He brings restoration

On Sunday, there was some miscommunication and we took our boys to church thinking there would be childcare at the "younger folks" service. Well, needless to say, the hallway was dark and quiet at 7:05pm- things did not look good. We metaphorically pulled our pants up and took them into the service. Being only 5 and 3 years of age and used to going to Sunday School, they did much better than we thought. Quiet during the announcements and even through most of the music. Luke, being 3, got bored rather quickly. But Jacob surprised us. He was attentive. He tried to read the words on the screen. He even sang along with one of the songs. It was a song based on Psalm 30:11, "You have turned for me my mourning into dancing; you have put off my sackcloth, and girded me with gladness."
Our autism journey has been messy. It's been painful. It is confusing and overwhelming at times. But all of that makes the joy so much sweeter. To stand by my son, his arm around me, and hear his sweet voice singing about God turning our sadness into joy- that makes it all worth it. Truly it does!
"You take my mourning and turn it into dancing, you take my weeping and turn it into laughing, you take my mourning and turn it into dancing, you take my sadness and turn it into joy. You bring restoration, You bring restoration, You bring restoration to my soul." It is in these moments, that I am firmly convinced that God's plan for us is good, despite it being sometimes hard and painful. God can use it ALL for good.

Mourning...

A few months ago, I went through a period of mourning... again. I came to the conclusion...again, that my child will never be "typical." Typical is a word that parents of autistic children use to refer to normally development kids who process information in the typical manner. I had one of those 'It's not going to get me anywhere' daydreams where I thought about how Jacob would be if he wasn't in the spectrum. This type of thinking is so futile and silly. My child is what he is, and trying to figure out the 'what could have beens' doesn't help our situation one iota. All of this came crashing back to me tonight when I read this quote by a doctor talking to the parent of a newly diagnosed child.

"MOURN THE LOSS OF THE CHILD YOU THOUGHT YOU WOULD HAVE, SO YOU CAN ACCEPT THE CHILD YOU DO HAVE."

I seem to go through these mourning periods over and over. I come to grips with life as we know it and the unforseeable future, tell God that I know He has a greater plan than I can see and move on. But every once in a while, it sneaks up on me. 'It' being the normal child. I can get envious of my friends with unaffected children. "Do they appreciate what they have?" I ask myself. "No," is my resentful response. "They think their child is difficult, but they don't know what difficult is." Their child doesn't get stared at for being different. They think their child's tantrums are hard to handle, but they haven't ever walked on egg shells around their own toddler. Anger, sadness and jealousy surge to the surface in me. The part of me that wants it "easy."

Jacob isn't easy, but God, I love him so much. There is a fierceness in me when it comes to my child and helping him. I can't imagine my life without him in it. I can't imagine our family without his presence, so I continue to mourn the boy that I didn't have and celebrate the boy I was given to love. I keep praying that God shows me how to love him the way he needs to be loved and that I can accept him, challenges and all.

Autism: The Musical

AUTISM: THE MUSICAL counters bleak statistics with 1 womans optimistic pledge to lead a group of autistic children in defying diagnosed expectations by writing, rehearsing and performing their own full-length musical. Following 5 LA children over the course of 6 months, director Tricia Regan captures the struggles and triumphs of their family lives and observes how this musical production gives these performers a comfort zone where they explore their creative sides.



After hearing about this documentary several times, I decided to buy it, and watch as a way of learning more about my son. I expected it to be maudlin and depressing, and at times it was extremely sad. However, watching these children and their parents struggle and succeed was a hopeful experience too.


The thing that most surprised me most was what I learned about my own child from watching these other children on the autistic spectrum. As I observed these kids, I saw my own. Things that I always assumed were "just Jacob" were revealed to me to not be Jacob mannerisms, but autistic mannerisms. It was comforting in a strange way, because it explained quite a lot about him.


In our trips to our specialist, I have been fascinated to see other children who have been diagnosed too. I do my very best not to stare at them, but I see kids who appear like my own, and I am drawn to them and their behaviors. The lunging movements, the strange sounds, the aimlessness of their wandering, their lack of eye contact and often their silliness. There are other children who act this way? Yes, and it is comforting to me that Jacob is not the only one. Isn't that odd? I have learned that my child is different but the same. Watching the musical has helped my look at my child, my marriage and my other son in a new way- one with clearer lenses. I am more patient, and I am more aware.

I am glad that I bought the documentary and I plan to show to my son (for as long as he watches it), my husband and my friends who have been touched by autism.

Individualized Education Program (IEP)

May this article from a special education teacher inspire you to get more involved in your child's education process. Be their advocate! God put them in your family for a reason!

(From Catherine Whitcher, M.Ed, Precision Education)
First, let me remind the Precision Education Community that I was a special education teacher. I have the utmost respect for teachers. They show up everyday to teach children and deal with the political system. I also admit that I violated my student's rights, I BROKE THE LAW!

I never read a student's IEP from front to back. I rarely charted goal progress. I only glanced at modifications that needed to be done. I was told by my administration to "watch out" for a problem parent whose child was assigned to my classroom. Sure enough, the problem parent called and asked for a meeting before school started. The mom drilled me on teaching strategies, charting and reporting. The curriculum had to be explained to her and the aides had to have training. My world was turned upside down.

I discussed the conversation with the administrator. She told me that I had to comply with the Mom's requests because in the IEP it was written to communicate everything she had been asking. What? Wait a minute, if this IEP was written with accountability- what were the other ones written like?

So I spent the weekend reading all my students IEP's and found out that this child's IEP really wasn't written much different than the others. The difference was that this Mom knew what was in her child's IEP and how her child's education should be executed. Armed with this newfound knowledge, I took it upon myself to initiate the same types of meetings with the parents of all my students.

Parents were amazed at how much information I was giving them and how I wanted them to be involved. Goals were not only being met, but exceeded and IEP's needed to be rewritten by December. My administrator walked into the room a few months later and my entire class was sitting at their desks. A reading exercise was on the overhead and the aides were engaged in assuring the lesson was adapted to each level as I directed from the front of the class. It was an unexplainable experience to have my superior stand speechless at the progress that was made simply by me doing my job according to the Individuals with Disabilities Education Act (IDEA).

I ran into the parent who turned my world upside down last summer. I told her this story and she had no idea that she had such an impact on not only her son's education, but also on me as a professional and the other students who passed through my classroom. I went from an average teacher violating student rights, to a proud teacher of successful students all because of a parent who knew her son's rights and had the strength to become a proactive member of her child's education team.
Copyright 2007 Precision Education (May be reprinted with permission) Catherine Whitcher, M.Ed

Chelation study canceled

Autism does not kill children. Chelation has killed children. We must be careful to not allow our desire for our child to be better to adversely affect the rest of their lives. IV chelation is dangerous. There are much safer, and less aggressive, yet effective ways to remove these metals from our children. Be careful.

The National Institute of Mental Health (NIMH) had planned a study on the effects of chelation therapy on children with autism. Chelation therapy purports to pull toxic metals such as mercury from children. While some parents claim to have found chelation therapy helpful in reducing symptoms of autism, the NIMH found that there was no strong medical science to back up the parent claims. The NIMH was also concerned that the drug used for chelation (DMSA) was too risky for use with children. The NIMH therefore cancelled the chelation study.

First 6 weeks

Last week we had our first Kindergarten ARD meeting and this week was our first Parent/Teacher conference about how Jacob is doing in school. The ARD was very successful for us. They are going to do a full Autism evaluation before Christmas. This will give us lots of specific information about how Jacob learns best and what areas he needs help with. It will also give us the "official" diagnosis, even though our neurologist has already diagnosed him. The evaluation will be more specific than "autism spectrum disorder."

Also, they are going to place him in a "Circle of Friends" social skills class twice every 6 weeks and he will get some individual training from the psychologist too. I am ecstatic about these two things. I don't have very many concerns about Jacob's intellect, but social skills training will help fill in some gaps.

The Parent/Teacher meeting went well, with his inclusion teacher present as well. They shared how a lot of the tools they needed to use at the beginning of the year are no longer necessary. The routine has been established and now he only needs an occasional reminder. We will be adding a few more visual reminders for him (and the rest of the class) about interrupting his teacher while she is talking to someone else.

I know that his teacher was nervous about Jacob before school started, but she told me in the meeting that she loved having him in her class. He is always smiling, "beaming" and fits in well in class. They all rotate table seats every 6 weeks, so he has new table buddies and they are one of the quietest tables she has now. THAT is an accomplishment for my "high volume" boy!

First week of school is over!

When I couldn't sleep well the week before school started, that should have been my first clue that I was more anxious than I thought about school starting for Jacob. Last year at this time, Jacob had already been sent to the Director's office at his preschool twice for meltdowns and inappropriate behaviors. I am thrilled to report that each and every day, his teachers told me that he had great days! I can honestly tell you that EVERY time the phone rang last week I was fearful that it was the school calling me and telling me that I needed to come up there and 'deal with' my son. How is that for over-arcing anxiety?
I kept talking to other friends whose children were starting Kindergarten too and they talked about how they weren't sure they liked their child's teacher or that their child was tired at the end of the day and ALL I could think was, "Praise God! My child is fitting into his classroom well enough that grown-ups are praising him for his behavior and his learning skills. Whoo-hoo!" God has definitely given me some perspective in all of this craziness.
Although it is difficult to get much information from Jacob, he appears to be loving school. He never complains about getting ready or that he doesn't want to go. He told me before school began that he "couldn't wait to go to school." Those types of words are rarely heard out of my 5 year olds mouth, so I've gotta believe him. The long educational journey has begun and in my opinion, it has gone great!
I created a book for Jacob of pictures of every teacher and every room that he's come in contact with, to prepare him for school. If anyone wants more information about it or how we prepped for the big K, just ask me!

More news on Autism in the press... and it isn't pretty...

The behaviour of some children (and adults) with autism is not always pretty. Here are some varying opinions on whether or not these children need to be out in the public eye and should institutionalization be an option. Disturbing information all around and I don't like the sounds of it. Our children are human beings created in God's image and not small animals that only need a 5 minute walk. Read the article for yourself at the link below.
http://www.charter.net/news/read.php?id=14873097&ps=1011&cat=&cps=0&lang=en

Sleep issues... Melatonin to the rescue!

Jacob has always had sleep issues. Better at times and worse at others. The past few months have been the latter. When we went to see our specialist, I told him about it. I have read that insufficient sleep lowers children's growth hormones and obviously affects attention. He suggested giving Jacob Melatonin, 1 mg, one half hour before bedtime. I was somewhat skeptical because I myself have tried it in the past and didn't see any effects but I was, quite frankly desperate for the middle of the night wakings to stop. And, for him to fall asleep before 10pm even though he woke up at 7am and didnt take a nap. Since naps went by the wayside at 4 yrs old, we have experienced what could be called a second infancy- by that I mean up in the middle of the night, multiple times and generalized fussiness in our son.

Here is some information below that I found online regarding what melatonin is, its lack of potential for harm, contraindications with medications, amounts to give and how it works. I hope this helps someone else like it does us. The first few nights, we were in literal awe- 30 minutes after taking it crushed in some apple sauce, our son was asleep and stayed asleep. Reminder: If you have any concerns about giving your child medication please check with your physician first. I am not a doctor nor am a specialist. I waited to start melatonin until I ran it past our doctor first to get his opinion.

What it is: Melatonin is a natural hormone, which is produced and secreted by the pineal gland. Melatonin plays an important role in the regulation of many hormones in the body. Among its key roles, melatonin controls the body's circadian rhythm, an internal 24-hour time-keeping system that controls when we fall asleep and when we wake up. The most accepted function of Melatonin is it role in sleep regulation. Melatonin supplements help induce sleep in people with disrupted circadian rhythms. Melatonin is significantly more effective in decreasing the amount of time required to fall asleep, increasing the number of sleeping hours, and boosting daytime alertness.
One of the major complaints that parents have is that their children who take certain medications can't fall asleep at night. Many parents report that their children, who may be only five or six years old, are wide awake until 11 pm or later. Melatonin may be able to help these children. Since it is the primary chemical in the body that helps to induce sleep, children who suffer from insomnia often find that Melatonin restores their normal sleep cycle and helps them to be more awake and alert during the day.

How to Take It: There are currently no federal guidelines as to how to take Melatonin. Sensitivity to Melatonin is an individual thing and doses that are ineffective in one person may be too much for someone else. The best approach for any condition is to begin with very low doses and slowly add more until you get the effect that you are seeking.In children, it is best to start with a dose of about 0.3 mg/day or less. Although current research suggests that even doses as high as 10 mg are perfectly safe, it is best to proceed with caution (our specialist suggested 1mg for our 45 pound son and 3mg for adults). In adults, 3 mg is usually a safe starting dose and you can increase it or decrease it as you see fit.

Adverse Effects: Melatonin is one of the least toxic substances known. In one extensive clinical trial, a high dose of 75 milligrams of melatonin per day was given to 1400 women in the Netherlands for up to four years with no ill effects.The only consistent side effect of high doses has been drowsiness and a slower reaction time.

Possible Drug Interactions:Melatonin may interact or interfere with other drugs. These include:Antidepressant Medications & Antipsychotic Medications. Many of these medications are now being used in treating children with ADHD and Bipolar disorde. If your child is taking any of these things, you should consult with his doctor before giving Melatonin. Often children with ADHD and spectrum disorders have a great deal of difficulty falling asleep. This can be due to the medications that they are taking or just be one component in the spectrum of their problems. When used properly, melatonin may be a safe and effective way to handle sleep problems in children.

Here is a link to an article on autism in adults getting some attention in the media...
http://www.canada.com/vancouversun/news/story.html?id=098b75fe-c1af-428e-aba6-3a75ba916533

Friend or not?

Recently, my heart hurt for my son. Social skills are difficult for him. His preschool class this past year was 90% girls and only 5 boys. One of the other boys Samuel was a good friend to Jake, but the other boys weren't that close with him. They were by no means unkind, they just weren't as friendly. This past week we ran into one of these little boys around town. I encouraged Jacob to go say hi to him. Jacob went up and told the child where he knew him from and asked would he like to play with him. The boy, turned up his nose at Jacob and wouldnt answer him. I dont know if he was shy, didnt remember Jake or didnt want to play with him. All I know is that when I asked him later, Jacob said that he was sad that he couldnt play with his schoolmate.
I know that every child is exposed to this behavior, but I ache to know that it is probably because Jake has problem playing appropriately and being on the same level as other boys his age. He still likes playing with toys that his 3 year old brother likes and sometimes, I have to encourage him to pick more 'mature' toy choices.
I am encouraged by his growth socially over the last few months. He is doing so well, that many people dont even realize that he's delayed.
I keep reminding myself that the point of life is not to be well liked or get along with everyone- the point of life is to know and love your Creator and serve Him with all of the unique talents that He provides you. Jacob has the gift of laughter and charm. He is full of energy and liveliness. He likes everyone and doesnt look down on anyone. What a gift.
Because of his comprehension issues with language, Chris and I struggle with how to help him understand who God is and how they can have a relationship together. I must rest in the fact that God loves him more than I ever could and that He'll take care of that, and I just need to be faithful to him by loving Christ with all of me, and Jacob will see God's love in me. Trust. I trust that God is my friend and he wont turn up His nose at me or my son.

Summertime

We have always had Jacob in individual sports, for obvious reasons. Social skills are difficult for him. But this summer we prayerfully decided to try a team sport- indoor soccer. As any parent will tell you, watching your child struggle is like having your heart ripped out of your chest cavity and having it stomped on by a 300 pound man wearing cleats.

Seriously, it has been hard. Not for him mind you, but for Chris and I. It is hard to see him skipping on the field, not hearing his coach or paying attention to where the ball is on the field; knowing he is in another world somewhere- having a great time, but not here on earth with us. He has made some progress for sure and he is enjoying himself. He loves being around 2 of the kids on his team a lot and likes wearing all the 'gear.'

We want Jacob to grow, but man is it hard to experience. God is showing me the high expectations that I have not only for myself, but also my child. My beautful, imperfect child. I grieve him not being 'normal' or 'typical,' whatever you want to call it, because I know he will struggle. And despite the fact thtat I know that trials develop perseverance and faith, I so hate to see him go through them. Why? God can totally use his disorder for Jake's good, for my good, for Chris' good, for Luke's good, for a stranger's good. I guess I dont like pain, especially my child's. But, God knows that and He shows me grace everyday. So... challenge your child, because they won't grow if they don't try.

What this blog is all about...

My son Jacob is 5 years old and we are almost 2 years into our journey with Autism Spectrum disorders. As of right now, some believe him to have Asperger's syndrome. Some believe PDD-NOS. And there are some who believe it is ADHD. Whatever his diagnosis is right now, we have found help in the Autism community of care.

I believe it is most important to focus on helping my son in the areas that he struggles, and it doesn't matter so much what his label is on paper. What matters is that there are treatments and resources that are benefitting him, and that he is growing stronger emotionally, communicating more effectively and functioning appropriately in the world. Isn't that what every parent wants for their child, whether they have a developmental delay or not?

My prayer is that the information you find here will help you and your child in their journey with autism spectrum disorders. I will share websites, books, resources and treatments that we have personally benefitted from.