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Monday, April 18, 2011

Autism: How Organizing Can Help

So, continuing with our "Monday theme" for April I'm going to tell you how we have used organizing and scheduling to our advantage with having a child with autism.





If there is one thing we have learned in having a child with autism, consistency and organized spaces along with schedule/routine is very important for them!  Here are a few things I have learned in our journey and from various books on autism:





First of all, consistency in discipline and follow through is vital!  Especially in high-functioning children, who are truly able to learn to understand when something is appropriate and not appropriate.  As an example, hitting another child is inappropriate.  Screaming at the top of your lungs is inappropriate.  Finding ways to express their feelings - learning to say specific phrases to another child who is bothering them, etc., is an appropriate way to deal with it.  Even children that are not as verbal can be taught how to deal with it.  Our son did not talk until he was nearly 4 and even then it was just small phrases.  But, we still disciplined him consistently when he did something that he knew was not okay.  This is really true of "typical" children, but is CRUCIAL to children with autism - as it can confuse them if you are inconsistent.



Second, organizing his spaces.  Having a chaotic living environment is difficult for most people.  When you have autism, you don't think the same as everyone else.  Chaos is not calming.  It's not soothing.  It can make you throw tantrums out of frustration.  It can make you feel even more awful than you already do if you have sensory issues. Some children are emphatic about having things set a certain way.  You can help teach them to organize.  It will not be easy and it will not happen fast.  But, help them learn good habits like organizing their things and they will be calmer.


The kids' schedules in our pantry


Third, having a schedule and a routine is also a very important part of helping a child with autism feel calmer and more secure.  I can't handle not knowing what is going to happen all the time.  Set up a daily routine for their morning or evening.  Print up a schedule with pictures for them to go through each step one by one.  My son did this for years -- and both children still refer to their daily morning schedules.  

Teach them how to handle unexpected changes....

Now, life is not always about things happening a certain way.  That's not how life is...so my husband and I, carefully, would changed things up just a bit on Adam, on purpose.  We did subtle things - like moving around his toy he set in a certain place, changing his routine up every once in a while, etc.  At first it was just very subtle things, but now as he's older we are much more spontaneous with him - he handles change well and is a much more flexible young man.  My husband is SO creative when it comes to this stuff.  I've been amazed at the great ideas he's come up with - my techie husband!  I'm supposed to be the creative one...but I'm glad I've listened to him and let him try things.  It has greatly benefited our son.  

Teach them flexibility, as best as you can!

I know that every child with autism is different.  We are Christians and have incorporated God in every aspect of our son's life.  We have taught him that nothing happens that God is not in control over.  We completely trust in God when things don't go the way we expect.  This has brought him {and can to all of us} great comfort when situations come up that are difficult.  It has been so wonderful to see him grasp this understanding that is taught to us in the Bible. {Go here, for more on that}.



He has never asked us about anything to do with his autism.  We have decided to wait until he starts asking.  He has never asked "why do I go to all these therapies and social skills classes?"  Never!  He just obeys.  He is such a sweet, loving boy!  We are prepared when he does.  His younger sister has asked me about why he goes to all those things.  I have told both of them that God has given each of us strengths and weaknesses.  Adam's weakness is in the area of speech or relating to other kids.  Hers is....well, I gave her a good list of things she struggles with. She never asked again!  



His therapists have also suggested that when he does start asking {which could be soon, being that he enters middle school next fall}, not to tell him he "has autism" because that is a label that he truly won't understand at this point.  They have suggested telling him that he just thinks differently than others.  Here is a perfect example you can watch when you have the time.  This is Carly Fleischmann and she describes exactly how it feels to have autism and how she thinks.






I encourage you, if you have a child with autism or suspect you do, to really do your best to keep life as stable and routine for them as possible.  If you are not good at this, I would say that this would be a good time to sit down and work out your schedule for both yourself and for them each day.  Go over it with them and instill that in them each day.  It helps them to feel more secure.  Yes, life happens, as I said above.  But, you can do your best to help prepare them for what lies ahead each day. Please email me if you have any questions or need any encouragement or help!  I have been there...I didn't know a single person who had a child with autism when my son was first diagnosed - it was very isolating as none of my friends could relate, no matter how much they tried {go here for a wonderful post from a friend}.  You just don't understand.  Reach out to your family - having a family {who's niece/nephew, grandson/daughter, cousin} has autism can be a help to you.  Next week I will tell the rest of you how you can help, what you can do to help out a family who has a child with autism. 




One last thing I wanted to show you what has helped me keep organized.  I started these  notebooks when Adam was first diagnosed.  We had to be his advocates!  I was on the phone daily, many times a day! Remember, this was 9+ years ago, so I had a spiral notebook next to my home phone where I would take tons of notes.  Every time I called, I wrote down the person's name, the time, and what I called about - a record of EVERYTHING. This was SO helpful!  I also kept all his evaluations categorized in a notebook by year.  




I also have a HUGE notebook filled with all kinds of things. I have a front page full of business cards.  I have doctor's notes,  autism events, IEP reports, internet information {which wasn't nearly as much as today}, and a whole section of email that friends sent to us - to keep me encouraged.  I will show you more of that next week.



For his IEP and a mediation that we had, I put together a book all about Adam to give to those deciding "his fate."  A mediation is where you have a dispute over what services they are giving versus what you feel should be given and you have to go before a person/board to appeal to them to change their minds - not an easy task!  This contained letters from all those people who helped Adam - there was a LOT - plus his dietary needs and all about who he was and what he likes.

This was all about who Adam was and how he did in school and church.

Adam's diet was CRAZY!!  His holistic doctor did biomedical treatments and dietary treatments with him and took out a LOT of food.  I was pregnant with my daughter and was extremely distraught over what I was going to be able to feed him!



I put together a "guide" for Adam.  He was a hand-full at church and a team of people were put together to trade off each Sunday to "shadow" him from the time he was in the 3 year old room all the way to the kindergarten class. I wrote out all the things that would help calm him down or would help him to keep from hurting other children, things that would cause him to tantrum, etc.  They kept this book in his Sunday School classroom to refer to each Sunday, for whomever was his "shadow" for that morning and for the teacher. 


I encourage you to find other parents who understand you. A friend from my church started a group of us special needs moms that meet once a month {it includes Down's syndrome, physical special needs, deaf, asperberger's, autism and more} - to encourage, pray for each other, give our experiences, and talk about what we're going through. Below is a community of bloggers who have posted this month or are continuing to put this on each post this month, who have children, grandchildren, or friends with children that have autism.  Please visit each blog and let them know that you came over specifically to be an encouragement to them and their children.  Thank you...

I'd love to have  HUGE list of bloggers joining me, so won't you?

Autism websites:

Autism Speaks



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