The Big Van

I was sad to see her go, but our family has just outgrown my little red Jeep. We now have a Dodge Caravan Minivan. I really like it and we went for our first family ride today. Jake keeps insisting on going down to the garage just to play in the van. I think he likes it, and he drew this today. I asked him what it was, although I had a clue. He said "Big Car!" I was especially amazed when I asked him what the various dots were inside. Those are Mommy, Daddy, Baby Brother and Jake.

This isn't much of an update, as I am still in limbo waiting for things to happen and getting in touch with various resources. Jake continues to improve his vocabulary and the different approaches we are using to help him along are really working. If I weren't so exhausted from the weekend, I'd go into more detail. More to come soon!

And now for something a little different...

I realize that many of my blog posts tend to be negative and angry. I suppose I just write more when I'm having strong feelings about something. I did want to post on the many many positive things that are happening.

For one thing, we are blessed to have a very very sweet and caring young man as our son. Jake loves his dad, his mom, his Mamaw and Papaw, his Grandy, his dog, his baby brother, and other children. Sometimes his actions can be described as "aggressive" or "violent" however he doesn't have a mean bone in his body. He will pull or push on other children but never with the intention of hurting them. It just seems that he doesn't yet understand how to interact correctly, and thats just what he does instead. At home we find ourselves joking, "Love hurts, especially when it comes from Jake." Jake will just get overwhelmed with emotion and grab and pinch and jump (sometimes almost breaking my nose with his skull). But everything he does is done with the intention of being kind, even if it doesn't come across that way. He loves babies, and will run up to strollers carrying babies of first-time-moms.. peer in and say "BABY'S SLEEEEPIN!" at the top of his lungs. He'll exclaim "I'm so CUTE!" (Jakese for "you're so cute") and wiggle his fingers an inch above the baby's head just barely able to contain his desire to touch the baby. This always goes over well with new mothers. I just shrug.




For a very long time we've dealt with huge tantrums when it comes to transitions, leaving the park or any place fun. We've tried "We're leaving in 10 minutes" then "5 minutes" then so on, but to no avail. A friend who works with ASD kids (thanks Carrie.. you don't know how much you help me) suggested that I get a picture of the car, and show it to him several times before we leave.. giving him a visual cue. I vowed to try it.. then, a few days later, I found myself at the aquarium with no picture of the car. I had forgotten. Instead, I thought about how Jake always signs "Car" when he wants to "ride car" so I started signing and saying "car" several times before we left. No tantrum. Same thing the next day at the zoo. I ALMOST got to the car before I remembered to sign to him, so we walked the long way around and I stopped 3 or 4 times to tell him in words and sign. Again, no tantrum. I'm learning to use a combination of words and sign to transition him to different situations, and it is working wonders. I have to say that we LOVE "Signing Time" around here, and so far we own 6 of the tapes. I can't even watch the songs sometimes without getting all teary eyed.

There are still scary times and times when I am angry, but despite the tone of this blog, sadness and anger does not dominate our lives. This weekend, although we were unable to camp overnight, we had an amazing fishing trip and lots of outdoor play. Jake doesn't always do what you expect him to do or what other kids might do. For example while the rest of the family waded, he found it more fun to run up and down a hill near the creek and occasionally check out the bucket full of critters that we were netting in the shallows. He still had fun even if he didn't care to participate in our selected activity. He is a fun and funny little guy with a lot to offer, and we are blessed to have him here with us.

Vaccines, birth, autism, and my son

This is a post made to some of my local group message boards. I hope that it doesn't cause drama:


Jake was born in a hospital. When I was pregnant I read "What to expect when you're expecting" and the "American Academy of Pediatrics, Caring for your Baby and Young Child." I guess I didn't know any better. I wanted a natural birth because I was afraid of surgery, it was totally selfish. I was also interested in babywearing, so I started "hanging out" in the online circles that promoted natural childbirth and babywearing. I felt that the mamas who didn't vaccinate and who breastfed their babies past 6 months or so upheld a totally different level of crunchiness than I would never achieve.

I truly felt like I (and when I say "I" i mean "we" because my husband was totally there with me in making every decision) made educated decisions when I decided to birth in a hospital, circumcise my firstborn son, and vaccinate according to the schedule recommended by my pediatrician.

My son, Jake, developed poor muscle tone and a many other gross motor issues before the age of 18 months when he finally walked. He was evaluated by the local early intervention program at that age and found to have no significant delays. Now, at the age of 3 years, he has a severe speech delay accompanied by a host of other symptoms. I am on an amazingly long waiting list to have my son diagnosed. However, I'm not stupid, and I can navigate the internet. I know that my son falls within the autism spectrum.. and most of the time I feel that he will be "high fuctioning".. however, other days I wonder.

I can actually look back at my blog and find when Jake started exhibiting symptoms, and yes.. it does correspond to a particularly bad case of "fussiness" after a round of vaccinations. The fact that I wasn't the least bit suspicious of vaccinations at the time makes it even more heartbreaking to go back and read. It is a particularly dark place that I visit when I think of these things. I want to say that I don't 100% blame vaccinations, because there are neuro-typical kids out there who are vaccinated, I just wonder.. and I always will. My ideas on what has caused the "outbreak" of autism doesn't make for interesting reading for the purposes of this particular post.

I'm not sure where I'm going with this post, but I wanted to get a few things out.

The other day while I was visiting my food coop, I was discussing the evil icky things in foods these days. I mentioned that I had an autistic son (its simpler for me to use the term autistic, instead of PDD-NOS or whatever) and was afraid of all additives. The ladyI spoke to went on about the latest miracle cure diet that had "cured" her relative.. and as we discussed various issues finally asked "Is your son vaccinated." I said "yes.. he was fully vaccinated" and she said "that is probably what caused it" and walked away.

My second son, now 9 months old, was born at home, is not circumcised, is unvaccinated, and will probably be exposed to very few food additives. Will he be "like Jake"? I have no idea. Many will say "of course not". I watch his every move.

I am and will always be an advocate of homebirth and natural parenting, in fact.. since my husband and I are no longer planning on adding to our family, I find myself still VERY interested in childbirth and changing the business of birth in our socieity. I hope to get involved in birth on some level once my children are older, either as a doula, childbirth educator or midwife. But I ask you all please PLEASE be gentle with those who are ignorant of your particular practices. If I had the chance to meet myself, as a pregnant first-time mother.. as the mother that I am today.. gosh...what would I tell me?

Thanks for listening

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.

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.

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!

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.