Saturday, May 31, 2008

Happy Birthday Jake

What a wonderful day. I had been pretty tormented over Jake's birthday. I wanted to honor it somehow, yet I didn't want to have a big party, with the stress of family and a lot of kids, and then have Jake be in full attack mode or wanting to hide in his room. I finally decided, in the middle of the week, to ask two of our closest families of friends to come over and help us celebrate. Both families are very understanding of our situation and know Jake well, so there was no pressure for him or us. April and Nick came with their three boys and Heather brought Bridget. It was just the right number.

I ordered an organic cake from Greenlife Grocery and we had organic hotdogs and hamburgers and chips. Nothing fancy or difficult.

We all played outside, and then when it was time for lunch. Jake was too riled up to eat much, but when I mentioned birthday cake he was all over it. A boy who usually yells "NO!" and hides when people sing to him, grinned SO big my heart almost melted when we all sang happy birthday. Then he blew out the candles like a pro even though he's never done it before (I guess he's seen enough America's Funniest Videos to get the idea). He munched on the most delicious cake I've ever tasted, and then retired to his room to rest alone for a few minutes. Then it was back to playing and he opened his present from Mom and Dad... a handmade wooden treasure chest with real "treasure" inside. The kids had fun making a robot head out of the box and playing with the bubble wrap before everyone went home.

I am so glad that I decided to do something for him. Sometimes its hard to know what Jake is thinking, but I really think that he realized that today was for him. I am so grateful for our friends who helped us celebrate. They are really two truly special famlies. Of course, I was so busy the whole time that I only got two pictures.. just before he blew out the candles. The dude in the picture is Nick, who was in charge of the cake and pyrotechnics... Steve was busy consoling a sleeping baby.

Happy Birthday Jake, we love you.

Thursday, May 22, 2008

What would a Packrat Pack?

Jake's hoarding behavior has reached an all-time high. He takes little (and big)things into his tent.. and well, I'm not sure what he does with them there. He holds them, looks at them, most recently loads them into his John Deer tractor bed, and basically just packs them away. I cleaned out his tent on Tuesday after the "Puzzle Fiasco." Jake managed to find a box of puzzles and took all of the pieces, probably 100 in all, out of the puzzles and packed them all in his tent. This obviously sparked the desire for more puzzle pices, so he found everything he could find that even LOOKED like a puzzle piece and packed those in too. Then he fell asleep. When I went to check on him it was quite a sight. In many ways its funny and endearing, but my heart sinks a little when I see him doing these types of things, because I recognize it as compulsive behaviour.

The puzzles are all put away, except for one favorite one, and he must have packed those pieces in sometime yesterday. If I try to catch a few minutes sewing and see Jake run by the sewing room door to the family room, hear some rustling around, then hear him run by the door the other direction, wash-rinse-repeat, I can tell he's found something new to collect, one piece at a time. I recently got a newsletter from Parentcenter (ugh, I need to remember to un-sub) that was titled "Your three year old, His first collection." Yeah man, if you only knew.

The question "Have you seen my ______?" is often answered "Have you checked Jake's tent?" these days. Cell phones, kitchen thermometers, work badges, and sewing scraps and equipment (nothing sharp, he won't touch scissors or knives), nothing is safe. Every single piece has significance for him, and even tiny scraps of paper or wrappings are not just random trash.

So, without further ado.. here is today's bounty. This is less than 48 hrs worth of work for him.

Monday, May 12, 2008

A good day

It was cold and windy today, and I wanted to get us out of the house. I remembered how much Jake used to love the aquarium when I had a membership, so I asked him if he wanted to go there. Judging by the way he tore off his pajamas, helped me pick out his pants, shirt and shoes, and then standing at the top of the stairs saying "Ride car, penguins, ride car, butterflies, ride car, sharks!" I think it might have been a good suggestion. I was just glad to hear him talking that much.

We had a good time at the Aquarium, he ran around and yelled out all the names of the critters. We only had one real melt-down and that was just the usual one when leaving the aquarium. I think I'll be buying a membership again.

While Jake was taking a nap after we got home, I noticed that he'd organized all of his fridge letters. Thats something he hasn't really done in a while. I was glad to see it. I've missed the old Jake.

We had fun at dinner time. Manny was entertaining himself, so Jake got a ride in the carrier while I got dinner ready. He spotted a banana on the counter and asked for it.

Even more surprising today, Jake picked up his markers and began to draw. He hasn't really drawn in what seems like months.

I captured a bit of video today showing Jake stimming on the back porch. He wasn't doing it here, but lately he's been making a noise "Whoooohooooohooooooohooooo" while he runs up and down railings like this. Today, inside the aquarium, he would make the noise the entire time we were on any of the catwalks. He was quite consistent. It was like walking with a little fire engine. It was interesting but not all that worrisome. Reading some accounts by adults with aspergers and autism makes me realize that his stimming isn't exactly a sad or neurotic thing. Its still worrisome to me and I tend to ask him if he'd rather go outside or something if he's laying around, and the roadside behavior has to be stopped for his own safety, but I am beginning to understand that he does these things for a reason, and finding them more interesting than scary. So... here's the video, beginning with the porch stimming and laughter, and ending with some amazing drawing footage. All in all it was the best day in a long time. It was glad to hear my little guy talk and laugh. Turn up the volume so you can hear his constant clicking. Enjoy!

Sunday, May 11, 2008

Regression or Reaction?

Jake has been having some really good days the past few weeks. His speech has been improving, and we are seeing a lot of appropriate speech.. at least, until last Wednesday. On Tuesday Jake went to Mamaw's house (Mamaw is my grandmother and Jake's great-grandmother, she is 80 and very physically and mentally capable). He goes one day every week to Mamaw's house. Many weeks ago I noticed that Jake is especially wild and hard to deal with in the days following a trip to Mamaw's. I think that many parents would probably agree that their children are hard-to-deal-with after being spoiled for a whole day during a trip to grandma's. I chalked it up to that, and decided to pay a little more attention, and asked Steve to do the same.

As usual that evening, Jake was wacky when he returned home from Mamaw's. He wasn't hungry, after being stuffed full of country cooking and a bit of junk food, and cried pretty much constantly until bedtime. Not unusual. However, the next morning, Wednesday, things definitely weren't right. Jake refused to come out of his room all morning, and I had to dress him and change his diapers in his room. He barely ate breakfast, and went directly back to his room where he laid on his floor and stimmed in the quiet darkness. I didn't think too much about it, though, and around 10 AM we left for the post office and to meet friends at the park. He clicked his tongue and hissed loudly all the way to the park, and occasionally had outbursts in the car where he would yell nonsense then hit himself "whack whack whack!" on one cheek then the other with his open hands. I was perplexed and worried, but continued to the park.

Once we arrived at the park Jake ran straight for a street sign that is positioned at the entrance of the park, and wouldn't leave it. Occasionally, if I tried to coax him towards the playground, he would run to a post on the pavilion, neurotically slap the sides of it with his hands while banging his forehead, then run back to the sign. He ran this gauntlet several times and only stopped eat a little banana. My friends, both very pregnant with kids under 3, were having opposite troubles chasing their children all over the park, so I suggested that we reconvene at my house. Things didn't get much better then, as Jake was highly aggressive, throwing himself bodily all over the place, and basically acting like a feral child. He finally ran to his room, went to his tent, and refused to come out and would kick and scratch if I tried to touch him. I gave him some milk and turned on his Baby Signing Time and he fell asleep for over four hours. I realized, once he woke up in a similar mood as before, that he had not spoken a word all day.

I had called Steve during Jake's long nap. I was obviously distraught and felt something had gone horribly wrong. He urged me to call Mamaw and ask her what Jake had eaten that day. I called her and, hoping to benefit from being a bit dramatic said "Jake is having an allergic reaction. Can you please tell me everything he ate yesterday." She didn't buy it, and asked "What is he doing?" I tried very hard to glean information from her, but she wasn't cooperative. The only things that I suspected were ice cream bars filled with colors and additives, and a butter "replacement" that she uses in all of her food (what is southern cooking without lots of butter, and what's healthier than "fake" butter?) that contains TBHQ among other chemicals and preservatives. I had an empty tub from the butter substitute because she sent me home with leftovers in it. I was horrified at the ingredients. I suppose I may sound like someone overreacting, but it was so obvious that something was going VERY very wrong with Jake that day.

Mamaw was extremely combative and defensive when I tried to explain the food issue with her. She "shut down" and made me feel terrible. I was at a loss as to what to do and called my father. He promised to talk to her, and later did, with a lot more success than I had. I am still torn about sending him over and just wish that she would A)accept that Jake has issues and B) at least have an attitude that she is willing to try to understand and work through this with us. I have long been wary of food additives, long before Jake was born, but seeing my child in obvious pain and suffering due to "something" is enough to drive me insane.

Jake has since recovered to some extent, although I am still not seeing the language skills that he was showing a week ago. Is he simply regressing, and I am trying to grasp at straws and blame something or someone? He did so well at the festival, and we were so careful not to feed him anything icky, no matter how tempting it was to eat junk food while camping.

I guess I could be labeled as an overprotective mom, but honestly, I would give anything to be able to send Jake to preschool, or Mamaw's house and have him eat all the junk food in the world.. worry free.. while convincing myself that it was OK for him to just have it "sometimes." Could there have been a link to the food that he had at preschool, and the intense problems that he experienced there??

Meanwhile, I am anguishing over Jake's third birthday. I don't think that we can have a party. Jake has only a couple of friends who are capable of handling his aggressions. Alternately, we could have friends over and he would shut himself in his room. I probably won't try to have too many more playdates at my house, as I can't leave him unattended for more than a few seconds or he tends to "attack" other children. Going to the park is frustrating because he wants to move as far away from the play equipment as possible and hide behind a sign or worse, a vehicle. I did finally find a solution to going to the zoo or aquarium, and it seems to be to put him in a stroller, where he feels safe and less likely to break down. I can take him out of the stroller and let him walk, but he often begs to be put back in. At least using the stroller with Manny on my back in a carrier I can get us three out and in the world. I still get invites from the friends who aren't terrified to have Jake around their children, and it is totally unlike me, but my heart just sinks when I get them. I wonder if Jake will have a good or a bad day, or if I will end up trying to restrain him while he kicks and bites and pulls his own hair, or if he'll hide in the bamboo at the zoo while I wonder how the heck I'm going to get him out with a baby on my back.

Needless to say I'm having a bit of a hard time right now. I want to get Jake some help very soon, though just running the errands to get that done is a feat in itself. I'm struggling with feelings of guilt, both from feeling selfishly like I'm being isolated because of my child's behaviour, and from my oversensitive nature and actions these days. While shopping at my favorite grocery store I found myself in a conversation with the lady who stocks the health food about ice cream bars (I was looking for a substitute to send to Mamaws) and mentioned "Jake reacts to additives, he has a developmental disorder." She laughed heartily and said "OH, no he doesn't!" I wanted to punch her. I was right then so angry that I thought that I might actually commit an act of violence. I was glad that when I just turned and walked away, she didn't follow. I must get these feelings under control so that I can concentrate on helping my kid, and not on my own anger and frustration. I also feel like I'm not focusing enough on Manny. I spend more time watching him to make sure that he's "typical" than anything else.

All that aside, we've had a wonderful weekend and Mothers day. Jake seems to be speaking a bit more the past two days, and whatever it was that spawned his regressive behaviour seems to be "wearing off." We'll see what this next week brings.

Monday, May 5, 2008

This weekend was quite a success. We didn't stay as long as planned, but we felt that it was extremely important for this trip to be a positive experience for the boys. It was supposed to begin raining sometime in the early morning hours Saturday morning, so we stayed as late as possible Friday night and then came home. We had a big tent set up as a play area and sleeping area for the kids. Manny and I slept in the camper and Jake and Daddy slept in the tent. Pictures can be found on this page. I also shot a quick silent video of Jake running around the festival. He would run like for almost that the entire time that we were down at the stage. Notice the hand-flapping and circling.

Now that we're rested up I will be spending this week trying to get materials together for the special education department for the school system. I'm hoping to get Jake some therapy before August. I just can't sit around and do nothing, although I would much rather be spending the beautiful spring days with my boys instead of running around getting paperwork together. I'm also worried about the hearing screening, since Jake won't sit in an office situation, let alone let someone touch him with instruments. I am confident that he has no hearing or sight problems, so we'll see how it goes.

Meanwhile, Jake still makes leaps with his speech. He absorbs more and more signs every day. This morning he handed Manny his sippy cup and said "Baby drink." Then look ate me and said, "He's thirsty." It may not sound like much, but any time Jake uses appropriate speech it is a very big deal to us.

Here's a slightly gruesome tale to illustrate how he uses sign and speech together: The other day he was playing outside accompanied by our dog, Bree, with one of his favorite playthings, a caterpillar. His dad and I were just inside the door, so we did not see what happened, but suddenly heard Jake crying hysterically. We ran out to find him yelling "Bree! Caterpillar! Bree! Bree! Caterpillar" He was also signing the word "eat." Ahhh.. well, Bree had eaten his caterpillar. We comforted him and found another caterpillar for him to play with, however the fact that he had been able to portray what had happened to us was just huge.

Hopefully with speech therapy, we can learn more about whats oh his mind.