More Than A Day At The Beach

I've always dreamed of having fun at the beach with my kids. We live in a coastal town and beach access is easy. It's the 'having fun' part that is tricky. Jake loves sand and water so you would think time at the beach would be a blast. But, he is afraid of the ocean water and I think the sound of the waves crashing scares him. Sarah gets nervous too. Our short visits to the beach usually consist of Jeff carrying Sarah into and out of the water depending on what she is crying for at the time. My job is to chase Jake up and down the beach trying to coax him into the water with me while preventing him from throwing sand on unsuspecting sunbathers. At the end of the ordeal, when we've finally had enough and decide to go home, the kids have epic meltdowns. We usually have to carry them back to the car kicking and screaming. It's definitely not fun, but we're working on a goal that includes socializing, family time, overcoming fears and perhaps building a sand castle.

Jeff remembered a small beach on a local island that we hadn't visited in many years and suggested we try it out with the kids. This beach is on an inlet, so there are no big waves crashing. It is relatively unknown to the tourists and we were able to avoid the crowds. It is absolutely perfect for small kids and overtired parents.

Sarah and Jeff went off to play in the water. Sarah relaxed almost immediately and begin to enjoy the experience without having to be carried constantly. Jake started out nervous and spent 30 minutes walking around and running the sand through his hands (his favorite thing to do). I noticed something was different on this day the first time he wandered too far off. Preparing for the inevitable sprint to retrieve my son, I gave my warning call, "Jake, come back". To my absolute shock, he stopped what he was doing, looked right at me and returned to my side. I didn't have to carry him, threaten time-out or deal with a meltdown, he just did what I told him to do. It was wonderful. After we repeated this scenario a few times, I finally relaxed too.

Eventually, Jake worked up the nerve to play by the edge of the water and later got right in. I not only got to do some swimming myself, but I even had the opportunity to sit down and play in the sand with the kids. I was living my dream of family fun at the beach! It was perfect and I was in heaven. This was as good as it gets...or so I thought.

Jake surprised us once more when he walked up to another little boy and said, "Hi. My name is Jacob. What's your name?" I've practiced that with him for 2 years and this is the first time he did it (and without any prompting!). I was grateful to be wearing sunglasses to cover my tear-filled eyes, but there was no hiding my gaping jaw.

Before we left the house, we 'practiced' how to behave when it came time to leave the beach. No crying, screaming, kicking, etc. I reminded the kids that if they were good when we left the beach, then we could return soon. When it was time to go home, I began announcing that we would be leaving in 15 minutes, 10 minutes, 5 minutes, 1 minute, then time to go. I have employed these techniques before, but on this wonderful day...they actually worked. Even though the kids were not happy about leaving, no one had a meltdown.

It was a fantastic experience for all of us. I can't wait to try it again!

The First DAN! Appointment

When we began our journey on the spectrum, the first specialist we saw was a neurologist. He was kind, knowledgeable and ran plenty of tests that fit within the confines of mainstream medicine. We saw the neurologist when Jake had finally hit the bottom of his regression. At that point in his life, he was only alert and present for very brief periods at a time (often less than one minute). The doctor prescribed a sedative for Jake. I knew then that my son was still in there somewhere and I had to bring him back out. I was already working to expand these periods of alertness and tried to reach Jake at every opportunity. I felt like a sedative would knock out those opportunities and I would wind up losing him forever. I never filled the prescription and have never regretted that decision. (Just an FYI, Jake is alert and present almost all the time now without psychotropic medication).

I have been researching and implementing biomedical protocols on my own since the autism diagnosis. We started with the GFCF diet, then eliminated soy and added powerful multi-vitamin and mineral supplements. We've used digestive enzymes, GABA, melatonin, omega 3's, probiotics, oil of oregano and Enhansa as well many other interventions along the way. Some things worked, some didn't. It was all a matter of trial and error. In spite of my genius (tongue firmly in cheek), I believe that I am missing something in this grand puzzle and the time has come to get some real help.

We recently saw Dr. Harum at the Clinic for Special Children in Wilmington. Dr. Harum is a Neurodevelopmental Pediatrician who participates in the DAN! (Defeat Autism Now!) protocol. I was immediately impressed by her. She clearly cares about the children she treats. She spent several hours with Jake and Sarah. She listened to all of my concerns, thoroughly answered my questions and made some truly useful suggestions. It was the first time I got to talk with a professional who knows more about autism than I do (refreshing!).

We are running a ton of lab tests on both kids. We'll be looking at food allergies and sensitivities, metals, yeast, nutritional evaluations, titers and other things. We are scheduled for a follow up visit next week and most (if not all) of the lab results should be back. I am excited to finally have answers to so many questions, but I am also scared of what lies ahead. What if the kids have multiple food allergies? What if they have to go through chelation to remove metals? What if all of the tests are completely normal and I have nothing to treat (and therefore nothing to blame)? I suppose I'll find out soon enough. I've waited this long...what's one more week?

For help locating a DAN! practitioner in your state, visit the Autism Research Institute's directory.

The List Maker Writes Again

I'm a bit of a compulsive list maker. It helps me stay calm when I feel like my world is getting out of control. When I put my 'to-dos' on paper, I am able to free up space in my brain that would otherwise be occupied with worries and mental reminders of all that needs to be done.

One of my 'to-dos' for today was to write a blog post. But, I also feel like I owe my readers an explanation for my absence in the last week. There has been a lot going on in our household. So much that I feel a 'list' is in order.

Here's the last week in a nutshell:

• The shock of Jeff's sudden job loss has worn off, now we're dealing with the realities that come with it.
• We were in the middle of a refinance on our house when he lost his job. The refinance did not work out as a result.
• The great job hunt is on and I am seriously peeved by companies that advertise commission-only work as 'employment'. It is a huge waste of time to wade through all of those ads trying to find legitimate work.
• We had a series of technical and mechanical difficulties last week, including a broken vacuum cleaner, a computer virus and an intermittent internet connection.
• The kids had their first DAN! doc appointment and there are a ton of lab tests in the works. I'll elaborate more on this in another post.
• 4 words: Three Day Sample Collection. (You warrior moms know what I am talking about!)
• I had to take Jake off of his supplements for the aforementioned sample collection. I now have further confirmation that they were helping with his behavior.
• Jake is out of school and Jeff is home. The changes in routine have been tough on the kids. (It hasn't been a walk in the park for the grown-ups either!)
• Sarah tested as 'very likely' to be on the spectrum. We're going back to the doctor at the end of the month to do the ADOS test and get a definitive diagnosis.
• I threw my back out a few days ago during one of the diaper change death matches with the kids. I can hardly move and only have relief from the pain when I lay down. Of course, laying down is not an option when the kids are awake...and they are almost always awake.
• We learned that Jeff's old responsibilities were immediately taken over by the company owner's daughter-in-law. I'll let you draw your own conclusions on that one.
• Jake got bored with saying marshmallow as a substitute for the "F" bomb. That word has returned and he has added a few more terms to his potty mouth repertoire.
• My secret stash of chocolate is all gone. :-(

There you have it. A quick summary of a craptastic week. Thanks for reading my list of vents!

Transitions

It's been an eventful week here...full of changes, transitions and a few meltdowns (not all of which can be attributed to the children).

I had a meeting with the school principal, the county director of the Exceptional Children's Program and Jake's preschool teacher. We were able to successfully negotiate a good plan for his kindergarten placement next year. I didn't get a one to one aide. That would almost certainly require a lawsuit and I felt like we could meet Jake's needs utilizing existing school staff. The new plan has Jake starting the next school year in a mainstream kindergarten class with an excellent teacher. He will have a lot of extra supervision and I will receive reports no less than every other day. He will also receive advanced reading instruction. This is a trial arrangement and I am comfortable with that. I also think I established a good working relationship with the school officials. They understand that I can either play nice with them or be a rabid pit bull if necessary. The key to the success of this plan lies solely with the individuals implementing it. I would be afraid to try this in another school with unknown players. However, due to an unfortunate turn of events, that may be what happens.

The night before the big meeting at school, we learned that Jeff had lost his job. We are joining the ranks of countless other families in economic turmoil, faced with finding employment in a bleak job market. Honestly, we've both got mixed feelings about this turn of events. Jeff had been working about 70 hours a week and was experiencing intense stress due to work. At home, I was handling everything and burning out fast. We had no 'family time' at all. We were all miserable. We've known for some time that we could not sustain the schedule we were enduring, but there were no other options for us. The job market in our town is nearly non-existent and opportunities for Jeff's level of experience are seriously limited nationwide. I don't know how we are going to get by, but I do believe this will lead to necessary changes that will make our family healthier and happier in the long run. Right now, we're living with an odd combination of panic and hope.

Today was the last day of preschool for Jake. I am so proud of all that he has accomplished but also very nervous for him as he leaves the protected environment of a special education preschool room...yet another combination of panic and hope.

So, there you go. Transitions, changes, fears, hopes and dreams all on the table in just one week.