Monday, July 28, 2008

Yay for Peds Care

Ok Ok, finally a moment to sit down and write about Jake's appointment with Dr. Michaels today. Our appointment was at 8 AM sharp. We waited in the waiting area for about half an hour, and Jake was surprisingly comfortable. There was a big fish tank with big fish for him to yell at, and the waiting room is full of little partitions and cubby holes for him to run around. His favorite part of the waiting room was a little newborn baby that showed up. The Daddy let him peek under the blanket and to Dad's delight Jake said "Baby Brother KISS!" He also decided that he needed to pee pee in the potty during our wait, which killed a little more time.

Once we were taken back he was a little more anxious. He, of course, would not stand on the scale and was distraught when we took off his shoes. We weighed him on the baby scale and he barely tolerated the blood pressure cuff and thermometer. The nurse was a little bit pushy about things, especially wanting me to take Jake's clothes off and dress him in the gown. I knew that undressing him would be the beginning of the end, so I just kept saying "OK" and then not doing it. When she showed up with a vaccination before I'd even seen the Doctor, I firmly told her to back off. I had hoped not to get a shot on this very first trip, because I was trying very hard to make it a good experience.

It was 9:45 by the time Dr. Michaels came into the room and Jake was still relatively happy. Thank the universe Jake did not have the same reaction to him as he had had previously with Dr. Ho. I instantly liked Dr. Michaels and tried my best to hit the high-points of Jake's development and our previous experiences. He assured me that I didn't have to tell him everything today, as this was going to be a process, and that we'd learn more every visit. He managed to engage Jake in the "blowing out the candle" game with his otoscope. Jake giggled and wanted to play more saying "Hey! I blow dat!" He was able to do a thorough examination (without removing clothing) with only minimal whining on Jake's part. I was amazed.

So what did he say about Jake? Well, of course he is not a developmental specialist, so he can't make a diagnosis, but feels that Jake definitely falls into the autism spectrum . He also commented (more than once) that Jake was an intelligent, bright, and delightful boy (we already knew that) and that he had great potential and would be found to be a very high functioning autistic child. He also commented more than once that we had done a great job with him so far with the way we worked with him and the sign language, etc. It never hurts to hear that from a professional when you feel like you're struggling most of the time.

The course of action that he suggested was to take Jake to a developmental specialist for a diagnosis and, should I want, to skip the evaluation at the Team Centers. He said that he rarely refers to the Team Centers simply because, with these high functioning kids, the Team Centers experience tends to be appointment after appointment, with more appointments after, while getting the same results as getting a diagnosis from a developmental pediatrician. The DP will be in Chattanooga. I'm not sure when that appointment will be, I need to call the office back about that.

Dr. Michaels went ahead and wrote a prescription for occupational therapy, and we made an appointment for next friday (Aug 8) for a speech evaluation. I plan to try to use Tips for Children, Dr. Michael's wife's therapy office to begin Occupational and Speech therapy. Dr. Michaels also said that he can help me push the school system for the free therapy services, however getting a good therapist with them can be hit or miss, and I can decide to use them or continue using private therapy when the time comes.

We also made an appointment for Manny with him this Friday. I'm really happy about that, as Manny hasn't had a check up since he was about 4 months old, as I've been sort of "between pediatricians." I have minor concerns about his development too, most of which is probably paranoia.

Jake also has an appointment in 6 weeks with Dr. M for a re-check.

Now comes the time to wonder... how in the world will I juggle all of these appointments. Mamaw can watch Jake, but I'm afraid Manny may be almost more than she can handle despite the fact that she goes above and beyond making sure that she is connected and has a relationship with both boys. Steve can take vacation days for some of the bigger appointments, but I'm afraid that I'll be taking Manny to many regular therapy appointments that come up. I also thought about, since Jake and Mamaw are so close, taking Manny over and sitting with Papaw while Mamaw accompanies Jake to some of the therapy sessions. I think it would be great for them both and she always enjoys being involved with everything that we do with the kids. I'm working all of it out in my head, and it will all get done, no matter what, its just a little overwhelming sometimes.

All in all, it was a wonderful day and I feel like a giant weight has been lifted. We truly have a knowledgeable and kind person on our side to help Jake be the best that he can be.

Sunday, July 27, 2008

Is this good or bad timing?

Last week Jake went with his Dad to visit his grandparents in Florida. They were gone for 5 days and 4 nights. It was quite an adjustment for me, thats for sure. Jake had a blast in Florida, was a total angel, according to Steve, and only had a couple of "need Mommy" moments. Of course, he was ready to go Wednesday morning at 5:30 AM and was in the truck to come home. I'm not sure if it was the adjustment, or the diet of additive filled food or a combination, but the poor kid is a mess.

Jake's appointment with Dr. Michaels is tomorrow, and last week I was honestly wondering what we had to complain about besides his speech. His stimming had dramatically decreased to almost nothing, he was really focused and I was just astonished at the jumps he was making. The past few days he has been a stimming, non-verbal, INTENSE little boy. I truly hope that we wakes up in the morning feeling better and that our appointment goes well. Not that I don't want the Doctor to see him acting himself, it would just be nice if we would get a chance to talk without Jake going off the deep end. I'm a tad nervous. Our appointment is at 8 AM.

Tuesday, July 15, 2008

Jake Helps and Recycles

The day I got pregnant with Jake I started planning. Doesn't every mother? Aside from the regular "gear" gathering and nesting, I began to plan for the cool stuff we were going to do... music festivals, camping, playdates. When I would see someone with a happy toddler dancing to the music at the market I would ask them how old the baby was. "13 months" they might say and I would think "Oh wow, when my baby's a year old he'll be dancing at the market!"

I kept asking others how old their babies were after Jake was born. Thats when I started noticing his delays. It was becoming pretty apparant that things weren't going as I had so carefully planned out in my mind.

I was and still am quite a big disappointment to my own family. I'm quite the black sheep, and as a result I have almost no relationship with my family, save a still tentative and stand-offish one with my father and Mamaw. I get the feeling that I didn't go as they had planned either. Unfortunately, I didn't "go bad" until my pre-teen years, as far as I can tell.

Sometimes I feel really lucky that I am learning about Jake's differences and what I can do to help him so early. It has made me accept that my "plans" have been thwarted, and appreciate that maybe my plans weren't that great in the first place. The new path that I'm taking is probably much more interesting than just trying to keep doing the things that I did as a younger person while dragging my kids along. I had planned to show him the wonders of life, instead both boys are showing ME a thing or two.

One of the things I've really felt left-out on sometimes is doing "activities" with Jake. You know, you see the cookie commercials where mom and 3 year old are mixing cookies and are both covered in flour and laughing. Or the images of moms and kids playing with play-dough during "craft time." I've just never been able to get Jake to do these hands-on activities with me, and so very often trying to do anything "my hands on his hands" results in a very angry child going "boneless" until I let him go do his own thing again.

Today I had set several cans of beans on the counter in order to make foule (a spiced bean soup) and Jake brought one to me, sat it down and said and signed "beans, eat!" I took this as an opportunity to see if he would help me with dinner. Well, with the help of sign, the activity went better than I could imagine. He poured the beans in the strainer after I opened the cans and showed him how. He helped me dump the strained beans into the crock. Then we shook lots of cinnamon and cumin and chili powder (hope Daddy likes really spicy soup) and then he stirred it all himself, added a little more water per my request, and stirred again. Then we tasted. Tonight we eat the first meal made by Mommy AND Jake. I was so happy, and I hope that Jake has a sense of pride eating something that he helped to make himself. I know Daddy will be proud.

About Recycling? You know we do it in this house. I've been recycling since before it was "cool" to do so.. pretty much since I moved out of my parent's house at 18. This past weekend after a party/concert at a friend's house, Jake and I went down to the stage area while Daddy broke camp. The revelry the night before had left a few bottles and cans discarded on the ground. Jake is already obsessed with recycle bins and knows the recycle symbol. He was happy to help me pick up a few things and deposit them in the bins. When we got home, I went to his room only to find it completely devoid of toys on the floor. Huh?! I usually pick up a few times per day just to make sure he doesn't fall and hurt himself on the carpet of toys and things he dumps out in there. Despite daily tries, I've never gotten him to participate in clean up. I looked all around and finally noticed a collapsible laundry hamper was shoved full to popping with all of his toys. I asked what he was doing and he said "Clean up, clean up! Recycle Bin!" (which he pronounces "recycle BEAN!"). Since the clothes hamper didn't look like it was going to last much longer, that evening I presented him with his own homemade recycle bin. His room has been so much cleaner since.

Wednesday, July 2, 2008

A Doctor

I have been very frustrated trying to figure out the next steps to take with Jake. The school system won't return any of my calls and my attempts to take Jake to any pediatrician have failed. He simply won't be examined. I just don't think I can sit one more day feeling like I'm doing nothing. I am too impatient for the testing at the Team Centers, still two months away. The testing itself will last for another 6 weeks, so we won't even know results until mid-September. Besides, that will just give us a medical diagnosis to help us better decide what therapies to pursue. I'm dying to get him into speech therapy and occupational therapy.

I was recently trying to make a well-check appointment for Manny. I asked one of my mom's groups if they had a pediatrician recommendation and a friend, Heather, mentioned that there was a Dr. Michaels in Dalton who had advocated for the local early intervention program (Babies Can't Wait). She also said that Dr. Michaels' wife, Cindy has been her daughter Bridgett's therapist since Bridgett came home from the NICU (Bridgett has cerebral palsy). Somehow this information sort of went through one ear and out the other, life happened, and I never made an appointment for a well-check for Manny. While at the Dalton Market on Saturday, someone told me about Dr. Michaels again, and told me that a friend of theirs had had wonderful results with their autistic child while using Dr. Michaels and his wife's therapy services, even getting an in-home therapist. I went back into my emails and checked to see if that was the doctor that Heather had mentioned. I suddenly realized that if this was a FAMILY of doctors who worked with special needs children, and who had worked to help the local early intervention program, then they must be a family who cares about kids like Jake. I decided to give them a call.

The receptionist told me instantly that Dr. Michaels was not taking any new clients. I hung up and was heartbroken. Another dead end.

I went back to sewing. I do my best (and worst) thinking there. I just couldn't let a good doctor lead get away, so I called them back. I told the receptionist that I knew that they weren't taking new clients, but could I please plead my case and didn't give her much of a chance to reply. "I hear that Dr. Michaels works with special needs children," I said, "I have a 3 year old son who has managed to slip through the cracks of the Babies can't wait program twice. I have asked them as well as my previous pediatrician numerous times 'Isn't ___ a symptom of autism.' and been told that Jake is fine. Jake has numerous symptoms of PDD or autism and has little or no expressive language, stimming behaviour, never asks questions, and has other speech and social delays. He can't be examined by pediatricians I've tried in the past, and I can't get anyone to help us... if you could just leave Dr. Michaels a note or something...?" She told me to hold and went away for 15 full minutes. I was pretty much convinced she'd just put me on hold hoping I'd hang up and go away.

She finally came back and said "It must be your lucky day." YAY! We have an appointment on July 28th. Not only did she treat me so nice, but she asked if there was anything they could to to make it easier on him. I told her that he was happiest in the morning, and didn't do well with wait times. She made my appointment for first thing at 8 AM, and they will see him ASAP. All I need to do is a little legwork (I'm used to legwork) to get some forms filled out and his charts transferred.

I'm so glad to have found a local resource. I will sleep a little better, I think.

Sign, Sign, everywhere Sign.

Anyone who knows me knows that I'm really open to talking about Jake's issues. Being so open and talking about it a lot has opened up a lot of doors for me. I guess I wear my heart on my sleeve a bit, but besides being constantly amazed by the crazy things people say, I get lots of information this way too. Most recently I was speaking to a member of my community about Jake and mentioned how sign language has helped him. "Oh, you can't make it easy for him, he has to learn to talk!" she said. I find that it is an extremely common misconception that teaching a child sign language will delay their regular speech. In reality exactly the opposite is true. Hearing children and deaf children alike will mimic the person they learn from, and as long as the person teaching the signs speaks, so will the child who is learning. Jake says every single word aloud when he signs, and it has caused absolutely amazing jumps in his vocabulary, his understanding of what is said to him, his use and understanding of facial expressions, and his social skills. It has also almost eliminated transition tantrums and helps him tell us how he feels when he is sad or angry. In other words, Signing Time videos have been nothing short of an ongoing miracle in this house.

Want to hear some example stories??

Jake masters the signing time videos pretty quickly. I'd say within a few days he masters a whole episode. He has nine volumes, and just seems to have a massive signing vocabulary, inlcuding "feeling" words, animals, foods, letters and all of the colors. Its hard for me to keep up sometimes, but luckily each video has a handy signing review for parents at the end of each tape that goes over all of the signs learned in quick succession. That feature came in handy one day when Jake stood in the kitching saying "want red!" and making a sign I didn't know yet. He kept saying it "Want red!" and signing. I went to his room and checked out the signing review for the newest tape, and realized he was signing "Bread." He wanted some homemade bread that I had made that day! I don't think that Jake has a lot of issues with his actualy diction, just well, he's 3 and sometimes he's hard to understand.

Another example happened today at the zoo. Jake was already in break-down mode when we were about to leave because he'd gotten his hands in some thorny bushes, but when we got to the car it got even worse. He kept saying "ride car!" and I kept consoling him "We're going to go ride car soon, let me nurse the baby." etc. Jake usually cheers up instantly once the car is moving, but halfway home he was still sobbing and saying "Ride car!" and signing car. I just kept saying "yes! we're riding in the car darling. He would just cry harder. Finally I looked in the rearview mirror to see that he was touching his lips with his index finger before signing "car". It finally came to me! The index finger to the lips is the sign for "red." He was saying "RED car" not "Ride Car." Last Friday we traded my bright red Jeep in for a silver minivan. Jake wanted to ask about the red car. I explained to him that the red car had gone bye bye, we'd sold it, taken the money and bought the new big silver car. "Red car Bye bye, Jake." He stopped crying instantly. He just wanted to ask.

Can you imagine wanting to ask something so simple and not having the words to do it? Imagine an adult asking "Jessi, what happened to your red Jeep?" And I kept saying "We are riding in the car." Even an adult would get angry and frustrated, don't you think?

I feel that its so important to listen to our kids, and to speak to them with respect. I feel so fortunate that I have even a tiny bit of understanding as to why Jake breaks down the way he does. I try so hard to speak to him respectfully and not lose my temper. Every morning when I get up I tell myself that I can't yell or scream, or I won't have a good day. When I have lost my temper and yelled at Jake, I am rewarded with several hours of inconsoleable crying. Sometimes he gets frustrated and breaks down anyway, but no amount of yelling would make that better. I simply try to tell him that I am sorry he's frustrated, and that I am there for him. Its not important whether or not I'm embarrased because he's laying on the pavement in front of the entire mom's group. Those feelings aren't really as important right now as figuring out why Jake is losing it, or simply removing him from the situation so he can feel better.

It simply breaks my heart to see parents berating and belittling their children and speaking to them in ways that no person should speak to another. We have to understand that every word that we say to our kids has an impact on them that will last for the rest of their lives. I've recently witnessed a woman hitting her child for not walking with her, after I'd had a conversation with her where she told me that her child had social delays. Some of her wording was "He's just terrible, he's always being bad." and then she was smacking him for not following the sidewalk. I don't want to judge her for her ignorance, but I wonder what Jake would be like if I gave in to my own frustration and the occasional temptation to scream "Can't you just be normal!". Children deserve respect and dignity and need to be understood, not controlled. When you act in kind ways to your spouse or your friend, try extra hard to understand them, and work hard at the relationship, you get what you need for yourself out of the relationship. It works with children too :-)