Personal Daily Hygiene
Topic: Aspergers Syndrome

Personal hygiene is an aspect of daily life that comes natural to most people. Throw in a few sensory issues, though, and it becomes a daily struggle between parents and children with Asperger Syndrome.

We have always had to work with our Aspie on hygiene issues. His sensory issues led to different ways normal things like water, soap, and toothbrushes affected him. When he was very young, he had problems feeling water become hot so that was a safety issue even more than a hygiene issue. We purposefully did not allow him to take showers and we always prepared his bath for him. He still likes extra hot showers but he has grown and adapted in such a way that he now comprehends that water which is too hot can hurt you.

Another issue we dealt with on a daily basis was brushing teeth. Our sons teeth came in late -- he didn't get his first tooth until almost a year old, they were widely spaced apart, and they were tiny. He did not like the feel of a toothbrush in his mouth at all. We were able to get around this buy using very soft toothbrushes, and eventually with buying an electric toothbrush. It turned out the vibrations were comforting to him and his sensitive mouth was less bothered by this type of brush. We did not start flossing until the past few years and we only use the small floss pics. They seem to work best for him.

However, good personal hygiene isn't just getting wet in a bath and brushing your teeth. Soap, deodorant, and a comb are also good essentials for helping with your daily appearance, and smell.

We knew that we would not always be around to check our son immediately after he came out of the bathroom every morning and evening. We needed to teach him how to use a checklist. When he was very young, it was very simple and we laminated it so that it would last longer. Now that he is older, and he could care less about a cutesy picture chart, we simply have a checklist that he can run down.

Did you take a shower using soap and wash your hair with shampoo?

Did you put on a clean clothes, especially clean underwear and socks?

Did you put on deodorant?

Did you comb your hair?

Did you brush your teeth?

Did you floss?

Did you clean up the bathroom before you walked out of it?

Eventually he needs to be able to go over the list in his head, rather than marking off tics in a box. I truly believe our son is as high functioning as he is because we make him learn these things so that they come naturally to him (ie checking off boxes in his head rather than on a list taped to the mirror) just like we teach our other children. Children with Aspergers grow up to be adults. They will still have Asperger Syndrome (AS) but that doesn't mean they can't learn to adapt. Teaching basic life skills takes time but it is do-able.

We received the diagnosis of AS in December of 2002. We knew something was different way before then. We've had a decade and a half of trial and error in our parenting processes to learn what works with our special needs children. We feel truly blessed by God and know that He trusted us so that we could share with others what has worked for us. Having a child diagnosed with autism is NOT a death sentence. It's a blessing that only God could give!!

Do you have a child diagnosed with Asperger Syndrome or another Autism Spectrum Disorder? What questions do you have for a seasoned mom? Feel free to post those questions here, or email me at salmander_son@yahoo.com

 

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Sallie

Military kids with autism need your help!!
Topic: Aspergers Syndrome

I received the following email tonight from our autism support group advocate on base.

As a parent who has had a VERY difficult time getting services for my son, so much so that I gave up on trying to get them, please understand that we need your help! Our spouses would give their lives for you. Would you give a phone call for our children?

Thank you!!

Sallie

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Dear Friends, Family, and Fellow Autism Advocates,

Today the Senate Defense Bill will likely wrap up and go to the floor for a vote.  Unfortunately, the autism amendment to recognize the medical necessity of effective autism treatments and provide appropriate coverage of treatment services under the TRICARE basic program was rejected by the Senate Armed Services Committee.  Military families impacted by autism need your immediate help and action today.

1.  Please contact Senator Levin and Senator McCain and ask they allow the Gillibrand autism amendment, amendment #1786, be voted on.  Phone numbers below.

Senator Levin 202-224-6221

Senator McCain 202-224-2235

Not sure what to say?  Below is a sample statement for your consideration:

“I appreciate the service and sacrifice our military families have given this country.  Military families with autism face extraordinary challenges and need the Senator’s help.  I ask the Senator allow the Gillibrand autism amendment to the NDAA, amendment #1786, be voted on.”

2.  Call your Senator and ask they support and sign on to the Gillibrand autism amendment to the NDAA, amendment #1786.  

Not sure who your Senator is or how to contact them?  Simply click on the below link.

http://www.autismvotes.org/c.frKNI3PCImE/b.3932687/siteapps/advocacy/search.aspx

3. Please forward this E-mail to your friends and family and ask for their support and immediate action.

Attached is a copy (please let me know if you have problems opening the pdf file) of the Gillibrand autism amendment (amendment #1786) for your review.  This important legislation will provide access to the much needed medical services and treatments military children with autism require.  Our military families shoulder significant responsibilities today.  We have a moral obligation to provide our military families with the medical care they require.  I ask for your help.

On behalf of the thousands of military families impacted by Autism, I thank you for your action in support of our special children.

Semper Fi!!

 

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Sallie

God's All Sufficient Grace
Topic: Aspergers Syndrome

Last week was Vacation Bible School at our church. There were not any classes for Caleb's age (youth) and so he didn't attend most days. He played with the dogs at home and enjoyed the quiet time alone. The last day, however, he wanted to "help" out in the younger boys class so I said that would be okay, IF the teacher agreed. Everything went sailing along smoothly until Caleb decided it would be cool to hear the click clack of his 3-D glasses in the fan. He assumed it would be just like a card in the spokes of his bicycle tire. Unfortunately, the powerful motor of the fan grabbed the glasses and ripped them into three pieces! NOT COOL! Especially NOT COOL to a kid with Asperger's Syndrome! Our new church family was pleasured with experiencing a full-force melt down. Oh, what will they think of us now, I wondered? Thankfully, though, this church has had several autistic children in their midst and they have an understanding spirit.

I knew I had to get to the bottom of the matter. Why was he having a meltdown? What triggered it? He hasn't had one in a while and glasses being torn apart by the fan, when a replacement pair was offered to him, seemed to make the meltdown a bit overboard. I started asking questions only to be met with glares and defiance. This is not an option in our home and our son knows it. At 13 years old, and towering at 6'1'', I can't afford to let this be an option or all respect for my authority will dissipate. Caleb knows this, but it doesn't stop him from occasionally trying to test the boundaries either. Patience is my friend in situations like this and so I sat Caleb in a chair by himself and walked into the kitchen for a few minutes to help prepare some snacks for the younger classes. It gave us both the patience we needed. I needed to think through my questions clearly. He needed to calm down enough to be willing to listen.

After a few moments, I went and asked Caleb to follow me outside so we could sit and talk away from everyone. I knew as long as we were around people that he would not open up to me. After we got outside and started talking, I was completely knocked over by his answer when I asked why he had the meltdown. He was mad at himself for being what he considered dumb. Plain and simple! He was mad that he was too dumb to figure out the fan would eat the glasses and that they wouldn't be able to be repaired. My boy thinks he's dumb?! Huh?! The boy who read Tolkien at 8 years old and understood him? The boy who can memorize line upon line upon line of movie scripts and book passages? The boy who not only learned his books of the Bible forward but backward as well, just to encourage the other boys in his AWANA club? He thinks he's dumb?! My brain cells died and a whole portion of my thought process dove off a cliff as I tried to think of what to say. My boy thinks he's dumb? I honestly could not fathom how to even answer that because it is so far from the truth. I was at a loss for what words of encouragement I could use. Then he said "I just want MY glasses to be fixed and they can't be."

HA! I am mommy... hear me roar! With a bit of tape and some thinking skills (miraculously my thought processes got back in gear), I could get those glasses fixed and show him that everything doesn't have to always end bad just cause it seems that we have ruined it. Back in the kitchen we got out the tools I would need: broken glasses - check, tape - check, scissors - check. I set to putting the 3-D glasses back to as close to new as possible only to have Caleb amazed that they were able to really be fixed. He looked at me and said he was glad that God gave him a mom like me. I looked up at the now sweet face looking down at me with eyes of wonder, and asked "Why wouldn't God give you a mom like me? But, more importantly, why wouldn't God give me a son like you?"

I have thought about those questions several times this weekend. When I was a baby Christian and things happened I would often question God and his love for me. Now that I am more mature in my faith, I understand how the puzzle pieces of life fit together for the honor of God. We don't let Caleb give in to his "disability" but he does have one. He does have special needs that need attention. Why wouldn't God give him a mom who was patient and a fixer of things big and small? Besides, what on earth makes me so special that I deserve to have all perfect children with no challenges in raising them? Don't we all have challenges in some form or another?! Better yet, what makes me so special that God chose to entrust me with one of His special children? That is the question I think about the most!

There isn't any deep, thought-out wisdom that provides answers to these questions. Honestly, they are quite simple. My Father in heaven has equipped me with everything I need to take care of my child. He has also equipped my child with everything he needs to succeed.

Philippians 4:13 says "I can do all things through Him who strengthens me."

Another verse that gives me strength daily is 2 Corinthians 12:9"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'"

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Sallie

Faith Through The Bad Days
Topic: Aspergers Syndrome

Some days are just bad days. Having bad days isn't exclusive to having special needs children but when you have a bad day AND you have a special needs child, then it... the badness... seems to be amplified to the degree that the very existence of the know universe, even the unknown for that matter, will be determined by the outcome of whatever happens THAT day. These are the days that make you long to go lie down in your bed, cover your head with the blankets as tightly as you can, and have a good, soul-cleansing cry.

I've had those days. Sometimes, I think perhaps I've allowed myself too many of those days. Other times, I wish I could have just one more. Thankfully, I am too strong willed to allow myself to succumb to those desires. I do a mental shake of the shoulders. Occasionally, when the mental shakes aren't strong enough, I am forced to take it a step further. On those days, I give my shoulders a good shrug, jerk my head a few times back and forth ala Rocky Balboa style, set a determined look to my face, and, with an 'I will NOT crawl into my bed!' or an 'I will not let the despair win!' conversation with myself, I put one foot in front of the other to make the day work. It may not be our best day, but it is a finished day none the less!

My faith in God carries me beyond understanding on these days. Key scripture verses such as Philippians 4:13 (I can do everything through Him who gives me strength.), Psalm 55:16-18a (I call to God, and the Lord saves me. Evening, morning and noon I cry out in distress, and He hears my voice. He ransoms me unharmed from the battle waged against me.), and John 16:33 (These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.) play repetitively like a scratched CD in my mind.

Many times the bad days stem from frustration and lack of patience with my child. The easy path to take, on days like this, might be to rail at God and curse Him. I could play the blame game and scream at God for giving me a child who does not remember a list of things to do two seconds after I have given him tasks to complete. I could play the woe-is-me game and ask what did I ever do to deserve a child who for the life of me can not remember 7 times 7 is 49. And, really, WHY must he throw a tantrum in the restaurant when they bring out something that resembles fried chicken instead of steak? I mean, he DID order country fried steak so what is his problem anyway?!

Would it do me any good to rail at God for answers to these questions? Would it do my child any good? Is my special needs child the real reason I am having a bad day or am I just taking advantage of a likely candidate? Even if the answer to the first part of that question is yes, does he deserve MY bad attitude making his day any worse than it already is? Perhaps that is the most important question that I need to answer!

The path of thankfulness and gratitude towards my Savior for every circumstance He has given me is a harder path to take but one worth striving for. Philippians 4:8 tells us "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things." It is a simple task to pick out the bad and run with it. God gives us a harder task though when He tells us to focus on the good and be appreciative of those things. One way I can do this is to take a mental time out for myself to dissect the verse above and concentrate on those specific traits within my son. For instance, I might say:

Whatever is true: my son has a disability, but the disability does not have him.

Whatever is noble: a few terms the dictionary uses to define noble are excellent, magnificent, stately, notable; My son is very good at including everyone in playtime. He always takes the time to notice the child who is feeling left out and brings them into the playgroup. Many mothers have shared with me how they have appreciated and admired this noble quality within my son.

Whatever is right: my son loves to read and share stories with his brothers; Many children on the autism spectrum have problems with comprehension but not my son. He is great at helping others understand the plots in a storyline. You will almost always find the right answer when you ask him a question about books!

Whatever is pure: my son loves God with all his heart; He is compassionate and understanding when sharing Christ with others. He knows that God has given him his own special challenges for a greater purpose in his life. He is ready for God to use him however He sees fit.

Whatever is lovely: my son is always quick to let me know things are going to be all right; He used to twirl my hair when he was a little boy to calm himself down. It was "stimming" in a way I guess but it never bothered me that he liked to have his hands in my hair. Now, when he sees that I am having a bad day, he will give me a hug, and ask to brush my hair. I guess playing with my hair has been something that has always calmed both of us and he knows that better than me sometimes.

Whatever is admirable: my son has learned the hard way to practice self control; It had taken a LONG time, and it has been a LONG road, but my son now practices self control better than most adults I know. I admire his ability to quickly read a situation and decide to walk away from events that might otherwise turn out ugly. Though sometimes he might still struggle, for the most part he has learned to be wise and discerning in this area.

These, and more, are all excellent and praiseworthy things that I can think on and appreciate. My child is a special gift that God has given to our family. I know there will be days with trials on occasion but the good will always outnumber the bad. I know we will always have challenges but they are not insurmountable ones. Most importantly, I know that my microscope view of things is not the same telescope view that God has. I will remember God's promises in His Word and 'I will say of the Lord, "He is my refuge and my fortress, my God, in whom I trust."'

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Sallie

Order and Structure
Topic: Aspergers Syndrome
Children who have disabilities or learning challenges typically need structure and organization. I was reminded of that on Christmas morning last year while looking at the mess once called our living room. Yet, there in one small corner was an organized structure of unwrapped items. The wrapping paper had been neatly scrunched into a ball and Caleb had lined up all of his gifts. Even the spoils of his stocking were organized. The tootsie rolls were stacked next to the smarties which were lined neatly in a row. The jumbo candy cane log lay down the side and everything else was neatly in tow. There was no question about it: this was Caleb's area!

I should mention that Caleb takes after his dad in this area of neatness. I once walked into Mike's office at work and he had warned me about the "mess" at his desk. The office had recently been restructured and so I walked in and sat down at the messiest desk. Boy was I surprised when a Marine other than my husband came over and said "Can I help you ma'am?" I told him I was just waiting for my husband and he confusedly pointed to another desk and said "Uh, that ONE is Gunny's desk!" This desk was as perfectly arranged as if it was in an office furniture showroom display. Everything down to the stapler and tape dispenser were arranged perfectly and in order. No, Caleb did NOT get that from me!

I hate organization. I am one of those people who knows where everything is in my chaos and if you move it to straighten it up then I am L.O.S.T.. Really, I would lose my head if it wasn't screwed on! So, how do I manage to keep things organized and straight when I am obviously not wired that way and my autistic child would die without said organization?! Well, the God's honest truth is that most days I don't. I tell myself as I look around at "my style of organized chaos" that I'm teaching Caleb a good thing because we live in an imperfect chaotic world. That doesn't mean I let everything go to pot but God has shown me that sometimes autistics can be trained by learning to cope with what we neurotypical people (NT) call everyday life. We all work at it as a family and somehow the end result works.

Compromise is where we all exist in a happy medium. There are important battles which Caleb needs to win -- ones we all need him to win. One of those would be having his clothes neatly arranged in his drawers and closet in a manner that he likes. If I don't help him do that then I run the chance of smelling the results of it two weeks later when he finally asks if he could PLEASE have a new pair of socks because there aren't any in his dresser. Where the other children would just go to the "yet to be matched" jumble of socks in the laundry basket, this thought never passes into Caleb's mind. He knows he has to wear socks. Therefore, if he looks in the drawer and there aren't any there, then he just puts on the ones he wore the day before, and the day before, and the day before...Eewwww! We've worked together to train ourselves to put laundry away as soon as possible.

We don't always succeed. For instance, my bed is currently laden with clean clothes that I sorted through this morning for putting away. The weekend roared through our lives like a busy lion and I wasn't able to complete my jobs in a timely manner. The stacks of laundry coming out of the laundry room Saturday evening after everyone went to bed landed on my living room sofa. Yesterday they were quickly stacked in a corner of my bedroom, when on short notice, we had company come for dinner after morning church. We'll pick back up this morning on laundry "perfection" and get all those socks and tees and so forth put neatly away like Caleb (and really me, too) likes.

Another compromise we work on is school. The psychologist fussed at me about my square box thinking about neat writing with an hour of this subject and an hour of that subject. He told me to "get over it already" because that was "normal" school and hadn't I pulled Caleb out of that environment so he wouldn't have to try and fit it anyway?! He told me to stop making Caleb do busy work but to organize and have a list. I listened and this past year spent two VERY FULL days completely organizing a schedule for all four of my children for EVERY DAY for the WHOLE year. No one has any questions about what their work for the day is and everyone is enjoying school now. I still have days like any other home school family where the schedule will get thrown off but again we compromise and we make it work. We pick up where we left off on our list and we keep going. Without this schedule for school, not only would my children falter in their work, but so would I. I may dislike organization but this schedule keeps me accountable and our one day of taking a break doesn't turn into an unplanned two week vacation.

Schooling most likely will always present challenges for our special needs children. When we, as parents, learn what it is that our child needs the most to succeed, and make changes or compromise to accommodate those needs, our children will grown and thrive in ways that awe and inspire us. Ecclesiastes 3:1 reminds us that "There is a time for everything, and a season for every activity under heaven." Homeschooling your child with disabilities is a season of your life and a season of their life. Work with your child to make it the best season for both of you!

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Sallie