A mother's desire to complete the Aspergers puzzle and connect with her beautiful son
Monday, April 9, 2012
Where is God in all This?
Yesterday was Easter. Children everywhere bounced out of bed eagerly waking their groggy parents to check their baskets to see what Peter Cottontail left. While they shoved their mouths full of jelly beans and chocolates, their parents protested trying to convince them to eat their breakfast instead. After a hearty Easter breakfast, they all dressed in their Sunday best and headed to church. Sure there may have been grumbles from their children about how they didn't want to go or church was boring. While others may have quietly assumed their role of attending weekly church services. For many it is just what they do. It's Sunday, you go to church.
As I walked into church yesterday morning, I can't help but want that. Jacob is by my side, with my husband and sick baby girl at home. There was no complaining by Jacob. In fact, he walked in excited that his grandparents, aunts, uncles, and cousins were there to sit next to him. We settled in to our seats early. I know from experience that we must be first to arrive to get Jacob settled. I know that church can be hard for Jacob, a lot of sitting still and being quiet, both things very challenging for him. Strange people, some that say hello and he is unsure who they are or how they know him. Sometimes the music is too loud for him, and sometimes he loves it and just wants to dance. It's not that he doesn't like the music. He knows all the songs by heart and has listened to them faithfully since he was little. And so at church I have learned to expect the unexpected. I never know how Jacob will react. As we sat there in church with my extended family and Jacob's aunt to his right, I talked him through what was going on. He inquired as to the instruments at the front that were warming up. We wondered together where his uncle would be standing in the choir once he entered. We discussed how kicking the chair in front of him was bothersome to his cousin. And then it happened. I could see the look of panic in Jacob's eyes. The band had started to quietly tune their instruments. The church was beginning to fill. And Jacob was becoming aware of it all.
"I need to get out of here," he told me. "I need out now."
He didn't yell it. There was no fit to draw attention to us. But I knew we had to act fast. I could see the panic rising as he was trying to figure out how he would escape this crowded room if needed. It was all too much for him.
We walked out into the lobby area to access the situation. Together we tried finding a solution. We walked in and out, in and out, while Jacob was processing what would be a good place for him and not be too loud or crowded. Thankfully at this point my sister who was working in the nursery stepped out. Although intended for babies and toddlers, she invited Jacob to join her which he readily accepted. The nursery was safe for him. It was comfortable. He knew what to expect as he had been there many times over the last few years.
With a heavy heart I headed back into the church just as the service was beginning. As I looked around at all the families worshipping together, I couldn't help but want that for my family as well. As the service continued my mind was with Jacob. It was hard not to think of my six year old son sitting in the nursery out of fear, while I watched these young kids walk up to the front for the children's message something I know my son would never be able to do. The sermon began with a wonderful message of hope. The pastor asked that we give our crown of thorns to God. To let go of our worries, fears, and struggles. Let me tell you, I have plenty. If you were to ask my husband he could tell you how I constantly worry and am scared of everything.
But at that moment I prayed for God to take away all my son's fears. I prayed for Him to calm Jacob's mind and give him peace from all his worries. And I prayed for Him to give them to me. If anyone had to have them, let it be me.
It's so hard to see your kids struggle or hurt. It's even harder when you are helpless and can't take it away. A fever? Nothing a little motrin can't help. A tummy ache? A little Sprite and snuggle time in bed. Even severe hives like my baby girl had over the weekend. Scary, yes, but we knew what we could do to help alleviate her pain. But how can I take away the thoughts that plague my son? How do I take away the worries and fears that I can't fully understand myself?
I want nothing more than my son to be a carefree little boy who doesn't lay in bed at night and obsess about why balls roll down the street, and what is going to happen to them if someone doesn't stop them. I want my son to be saving his money for a new bike, but instead the $42 in his wallet he is saving to buy a new house for us to live in, one NOT on a hill. I want nothing more than to see him enjoy the pinata at his sister's birthday party instead of standing outside the door to our house ready to bolt in case it "explodes". I want so much to understand why the shape of the letter G in his new computer game bothers him so much he isn't sure if he wants to play it again. I want nothing more than to take him to the doctor that he has begged to see for the past two weeks, but anyone with a child on the spectrum knows it is a lengthy process. I want nothing more than to help my son.
And so many times at night when he is scared and all the thoughts are flooding his six year old head, I tell him to pray, to ask God to help him to not think about those scary things. And he does pray. It breaks my heart when I hear him asking God for help. Where other kids his age are praying for "important" six year old things, mine just wants a clear mind. But then the hard part comes when he asks the difficult questions of why God isn't helping him. Or why he keeps having scary thoughts if he prayed to God. In his innocent mind he views God as magical. It's the only thing he can associate God with. God is a hard concept for any child to understand, and even harder for a child like Jacob who sees things so black and white and is a visual thinker.
You may be thinking I am questioning God, or that my faith is wavering. Where is God in all this? It would be easy for me to turn away from Him. To question Him. To be angry at Him. But I know where God is. He's right here beside me. He's giving me the guidance I need. He's helping me find the words to calm my baby boy at night. He's giving me the patience I need. He's showing me the path Jacob needs. He's right here.
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I have been reading all your posts for the last few months. My son is 5 and please believe when I tell you he is very much like your baby boy. I am sure you hear that a lot, but if you could be a fly on the wall in my home for a day I truly believe you would feel right at home. I am scared to take him to the right doctor to find out if something is in fact ''off''. He's getting older and I know as his mom that I need to get some answers, no matter what those answers might be, God knows I need some. Your posts encourage me every time I read them, and more then once have brought tears to my eyes because I can feel the love you have for your son in your words. If you don't mind, maybe you can help me, I don't know what to tell my son's doctor, about his behavior. I truly don't know how to begin this whole process. Besides that, thank you so much for being so honest and open with your posts. I hope we can talk some more.
ReplyDeleteTiffany, First thank you so much for faithfully reading my blog. That means a lot to me! I can relate to your feelings so much. I knew since my son was a baby that something was off with him. I would spend countless hours reading books or articles online, and everything always pointed to Aspergers or Autism. I tried to find other explanations, but it always came back to that. I admit, I was scared for many years to get my son diagnosed. I didn't want him labeled. He was so intelligent, sweet, and kind, I didn't want people to have a preconceived idea of my son just from a diagnosis. It wasn't until I realized he was getting a label at school of a behavior problem that I knew we needed to do something and get an official diagnosis. Getting a diagnosis was scary, but the best thing we ever did. Once we got the diagnosis, we kept it quiet for a while, but then realized the best thing for our son was to make people aware so they understood him.
ReplyDeleteI will say that our pediatrician dismissed many of our concerns. Even though I had brought them up for years, he didn't seem concerned because my son would talk to him and appeared "normal" while in his office. I have heard that from many other parents of children with Aspergers as well. Many pediatricians want to take a wait and see approach until the school recommends something. Our local children's hospital had a waiting list of 6 months to get in to be evaluated. Finally I connected with another mom who I knew had a son on the spectrum, and she recommended a private practice to diagnosis our son.
For us the diagnosis was a relief. Getting there can be a lengthy process, especially in some areas where there is not a lot of resources. I would get online and look to find a pediatrician that specialized in pediatric developmental behavior health or neurodevelopment disabilies. Also please feel free to email me directly at whatlookslikeordinary@gmail.com. I will gladly be there for you through the whole process and help you as much as I can. ♥
You are an amazing lady. I am so glad I found your blog. And yes I do check back everyday for your new stories. I am scared for my son, I don't like labels and I never thought I or someone else might label him. But I do understand he is getting older and we are about to start kinder garden next year. My son can't not handle the 3 hours he is in pre k everyday. It is a constant and endless struggle to get him ready and leave him there. We go threw it all, crying, screaming and holding on to my legs for dear life, which makes me wanna say ''okay my baby, come home with mommy'' but I know I can not do that anymore. I am also horrified for him to start school and have problems with bullying. I never thought I would have to think of these things but seeing how my son is changing and behaves I just can't help it. With all your advice I will be finding the right doctor to take him to. I just have to take the first steps and be brave for him. Because everyone who is close to Nicholas knows hes a beautiful and smart boy. I just hope everyone gets to see how truly amazing he is. I hope you have a beautiful day tomorrow and I will be keeping you posted. Thank you, for being so open and kind.
ReplyDeleteThank you so much for your kind words! I am thrilled you enjoy my blog and thank you for following it. Your comments reminded me so much of myself when Jacob was in preschool. I felt the same way. I was so scared to have a label. There were many days,(and we even still have some) where I wanted to just turn around instead of taking him to school. So many times I felt like I wanted the rest of the world to just disappear and keep him in his own bubble at our house where he was loved unconditionally. I wanted nothing more than to shelter my son from all the wrongs in this world. I do hope you find a doctor. I was terrified, but it was the best thing we ever did. I feel like we are on the right track. Just remember nothing changes once you get a diagnosis. He is still the same sweet, beautiful, smart boy. Keep me posted and feel free to email me directly if you would like at whatlookslikeordinary@gmail.com ♥
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