light reading

Jake finished his first full week of ABA therapy last week.  It went fantastic, and I am so thankful that we have been blessed with this resource for him.  Recently it has been shown to be the most effective form of therapy for kids with ASD, and I can totally see why.  It is behavior training at it's finest.  He's going to "preschool" three mornings a week, but while he is there he is being worked with one-on-one the entire time with an ABA therapist.  She walks him through the whole day.  Every interaction, every playtime and every school time.  She is teaching him the skills that he needs to navigate the day.  He is taught appropriate behaviors and rewarded generously with praise and tickles.  (She told me that those seems to be his favorite reward... she knows my boy well.)

I'm seeing progress already, albeit in baby steps.  As he progresses in this environment, his therapist will begin coming to our house, teaching him appropriate behaviors and the mastery of skills at home.  She will go with us to the park or the library, wherever he goes.  Helping the world be a friendlier place for him, until he is ready to tackle it on his own.  I think it would be nice if we all had a therapist to walk us through life, no?

As we focus on all the areas to work on with him and set goals for him, I am reminded constantly of all that he can do rather than what he can't do.  He is a brilliant, funny little boy... his mind just works differently than some.  I recently heard ASD referred to as "neuro-diversity".   That made me laugh.  I think we could all fit into that category.

For Christmas, we bought George W. Bush's new book Decision Points for my father-in-law.  Jake came across it and it quickly became his favorite book.  He read it every day.  We wrapped it, and he unwrapped it.  We hid it for fear of it becoming overly-worn before it was gifted... but he found it.  He loved this book.



Obviously he didn't understand every word, and I doubt that he comprehended much of what he was reading, but the fact that he spent so much time reading this book was so funny.    He's four... and I'm pretty sure he's a Republican.

Whatever the reason this book struck his fancy, it was a good reminder of all of the gifts that are inside our little neuro-diverse boy.  He is a treasure to us, as are all of our children.  And he adds so much to our family, as do they.  What a blessing.

a marathon

Well, our first week of Jake's new therapies went way better than I could have imagined.  He loves his new preschool.  When I picked him up, both days he met me with a smile.  He isn't able to really tell me exactly what he did there, but I could tell by his face that he had fun.  He did tell me that he "loves" preschool and thanked me several times for taking him there.

His new speech/language therapy went just as well.  He really enjoys his teacher and is in a therapy group with only one other little boy. All of his teachers (speech and preschool) are young and fun and so eager to work with him.  I can't say enough what a blessing all of this is.

Next week (hopefully) all of the paperwork will be to place so he can start his ABA therapy.  Thankfully, as I mentioned earlier, his therapist is also his preschool teacher, so I'm hopeful that the transition will be easier for him.

After such a banner week with Jake, sometimes I can forget just how far we have to go with him.  At home or in an environment (like this preschool) that is catering to his needs, he can really seem like such a typical child. (I'm learning that "typical" is the PC way to say "normal" in the ASD community....it does sound better, doesn't it?)  

Anyway, as was the case this week, I can tend for forget(?) or just be lulled into thinking that things are better than they are, maybe?  Then, we go on an outing.... to get a haircut or take a sibling to the doctor or to the grocery store.  Wham.  It's like a punch to the stomach, as I realize we have much further to go in this journey than I wanted to believe.

I'm learning how to deal with his behaviors in public.  Honestly, I have no idea how to do that.  And what's more, is I'm trying to figure out how to deal with my other kids who are (justifiably) embarrassed by how their brother is behaving.  I would love to tell them not to be embarrassed or tell them not to worry about what others think.  But, quite frankly, I'm having trouble telling myself that sometimes.  How bad is that? 

In the day to day right now, we're beginning a gluten-free, casein-free diet. I can't tell you how overwhelming that feels.  I look at recipes and I've never even  heard of half of the ingredients.... much less used them.  Xanthum gum, anyone?  Making all of our own bread and eliminating everything with wheat or milk ingredients: pretzels, yogurt, cheese, milk, cereal, goldfish, crackers, sandwiches, pizza, tacos.... basically everything he likes?  Needless to say, it's a huge change for the whole family.

I know I can learn to cook this way, but boy, the learning curve is steeeeep. Thankfully, I have some great friends who are ahead of me on this journey... encouraging me and sending me recipes every step of the way. Even in the limiting dabbling that we've done in this diet so far, we seem to be seeing some positive changes.  So, I'm in.  If there is a chance that a diet change could help this little guy, we'll eat cardboard if we need to.  (And from the taste of some of this stuff....that just may be one of the ingredients.)

So, it's one step forward, two steps back.  But some weeks, it's two steps forward and only one back.  I'm seeing that this is definitely a marathon and not a sprint.  And I'm thankful for all the encouraging emails and comments from so many people that are helping us along the way....you're like the guys handing out Gatorade at the 2 mile mark.  There is still a long way to go, but God is still providing and I know He always will.

provision

An hour ago I left Jacob at preschool for the first time ever.  He was a little hesitant, but handled it beautifully.  I think I'm more upset by the whole evolution than he is.  I know this is good for him, but still. He's my baby boy.... by my side every morning for the last 4 1/2 years, so this is a big change for both of us.

This preschool is just one of the many ways God has provided for us lately.  After Jacob's diagnosis, it was recommend  to us that he would benefit from preschool.  Along with the therapies that he is/will be receiving, being around kids his age in a social environment will help him learn the social skills/behaviors that he needs.  While I agree with that, actually finding a preschool presented itself as a whole different challenge.

While he needs to by around "typical" children, he is not "typical", therefore requires a bit of extra time, attention and re-directing.  Understandably, this is more than the average preschool teacher is able to do, while managing an entire class of 4 years olds.    We looked at a couple of different preschools but all the ones we considered were either unwilling to take on the added responsibility of an ASD kid, or willing to take him on as long as he wasn't too different.... didn't require too much time and attention.

** Let me insert here that I don't at all blame these preschools for this.  They are not equipped for special needs kids and asking them to take this on would be unfair to them and to Jacob.

Well, God provided.  As He always has.  Through a variety of providential meetings and conversations, we came upon a preschool that is run by 2 ABA therapists out of their home.  It is a class of 5 children with 2 full time teachers, both of whom are trained in working with kids with autism.  The preschool is specifically set up to teach typical children and kids with ASD together, purposefully engaging them with one another so that the ASD kids can learn from the typical children.  Really.  How perfect is that? I'd never even heard of such a thing.

It gets better.  Our insurance approved Jacob to receive all his ABA therapy from his preschool teacher!  So, 2 days a week he will be at "preschool"....learning from other children and being taught by 2 ABA certified teachers.  And 3 days a week, a friendly, familiar face will be is therapist.

All of this is taking place less than 10 minutes from our house, with hours that fit perfectly with the girls school times.  Can you tell that I am more than a little bit thankful for all of this?  

I so love this little boy and am so proud of him.  I can't believe he's old enough for preschool  And.....as I type this, I am watching my littlest boy play quietly next to me with Legos.  So, now I'm off to get some much needed one on one time with this little guy.  A morning with only one child at home?  What to do?  The possibilities are endless.  :)

a bump in the road

Where to begin?  As is usually the case, when I am absent from blogging for a time it is usually because things are going on in our house.  This week there was the usual busyness.... and then there was the exceptionally hard.

I've struggled with how much to share here with issues concerning my children.  I want to respect them and their privacy and I hope I always do that.  But this is also the place where I process and share with a few close friends the daily ins and outs of what is our life.  I find encouragement here and hopefully can at times be the encourager as we see together that none of us are alone in our struggles.

As I've alluded to before, we have had concerns for a while that Jacob was dealing with some developmental delays.  First with speech, then over time we've noticed other things that have caused us to be concerned.  Initially, my pediatrician dismissed our concerns, but over time and different paths (and a different doctor) we were finally able to see a neuro-developmental pediatrician and address some of the issues.

This Tuesday we went in for his official evaluation with a multidisciplinary team of doctors.  The appointment took all of 5 hours, full of questions and observation and them trying to engage Jacob.  After the evaluation, the doctors met and came back to us an hour later with a diagnosis and a plan.

The diagnosis they gave him is Autism Spectrum Disorder, specifically PDD-NOS.  He was clearly on the autism spectrum in several areas they evaluated.  During the evaluation it was obvious and painful to watch him struggle with what they were asking of him.  We left with a plan for years of language therapy, occupational therapy, ABA (behavioral) therapy, a ton of reading material and even more questions.

First, I will say that I am thankful many things in this situation.  God has provided for us in so many ways.  We've already connected with resources here and with people who have children with ASD.  We see that God is already meeting our every need.  Through Ken's job, most of Jacob's therapy will be covered by insurance which is an enormous blessing because that isn't usually the case.  God has gone before us and provided for us, as He always has.

That being said, the whole thing just pretty much stinks.  As much as we knew that something was wrong, we really just wanted to believe that this was just a bump in the road, that he was just a little behind and he would catch up.  The older he gets, the more obvious it gets that that is not the case.  As I watch him now, now that we know, I can see it all so clearly.  Alot of his symptoms have gotten worse rather than better, and I really can't even describe what it feels like to see that.

As we are reading and learning, I am fighting discouragement.  We are dealing with, as the doctor put it, a "lifelong diagnosis."  There is treatment, but no cure.  I am afraid of what the future holds for him.  I am also afraid for Nathan because, due to the genetic factor, his odds of having a similar diagnosis are now 10 times higher.  I really want to pound my fists and scream that this is NOT what I want for my children.  

But.  This is where we are.  I am holding on to the fact that God created Jacob.  He made him exactly the way he is for His purpose.  He intends this for good in Jacob's life and He will never leave him for forsake Him.  He will also walk with us through this... as we pray and decide and seek and ask... He is with us.

I have so, so many questions but am resting in the knowledge that I don't have to have all the answers, because I am trusting in the One who does.  As I have watched Jacob the past couple of days, it has been harder than ever because I "see" the disorder.  Everything he does, I see as an autistic behavior.  It is and it was before, but I didn't realize it before and now I do.  I'm really praying right now for God to just allow me to see Jacob again as He sees him... not for what he can or can't do, but for the beautiful creation that he is.

He is so much for than any one phrase can describe.  He is fun and loving and affectionate.  He makes us laugh, tells jokes and loves to read.  He is gentle and kind, a wonderful son and a great brother.  I am so thankful for this little guy.  Exactly the way he is.  As hard as this is, I wouldn't change him for the world.  I love his heart.  What I would change is the struggle that he is facing.  No mother wants to see their child hurt.  I don't want him to be sad or discouraged or scared.  The thought of someone making fun of him makes me furious.

But.  I know that God is with him through this.  He is his protector and provider and He will make a way for him.  We are praying for healing for Jacob.  As we are doing this and pursuing treatment for him, it will effect our whole family.  So, we are praying for our other kids as well, who need us just as much as Jake does.  

I am overwhelmed.  The time and resources this journey will take.... spiritually, emotionally, mentally, financially... only God can provide these things.  But He is God and I am not, so we trust.  He is the same God as He was last week.  And He will be the same next week.  We are trusting Him to carry us all and we are giving thanks for all the good things He has given us, even in the midst of this.  It sounds trite to say that it could be so much worse, but really it could.  He has given us so much... and in the big picture, this really is just a bump in the road.

Today on my friend Jen's blog, I read this timely excerpt from "Streams in the Desert".  Just one more way that we are being encouraged:

"Perfect through suffering." (Hebrews 2:10)

Steel is iron plus fire. Soil is rock, plus heat, or glacier crushing. Linen is flax plus the bath that cleans, the comb that separates, and the flail that pounds, and the shuttle that weaves. Human character must have a plus attached to it. The world does not forget great characters. But great characters are not made of luxuries, they are made by suffering. 

I heard a mother who brought into her home as a companion to her own son, a crippled boy who was also a hunchback. She had warned her boy to be very careful in his relations to him, and not to touch the sensitive part of his life but go right on playing with him as if he were an ordinary boy. She listened to her son as they were playing; and after a few minutes he said to his companion: "Do you know what you have got on your back?" The little hunchback was embarrassed , and he hesitated a moment. The boy said: "It is the box in which your wings are; and some day God is going to cut it open, and then you will fly away and be an angel." 

Some day, God is going to reveal the fact to every Christian, that the very principles they now rebel against, have been the instruments which He used in perfecting their characters and moulding them into perfection, polished stones for His great building yonder.- Cortland Myers. 

vaccines

This week, I took Nathan to get his MMR shot.  If you're shot savvy, then you know that this is usually one that is given around 12 months.  If you know that Nathan is now 20 months old, then you also realize that we are behind schedule.  We have chosen to spread out some of Nate's vaccine's to avoid getting multiple live virus vaccines at once.  This choice has made things much trickier than I had expected.  I really didn't realize that making such choices was so unusual or would be met with such resistance.

The reason behind delaying some of Nathan's vaccines is due to the possible correlation of vaccines to Autism Spectrum Disorders (ASD).  Please note that I said possible.  I know that this has not been proven (and have been reminded of this fact by more than one health care professional as of late). However, I think there are enough studies out there to indicate that there is at least the possibility that these two are related.  

I have read about all this in depth, I have friends who have dealt with these issues personally, and unfortunately we are dealing with some of these issues ourselves.  I won't go into what all factors would/could line up to make multiple vaccines dangerous for some children, but I really do believe that it's not the best thing for our kids. 

We haven't always felt this way, but over the past 2 years we have come to realize that one of our children does have some developmental delays that are symptomatic of an ASD.   Without going into all that, I will just say that we have what I believe to be justifiable concerns.

Anyway, when I broached this subject with our healthcare facility, we were told that all vaccines were mandatory and have to be given on schedule.  Not alternate schedule.  No flexibility.  If I wanted to do something different, I would have to go through the Public Health Dept.  If I brought him into our normal facility, he would be given ALL of the shots he needed, no matter how many that may be. 

 (By the way, the typical 12 month old is given around 9 vaccinations at once.  Nine.  In the form of 3-4 shots.  And here's a fun fact: 3 of these are live viruses... if you get a live virus vaccine alone, you have to wait 4 weeks before you can get another one.  Unless you get them all at once.... then I suppose you can get as many as you want??  Does that make sense?)

Anyway, we have jumped through the hoops.  I have waited for 2 1/2 hours in the waiting room of a local health department, just so I could be treated like nothing short of a child abuser by the nurse who accused me of neglect for not "fully" vaccinating my child.  I didn't even bother explaining again that I will be vaccinating my child, only not all at once.  Besides, she was so busy judging me, I don't think she would have heard me anyway.

Well, by hook or by crook, Nathan is vaccinated now, and we did it in the way we thought was best for him.  But I had to jump through flaming hoops to get there.  Did it make a difference?  No idea.  Will this prevent some type of damage to his brain or his immune system?  Maybe, maybe not.  The point is that I don't know.  And as long as I don't know (and no one else does either), we're going to do what we think is the safest for our children.

What has bothered me most about the whole situation is being treated like a criminal because *obviously* the government knows what's best for my children.  And *obviously* I don't.  I haven't enjoyed this small peek into "the good of the masses" superseding the rights of the individuals.  I am a parent who is trying to do what is best for my child, and I would like to be free to do that.  

Socialized medicine, anyone?  No thank you.