Wednesday, July 15, 2009

The Disappointing Times in Autism

(Below are Nicole's thoughts on Chapter 15 of Just Enough Light For The Step I'm On. Please know that what we all learn in a study is usually different. Therefore, we ask, if you feel like it, please leave what you got out of the reading as well. We're sure you'll lift someone's spirit.)

Chapter 15, Surviving Disappointment...I think we all as mom's to children with autism have experienced disappointment. I remember the day my son was diagnosed like it was yesterday. I'm sure you all do as well. I felt like the lady who was testing my son failed me. I felt like I failed my son. I felt like God failed me. I remember getting to my car and looking at my husband and telling him "I just don't want Sean to feel like he's disappointed us." It was very tough. How do we as mom's deal with these emotions we feel through this incredibly difficult journey with autism and the constant disappointments? How do we help our child survive a world in which we feel people are constantly failing us? What should we do when it feels like all the walls are crashing down around us? Stormie says it perfectly in Chapter 15 on page 132.....If you will maintain a humble, submitted, faith-filled expectant heart, you will see God's goodness manifest in the midst of all that's happening to you.

Unfortunately, autism has effected our family. It happened to us almost three years ago. Ever since that day, disappointment and failure has happened a lot as well. Therapies that we had every hope in working that didn't, supplements that helped one child and back fired on us, friends who consistently compare what my son is doing to what the character in Rain Man did, family who constantly question what we do, the public schools, private schools....the list could go on and on. I always wonder "what if we didn't get the shots?" "I should have noticed the signs sooner." "We should have started therapy sooner?" "Why didn't I try the diet when he was first diagnosed?"

The one thing we have to keep in mind that Stormie writes as her first sentence in Chapter 15 is....Disappointment is inevitable. Everyone's life is full of disappointments. Whether a mom to a child with special needs or a mom to child who has no difficulties what so ever in life, your life has disappointments. We all have our own cross to bear. What we do during these disappointments is what matters the most. On page 131, Stormie says....We make a mistake in expecting too much from ourselves, other people, and life, when our expectations should be from God. I believe that what Stormie is saying here is that when we are living our lives for God and wanting His will to be done, our disappointments don't seem so tough. They are still there but they are easier to deal with. Stormie also compares it to a big work project that fell through and how she had to ask her husband if this is more important than God's will? Now, I'm not going to lie to you, when I first read this I thought "Ok God, I get that situation but we're talking autism. Not a work project. This is my child." The very next thing I felt was from God. He's my child too. Trust Me.

Stormie continues on page 131....God often allows hard things to happen in our lives in order to bless us in some way. If we are willing to allow for that possibility in everything that happens, it saves us from being devastated by people and situations that are ultimately going to be used for God's glory. On page 132, Stormie talks about the Israelites....Instead of choosing to see God's hand in the moment, they blamed Moses and God for everything that disappointed them. As a result, their suffering was prolonged.

So now, I want to go back to the question I asked earlier....what are we as moms who have children with autism supposed to do as we and our children are faced with disappointment? On page 132 Stormie answers this question for us by saying...

When disappointing things happen to you, ask God to help you discern His truth about what you are experiencing. Ask Him to reign in the situation instead of your feelings. It's easy to go with anger or hurt, but far more rewarding to find God's blessing in the situation instead. It pleases God when you have faith enough in the midst of your dissapointment to put your hope and expectations in Him. (Stormie Omartian)

In other words, when that new supplement isn't working, when my son gets overwhelmed and seems to regress when we're on vacation, when the school system has failed me, when my own family and friends have said hurtful things and even when I think back to that day my son was first diagnosed with autism instead of being hurt, mad and resentful I'm going to stop and pray to God. I'm going to pray like Stormie mentions in Chapter 15 that He will show me what I should get out of this. I'm also going to live my life the way He wants me to live it so that when disappointment/failure comes my way, I can handle it. I won't doubt the situation, myself or God. I will know that He is there with me helping me through this time and that right around the corner is a huge blessing waiting to happen.

Dear Lord,
Thank you so much for bringing this wonderful book to our study. I pray that You will help us when we feel disappointed or like someone has failed us. Help us feel Your arms around us when we need it the most. I pray that when we first feel the disappointing times in life we come running to You instead of from You. Help us learn from You quickly so that we don't prolong our suffering like the Israelites. I thank you for all the moms reading this today and pray that You protect us, our children and our hearts through this journey we are experiencing called autism. Help us see the good in the situations where we need it the most.
In Your name we pray,


Jessica said...

Wow, did I ever need this chapter and post. Thanks so much Nicole. Yesterday was Matthew's first IEP meeting and it was a huge disappointment, to say the least. It was as if I was re-living all of the feelings from his initial diagnosis. I definitely was visited by the "What ifs", what if I'd: somehow didn't do enought for him, gotten therapy sooner, tried harder to find other educational placements, advocated better, etc., but I know I did the best that I could have done for him. For some reason, this is how it went. I am praying for an open heart (and eyes) for whatever God wants to do through this situation.

In all of this I was greatly blessed by this chapter and your post on it. Thanks Stormie for the wonderful book, Nicole for this post and most of all to God, who soothes our hurts, strengthens us and leads us through our disappointments to where He knows is best.

Chrissy said...

This post really touched me, Nicole. I was up almost all night thinking about my disappointment in myself. Why didn't I catch the signs earlier? Why didn't I push harder when the doctors ignored my initial fears? What if I started therapies too late? The list goes on.

Sometimes, I think I need to carry around my own billboard that says, "You are HERE." In other words, forget about the past, forget about the plans you had...just deal with right now and pray about it.

Nicole Collins said...'s funny how I was suppose to write in the blog and have it ready to post for first thing in the morning and we had all kinds of internet problems. It took us forever to get it fixed. I really see God's hands on that to give me more time to really pray over what to write in the blog. I'm glad it helped you. I too am very thankful for Stormie and this book. It's amazing how I see her words guiding each of us through these weeks.
Chrissy...I love the idea of the billboard. I think about Sean today. He doesn't care what happened in the past or what will happen in the future. All he wants is for me to be with him today and not worry or stress. I too need that billboard!!

Jessica said...

I could use that billboard too! I was thinking the same thing yesterday, Matthew doesn't think about being any other way than how he is at the present moment. He just wants me to be with him and to love him too. God definitely talks to us through our kids!