Finding a Place
I frequently use some phrases. Some are more colorful than others. One of the phrases lately comes from a song. The phrase is: my place in this world.
You see having a child with a disability changes your thinking. You understand with certainty that you and this child may not share the same goals. Things parents dream of for their children may not be possible. Sometimes these dreams just aren’t the same and really don’t become the child’s own desires.
Two years ago, some teachers asked me about a short term goal for Tiger. I said that I want to play catch with him. The ugly truth is he wasn’t interested in playing catch.
So now I look at things differently. I try to consider his desires more. What matters to me is helping him find his place in this world. I realize that I don’t control what that place will be. The big challenge is finding the desires of his heart.
If I can only figure out what he truly desires then I can help him achieve his own goals. Thoreau was so right; most men do lead lives of quiet desperation. Those who live deliberately seem to have clearly defined desires. They strive after the longing of their hearts. Those who do not strive for their wants still want. It is all about simplicity.
I want my children to do more than long for their goals. I want them to achieve their goals. This will never happen if I obsess on projecting my own agenda on their lives.
My children are far too independent to be molded. I can’t force them to be what I want them to be. Perhaps I should start leading them instead. Tiger’s autism only accentuates the truth. God makes children. Parents just raise them.
My deepest desire is that all of my children discover what they are chosen to be. They all have a place in this world. Maybe I can help them find their place. Or, maybe they can find it without any help.
posted by bigwhitehat at 10:19 PM
8 Comments:
Hi there,
I have several friends with autistic children and with a casein free/gluten free diet and prayer, these kids' lives have improved dramatically. Have you checked out this website?http://www.childrenofdestiny.org
I will pray for you and your family. This post really touched me.
Thanks for visiting Tiger's blog! (I'm Tiger's mom, and BigWhiteHat's wife)We appreciate your advice!
BWH and wife!
Wow, i really need you all to pray. Through a series of events lately i am burdened to do a post on my blog about my son Isaac. He has autism and is 5 years old. He was what our ABA therapists called a 'success' story. If we were able to continue 25 hours a week intense therapy, he could 'recover' by kindergarten age.
well, he is 5 and has not recovered. He is becoming very aware of his surroundings and is able to talk. sometimes in context, sometimes totally out of context and clumsy when talking with strangers.
People look at him funny when he tries to converse. He is so courageous. He really tries hard, he just can't have a back and forth conversation. It is his receptive instruction disability. He is more severly disabled in that area, however his expressive language is better, but not 'typical'.
I have had people say.."wow i didn't know he had autism" when he was 3 because he was so quiet, and he would stem with his eyes, and via touching people.
Now, people don't say that anymore after they try to converse with him.
Isaac is one of the most courageous people I know. I want to post about him, so feel free to read it if you have time!
You two are very positive, and right now i am struggling as i am very positive about him normally. But we have been going through the rollercoaster and are on the downside this past week.
He was taken off the floor at Tai Kwon do last night for stemming because it distracted the other kids. I totally understand it too. However, i don't think a child should be 'punished' for stemming. BUT, i don't hold it against his teacher because he isn't an autism specialist. SO, i hold it against myself for even enrolling him. But, i don't want to go there because my son CAN be included with typical kids. I am not angry at the karate place.
My eldest son, Elijah is 6 with aspergers and Tai Kwon do seems to be his sport. He loves the rules and is one of the best in the class.. Which leaves isaac as the worse one.
Do you see my dilema? Isaac thinks he does great at it.. HE doesn't understand he can't stem, because of his receptive disability, he can't understand his teacher.. When his teacher told him why he was taken off the floor, isaac said, "Don't send me to the basement!".. My husband was there and said.."Isaac, that has nothing to do with this". (We never send him to the basement as a form of discipline, so this didn't make sense at all to us).
I think he was trying to communicate he didn't think what was being done was right,but couldn't figure out the words, so anything came out. He does that a lot when trying to express himself.
Can you image if you were in his shoes, or Tigers for that matter? I try to put myself in his shoes, and man how scary. To not understand what is going on around you, human language, emotions, how to even respond to others, not fitting in just simply relating to people. How lonely and horrible to be caught in a box like that.
I don't stay there very long or I will get depressed because as a mom, i want to save him and pull him out of that box. I can't fix his brain. I can help him, love him, hug him, hold him and let him know I will be there for him.
Isaac is an 'over-hugger' which i love, but other people don't like it. he has multi-sensory issues but you would never know unless you lived with him. Touch, sight, balance etc..
I usually don't go into all this thinking every day, but lately the way things have gone i am once again revisiting it. mayby to try to re-adjust my thinking and expectations. Sometimes you forget your child even has a disability, so you expect him to be like his siblings. Then you get frustrated when he doesn't 'get' something you find easy for him..
Sorry, i could go on!
Gotta go so i can homeschool my 6 year old! we will see how it goes today!
Thanks again!!
Rebecca, you are so definitely in my prayers.
I can't believe some told you he would recover from Autism. That might be part of your despair right now. I felt that way too. I thought Tiger would be talking by now, but he isn't.
You're right, a child shouldn't be punished for stimming. And don't be hard on yourself for putting him in that situation. I believe its good to try out new things and see whether or not he child can handle it. Sounds like maybe he can't and thats why he was stimming.
You asked if I could imagine being in their shoes. I have tried. I want to know so badly so that I can help. The only thing thats helped me is reading things from adults with Autism. A good site is oddisms, and neurodiversity.com.
Your child is special and unique. So are you, and God chose you specifically. He knows you can and will be the best Mom for your children. Pray often and know that others are praying for you and yours as well.
Rebecca, you say we are optimist. You’re right. That doesn’t come easy. If it did positive thinking wouldn’t be a multi billion dollar cottage industry. You don’t need a book. You don’t need a seminar. You do need a hymn.
“When you upon life’s billows you are tempest tossed
When you are discouraged thinking all is lost
Count your many blessings name them one by one
And it will surprise you, what the Lord has done”
Optimism isn’t Pollyanna. Optimism is the attitude of basing your outlook for the future on past successes. Instead of being overwhelmed by today’s troubles, you should reflect on Isaac’s fantastic progress. Yes he is not like his brother. He may not be able to sit in a Tae Kwon Do class. He doesn’t have to learn Tae Kwon Do to live a full and satisfying life (I’m a Black Belt and I’m still saying this). That is OK. He is still a fantastic Child. Just look at how far he has come.
It is true that his school did not deliver what you had hoped. But, look how far they took him anyway.
I want you to understand the magnificence of your life and Isaac’s life. But that is difficult to do when you are in the dumps. For now please understand that God’s grace is sufficient for you. If God did not think you were fantastic he wouldn’t have given you an aspie and an autie to raise. God knows you can love them for who they are. Take courage! All of you have a place in this world! And most of the time it is a happy place.
Finally. You should talk to the Sinsei. You may be able to work something out. Your son needs more time than most children to do something like this. Or it may be that this teacher can’t handle this child. I would still have a couple of discussions with enough time between them for the instructor to think this over.
Stimming takes some getting used to. If I were in this instructors place, I would ask you to bring Isaac for short stints. Each time would be a little longer than the one before. Eventually I would try to get him the class with the other children. I would consider Isaac a good challenge not a permanent distraction.
In NO WAY did anyone offend me with your responses! seriously. I just needed to vent some. YOU ARE SO RIGHT ABOUT EVERYTHING.. I MEAN EVERYTHING!!
I am by nature an optimist, and at times i get to thinking my cup is 1/2 empty. So, i ENCOURAGE others to set me straight.
I need it.
My husband does an EXCELLENT job of setting me straight as well.
I think I am willing to admit my thinking is wrong simply because of Jesus in my life now. I know who i am in Christ, and know how sickening my flesh can be. My last post was my flesh speaking, and i was whining. Which is o.k.for a day mayby, but one can't stay there and put the shackles that Jesus removed back on..
You spoke the truth in love, and Isaac is special, and unique just like everyone else. God will use him to glorify himself just as he is. God wired him that way, and I know God will use him.
I tend to disagree with ABA about stemming. I too think it is their way of handling something they aren't built to handle like the rest of us. They need to do that to feel like they have some control. To not allow them to do that is like duct taping your hands to your side when your nose itches.
We do need to be reminded of the truth often with one another. To build one another up is so important.
thanks for the encouragement!
I am so sorry!! I didn't hit reply all when you sent me that e-mail. I don't even have reply all on my e-mail. hope you didn't get in trouble!!
You two are doing a wonderful job. Always feel proud about that. It comes across so strongly...your children are quite lucky to have you as parents.
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