A Year Later

KMail Update March 8, 2010

Date: March 8, 2010 2:44:29 PM

When you're living with a child with developmental delays and dealing daily with his challenges, it is difficult sometimes to step back and see the big picture of his progress. We have been trying to take time along the way to marvel at how far Zachariah has come in the past year.

            - This time last year, he was speaking in one-word phrases. He now has many sentences that he has memorized and is regularly constructing new ones of his own!

            - This time last year, we were just figuring out that he knew his siblings' names by watching to see whether he looked at them when we spoke about them. He now calls them by name and speaks to them!

            - This time last year, we did not have much hope at all for potty training. He now has more successes than failures!

            - Just four months ago, we told a speech/language assessor that he had asked his first question. He now asks questions of us daily!

Please continue to pray for Zachariah, as there are still plenty of hurdles to clear: his speech patterns, in general are still very typical of the autism spectrum ("You all done?" rather than "I'm done," for example); he still has a ways to go with potty training; he needs to progress in the back-and-forth nature of conversation; etc. But please, also, rejoice with us, praise the L0rd with us, thank Him with us for Zachariah's progress!

Progress

Date: March 11, 2010 9:29:33 PM

Subject: KMail Update March 11, 2010

Back in June, we received a diagnosis that Zachariah was on the autism spectrum. Specifically, he was diagnosed with PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified), a term for those on the spectrum who don't exhibit all of the symptoms of autism. We received this diagnosis a few days before we were due to leave the States and return to the Middle East. After making a quick trip to the local Barnes and Noble where we were stayingin the US and consulting with some friends who've walked through and out the other side of their own son's autism diagnosis, we returned home armed with some information and determined to do what we could to see Zachariah completely healed. 

As we got back to Jordan and moved into our new house, we began to make some changes in his diet and began to do some other types of therapy. Now, five months since his diagnosis, we've seen some improvement. He's able to put together more sentences and make himself understood. He's much calmer in his behavior and his sleeping is better. We're thankful for all this, of course, but there's still a long ways to go, and the window of time for the most effective treatment for him is now.  

Diagnosis Announcement

Date: June 12, 2009 7:30:42 AM
Subject: KMail Update News Flash: Zachariah's assessment

We met with the assessor regarding the results of Zachariah's evaluation. The extensive testing concluded that he has PDD-NOS (Pervasive Developmental Delay--Not Otherwise Specified). This is a diagnosis on the autism spectrum, but not full-blown autism. The chart below helps illustrate what he has symptomatically, as we understand it. Those with classical autism exhibit symptoms in all three areas, while those with Asperger's and PDD-NOS have symptoms only in two areas (by the way, we recognize we are probably way oversimplifying the issue--we are not medical personnel--we're just restating things as we understand them from what we were told and the literature we were given).

*Also diagnosed as PDD-NOS, but not the same as Zach's symptoms.

Please pray for us as we return to the Middle East with Zachariah and the rest of the kids. Both of us, especially CBK, feel pretty overwhelmed at the thought of not only moving and having a new baby, but also the added investment that comes with this diagnosis. We are exploring everything from behavioral therapy to diet changes for Zachariah in order to help him as much as we can to grow and develop in his ability to communicate. We are pr4ying and believing for his complete healing, and we covet your pr4yers at this point for that as well.

Testing Update

Sent: Sunday, May 17, 2009 8:16 AM
Subject: UPDATE: Special KMail

We are so grateful for your prayers this week as we have been walking through the process of testing Zachariah to determine the cause of his language delay (and, ultimately, to determine how we can best help him to catch up).

CBK's interview with the tester, CL, on Tuesday went well. They were able to finish early, even, primarily due to the fact that Zachariah does not exhibit many of the potential behaviors associated with language delay. Consequently, CL was able to flip past several pages of the interview booklet from which she was working.

On Thursday, CL spent a little under two hours with Zachariah testing such things as his ability to follow verbal and facial clues (without gesturing). She thought he was adorable (of course!) and saw his reasoning abilities at work as he figured out how this toy or that one worked. CL was also able to see, though, that Zachariah rarely uses more than one word at a time, which is our biggest concern.

At the end of the session, she asked to set up another time to work/play with Zachariah to further her assessment, so we will be meeting with CL again when we return from our trip to see family. She has reserved the room for two one-and-a-half-hour sessions on the 29th of May, although she may or may not need that entire time.

A funny "out-take" from the session: due to having a mommy who is less than enthusiastic about play options that lead to potential messes, Zachariah has not had a lot of experience with Play-doh. Consequently, when Miss CL put a white piece of stuff on a plate in front of him and told him it was "cake," he took a bite of it. Mommy explained to Miss CL that that was due to inexperience with Play-doh, not lack of imagination. :-P

We appreciate your continued prayers as we press further into the process of determining how best to help Zachariah to learn to communicate. Today was a particularly hard day in which there were many times we had no idea what his desires were, and he was obviously frustrated by that, as were we. Thank you for praying towards healing in this area. Specifically, we are asking that "Zachariah's mind would be renewed."

Background

Hm, it's been a while. Maybe I was a little unrealistic about my expectations of available time with all of our life commitments. But I still feel strongly about getting all of this down, so I'm going to jump back in.

A new mentor friend is taking a class related to becoming an educational consultant for families living overseas, and she asked for the background of how we first became concerned about Z and how we got his diagnosis for a project she was doing for her class. As I was about to type out the story (thinking, "Ah ha! Finally I'll have this written out to copy and paste to the blog! :-), I realized it was already written out somewhere.

We send out periodic family e-mail updates, and I'd written a few special ones explaining why we were having Z tested and asking for specific prayer for the testing dates. I forwarded these e-mail excerpts to my friend, and I'm going to post them here, with their date of origin. Hopefully, that will give new life to this blog, and I can get back on track. If not, at least the random few people who wander by each week will have a little more info. :-P




Tuesday, May 12, 2009 1:21 AM
Subject: Special KMail

We wanted to send a brief special update to some close friends and family requesting prayer this week.

As many of you know, we have become concerned as to Zachariah's lack of expressive and receptive communication. Basically, he does not engage in conversation as a child his age (3 1/2) normally would. We know that he is capable of speech, but he is not using speech beyond a rudimentary communication of needs ("water, please," "more, please," etc.) and an occasional flash in which he uses a complete sentence (twice in the past few days, he has said, "Turn it off, please," regarding the radio in the car :-).

A little bit of background: as Zachariah was nearing his third birthday this past fall, we became more decidedly concerned about his lack of speech, so we took him to see our (American) pediatrician in the capital. At that point, he was still within the lower range of normal for his age, and she recommended waiting six months or so and re-evaluating at that point.

Zachariah has definitely made progress in those six months; however, since arriving in America, seeing him in various classrooms full of his peers (such as in the nursery at our church), it has become even more evident to us that he has a significant verbal delay. Even during our time here, he has made more progress, but we decided that we needed to take advantage of the opportunity while in the US to have him tested to determine if he was still within the range of normal or whether he needed any particular extra help. Because he has been making progress (even to the point of beginning to read some short words!), we probably would wait further, if we had the option, but since we are leaving in a month, time was of the essence.

Starting tomorrow (Tuesday), we will be going through a testing process with the local university Psychology Department. I (CBK) will have a four-hour interview with the tester to begin with. Then, on Thursday, the tester will spend a couple of hours with Zachariah one-on-one. It will be a couple of weeks before I will have a final session with the tester to hear her assessment. The young lady who will be doing the testing is a doctoral candidate under the supervision of the head of the department. This setting allows for high-level, in-depth testing at a very reasonable price, and we are very fortunate to have this option.

Once we hear the results of the assessment, we will share in our general update, but we covet your prayers this week as the testing is going on.

Please pray:
- that everything relevant will be uncovered.
- that CBK will share everything important regarding Zachariah's behaviors.
- that Zachariah will be cooperative during his portion of the testing.
- that Zachriah's behavior during the testing will shed light on his particular situation.
- that the tester (CL) will have insight into Zachariah's needs and abilities.
- that the tester's supervisor will provide any extra insight necessary.
- that, ultimately, we would have clear direction as to how to help Zachariah progress in communication.

As you can imagine (and some of you know from experience), it is very disheartening not to be able to communicate with your child as he is growing to a point where that is helpful and necessary, and we covet your prayers that we can make progress in this area.