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!