It’s not going to stop whatever painful circumstances I will face in the future. But, it does put all of life into proper perspective and give me the strength to carry on. Maybe it’s because I attended church as a child surrounded by stained glass windows, organ music and I sang from a hymnal. But, in this modern world where most church services don’t include hymnals or even more than one stanza of a classic hymn, I say, “hand me a hymnal!”

Mom of son with developmental delays gets inspiration from......................Fernado Ortega

If I ever get this published as a song, I would have to get permission from Fernando Ortega and it would have to have that so so mellow feel and that touch of humor that is so uniquely Fernando.

You’re the 1^st light of my morning, you’re my sweet sunrise. You’re like fruit loops on the table, there’s no sleep in your eyes. Will it be tears or smiles as we start our day, will you go along with my plans?

Some may only see the handprints on the walls, the broken glass, this home is so small, my hands are so weak, the burden too great. I’ve never been so poor yet so rich at the same time. Your yelling and your tears and your throwing a fit is not too much for Jesus. If you smacked Him, bit Him and pulled His hair because you just didn’t understand, He’d never send you away. He’d come to find you because He knows you, He’ll show me too.

Thank you Lord for seeing beneath the surface of who we are. There’s so much more to you than meets the eye. Somewhere past the tearful timeouts, banging your head, the hitting and the spitting, there’s a brilliant mind and a beautiful soul waiting to be unlocked. I never thought I needed so much grace until there was you. But you can have some too. I love you sweet son of mine.

Someday up in heaven you’ll show me all around and go off on your own sometimes. No matter what you want to explore you’ll always be safe and unharmed. Then, whenever you’re ready I know you’d come back to me. But God just for awhile keep him safe by my side down here where dangers out number the hairs on my head and mercies are so few for to beg.

To Jesus it doesn't matter if it's your 3rd timeout today. He'd just knock on the door, we'll let Him in and then He'll put you on his shoulders and say, "Let's go splash in the water and fly through the sky. I can move the mountains for you. I know just what you're thinking. I made you to be exactly who you are right now. I'll never get tired of playing with you and doing what you like. I love you sweet child of mine."

Mom of a son with a cognitive disability...............shuns conventional wisdom.

WOW! So, yesterday I learned that many people, even people given a piece of the task of helping my son with his various behavioral challenges don't understand his condition. Well, I must avoid the details of this event so as not to appear that I am not appreciative of everything others do for my son. Let's just put it this way. My daughter at age 2 used to laugh in timeout, and would laugh about consequences for behavior. I had one person say I must not be harsh enough. Another person actually said that I lack some sort of mystical bond they could not explain to me how to get that I should have with my child that would immediately correct such an issue. Another said that I have not earned her respect. So, what are those people trying to say? Are they saying that I must lack some level of support from my own parents so I can't adequately help my child? Do they not believe I have taken responsibility? Are they trying to say I am incapable or don't understand love? Are they saying she ought to be spanked? In any case, such people seem to put the blame on me for this as though if only I were doing my job as well as they could these things most certainly would never happen. Well, my daughter grew out of that phase as many 2 year olds do and is now a very well behaved, intelligent and loved 8 year old. She is the product of responsible, loving parents who have disciplined and instilled a sense of responsibility and trained her properly. I am as imperfect as any other parent in my efforts and always growing. However, my son who is now six years old and still responding to discipline the same way as my two year old did earns me the same remarks. It was actually suggested to me yesterday that I have a talk with my son about his various behaviors because certain ones just are not supposed to happen. I wonder how she supposes I go about such a magical talk that would take care of his every challenging behavior and make him a normally developing child with perfectly acceptable behavior. I wonder if she is on some much higher plane of humanity than I that she has the answer! She should go on TV and share her secrets with all! I wonder if she had her thinking cap on yesterday that she actually told me that she knows "all about kids with disabilities" and what they do. She must be a grand source of wisdom. It's either that or my son's behaviors were driving her crazy and the truth is that she is simply not patient enough to cope and took out her frustrations on me! As always, it's actually a good thing I am his mom and not someone else! Maybe it didn't help that I smiled and said, "yes, he does that...." and almost laughed. I am learning to shun conventional wisdom when it comes to my unconventional son. He requires a completely different approach and one that accepts him and loves him as he is first. My job as a parent is going to be connecting with who he is. I'm going to implement a program at home that can do just that in fact! But, not many would understand such a program, it's not conventional wisdom. Increasing the consequences, spaking him, pushing him harder, or getting mad just are not solutions for him in the short term or the long term. Others just don't seem to get that. Oh well. Josh doesn't really care and he doesn't even understand if he earns himself a written warning for spitting! They truly haven't noticed yet that he cannot follow district student behavior guidelines? I do care in the sense that I will advocate for him as he requires certain accomodations for his behaviors. But, I don't care and I don't understand a written warning. It's meaningless in his case. Now, of course I will tell him not to but come on now, he uses a special STAR seat on the bus because they cannot not guarantee his safety in staying in his seat and they believe I ought to be able to control his spitting when I'm not even there? I can't guarantee he won't spit when I'm sitting next to him and neither can anyone else! My son is a work in progress just like your average 2 year old. He just so happens to be in a perfectly functioning 6 year old body! WOW - so maybe the next step for such a "professional" is to call DCFS? Good thing they know the difference between neglect and Autism/PDD/MMR because I'm sure there are people convinced I don't know how to care for him and would like to see my son taken away. Fine, put me on trial, that's conventional. It's a good thing there are people out there who do understand that a disability is one thing and a neglectful abusive parent is another and that the two do not go hand in hand. Pray for me my friends!

Mom of Developmentally Delayed Boy............. changes her name!

We love our completely atypically developing son, no matter how much heartache and pain sometimes just happens. My blog has been written specifically to avoid the negativities and the details of painful and trying times. It has been written to help me and anyone else who would benefit to feel better. Move over Supernanny, make way Tigermom..... the new term for mom of a child with cognitive disabilities is SPIDERMOM. I have weaved my webs of hundreds of phone calls to make connections so tight - no good opportunity will escape me to obtain services. So, I wanted to hit myself in the head with a hard object such as a brick and beat myself up some more for not realizing this fact. Many children who have the tendency to wander are not children of bad, neglectful parents who ought to be jailed or hung by their toenails when wandering incidents happen. Some are, and some are NOT. My husband and I are NOT. The question is, why did it take me dozens of incidents (99% or more of which I immediately rescued my son from before anything negative resulted (see my Superhero post) before I would realize the child needed an Autism evaluation? Why did I not consider medication an option before? OK, so the first doctor who gave us a diagnosis said he was not Autistic and did not have PDD. That must be why. But, who disabled my spider senses that I wouldn't know better than to second guess this? That doctor also did not tell me that later on, my son would require a behavioral diagnosis which is different from a diagnosis of his level of cognitive functioning. No one could explain that unitl now. I had to bring Joshua into emergency psychiatric intervention to have these things explained to me. It seems I could not find proper help prior to now because he was not in a crisis situation. I'm thinking, "NOT FAIR." But, I won't be overcome. I have supernatural forces on my side! Children who have the tendency to wander off are most often on the Autism spectrum. In fact, this October there will be a new medical diagnosis for children prone to wander. Would you know what to do if you have a child who is prone to wander off? Here are a few more important facts everyone should be aware of. People who have Autism whether young or old have a high mortality rate due to the tendency to wander. The biggest reason for death is drowning. How many times have I heard of children with cognitive disabilities drowning, being murdered by their own parents, abused, put in cages, tied up or any other number of horrendous things I won't even discuss here? People don't know, don't think and don't realize that this is not a bad child. This is not even a dumb child. This is a child with unbelievable POTENTIAL that he can pick up on the nuances of situations to know how to do these things!!! It's up to me to UNLOCK it. He's probably smarter than any of us - how else could he be able to do the things he does do? WOW - people are not aware. I suppose many parents of children who have these kinds of challenges are not aware and do not seek help. Here's my safety tip from your friendly neighborhood SPIDERMOM. If you have a child who has wandered off from your presence and has the tendency to try, DO NOT DELAY. Visit the website http://www.awaare.org/ ASAP. It took me 2 years to find this most amazing resource where they even flat out say it and I like reading it over and over. Wandering incidents do not necessarily mean a parent is neglectful or not providing excellent care in the home. Children like my son are looking for that one moment where I might be for instance getting groceries from the car, using the washroom, taking a quick phone call or putting laundry in the washer. They are not dumb - they are not under stimulated, they don't leave for the sake of something bad happening at home, and it's not for a lack of structured activity and attention. In many cases, it is a lack of impulse control and desire for chaos and over the top excitement. For most children, having the police come out is an undesirable consequence. For children with Autism, it only increases their motivation for the thrill. So, with that being said, many children who receive a PDD, Autism or other diagnosis involving severe cognitive deficit have actually overcome or at least greatly improved. That's where I will leave you with another resource: http://www.autismtreatmentcenter.org/. The only outcome I've ever heard of using the help of the public school alone is a child on medication forever and living in a group home as an adult. Better outcomes are possible. But, it takes a higher level of commitment to parent training and involvement in the life of one child than I have ever imagined. It's like Spiderman 3 where Spiderman teams up with his best friend/worst enemy or else he knows he will be slaughtered because the enemy is simply beyond even his own power. No matter what people think of me, no matter how negative a relationship I may have with certain people, I have been left open to begin enlisting the help of trusted friends and even some people who are that "frienemy" with whom I have many disagreements and conflict, yet deep down we love one another anyway. The loves of my life depend on it. With great power comes great responsibility. :)

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.