1 year later – a little late October 15, 2010

Thursday night and I am tired. I didn’t disappear I’ve just been getting into the groove of the school year. Thanks so much for following me, it looks like I still have some die hard blog followers.

On October 1st of last year (2009) I bravely took my journal out of hiding and started keeping track of P’s words. P was 3 years 4 months old when he finally started talking. One month later I stopped journaling because I was not able to keep up. Today I am still not able to keep up with documenting his progress. Yeah P!

P is a big old boss. He can boss me around any day of the week. He likes to tell me when to sit, where to sit, when to stand, where to stand, demands a particular snack (and only that one will suffice), what show he will watch, and if he will even direct me saying “that way” to his favorite store, Target. Oh yes he gets his sense of directions from his momma, so he knows exactly where to go.

And the reality check is that there is still so far to go. I am little embarrased to say but I applied for a handicap placard for P. Our pediatrician thought it was great idea. As I have said I can’t physically handle P anymore. He is more than half my size as a 4 year old and weighs about 53 pounds. He refuses to hold my hand and will rush into traffic if I am not on top of him. The other day I was scared I would have to enlist a store employee to help me get him out of a store. I use to nastily stare at the parents who had their children on leashes. Boy do I now wish I could find one for P that would fit him. I have a game plan for each and every store I may have to enter with P. This usually means I have to enter a P perferred store before I can even go grocery shopping. I have had store clerks yell at me for keeping him in the big part of the cart and random passerby’s telling me P is too big to be in a stroller.  Recently an ignorant teenager said  ”put him on a leash” as I held P sideways facing away from me kicking and screaming so he wouldn’t hit me, he had already punched and hit his dad knocking his glasses off his face.  The teenager was very lucky I was holding P.  Although I would love to see them handle him even if he wasn’t tantruming and gave the group of teenagers the I want to kill you stare. I can only focus on educating people on what P’s disability means. His disability is not going away we just have to adapt and be flexible to his needs.

To get me to the next day I only think of the good.  P has surpassed the normal skill level expected for so many children diagnosed with Autism. I want to give a big fat tongue stick out to the nuerologists who gave us no hope.  And hope to stroll into his office one day and have him undiagnose P.  I have so many firsts to look forward to this year.  I am a little over 2 weeks away from hearing him say “trick or treat” for the first time.  More importantly everyone else will hear him say it too.

1 year later October 1, 2010

after diet & biomedical

before diet & biomedical intervention

Wow, a picture really is worth a thousand words.

3 weeks till Summer is over August 10, 2010

It’s been a long while and I am sure everyone was eagerly awaiting my next post. A lot of stuff has been going on and I don’t know where to begin. Let’s see…. So I went and took the 4 hour round trip drive to the DAN Dr. He say’s we are still in the adding phase so we are adding in 2 more supplements to help with calming and work with the B12 shots to aid in more language development. We are up to 12 supplements a day and some taken 2 or 3 times a day. We have had to start getting more creative in getting them in P. With the P’s language he now likes to sit and watch us get all the supplements ready. We tell him it makes him better and he is much more willing to take them now and repeats “makes me better”.

Only 2 more days of summer school and I can’t wait to get him out of school. All the teachers and aides are sweet and friendly but they don’t seem to care like the regular school year teachers do. The incident where they sent home popcorn with butter that they had given P without my permission was enough. Not only are his diet restrictions on his IEP but I took the time and wrote the summer program a separate note about his diet restrictions. It is a very serious error in judgement, lack of concern and a safety risk what they did. I and they were lucky that P has no allergic reactions where it would land him in the ER. If it was it would have been all over the news. The foods I don’t give him make he sick to his stomach for a few days if not weeks and affect his behavior. I now have to contact the district SPED director and report the school. I also will be contacting our state SPED watch agency and reporting the school. It may not do much but it will make local parents more aware of how vigilant they have to be in monitoring their children’s care. P does not have a true allergy to any foods but it doesn’t dismiss the severity of what they did. On a side not P’s DAN Dr. thinks we may never be able to add gluten back in his diet.

What else? Oh, P has been chatting up a storm. He now tells me “no nap” if I tell him nap time, and he really means it. He now points and tell me “look” wait for mom’s response “look, clouds”. “No please” because he doesn’t want to go home. “I saw a penguin” to the eagle statue in front of the library. “Auntie” once we pass auntie’s exit on the highway, “Go see Auntie”, “I want go see Auntie” because we were not turning around to go to her house. And so much more.

The big news for this week is we finally got an appointment with one of the top Gastrointestinal Dr’s in the country, after 1 year on the waiting list. He is 1 of 2 Dr’s in the country that are familiar with children on the spectrum and the GI issues they face. He has published studies on his findings and we are so lucky to be able to go see him. I can’t wait to go see him in November.

Next week P’s 4 yr physical and I am hoping that all goes well when I tell the pediatrician our plans for immunizing this time around. I think it should, that’s why we chose her.

3 weeks in July 8, 2010

This has been a long long long long long long long etc. 3 weeks. I have gone a size up in my daily coffee intake and am proud of it.

What me and the Pman have done so far; 2 trips to the zoo, 2 different farms, the aquarium, the children’s museum, indoor playground, many parks, gran’s house, tryout for gymnastics, and I’m drawing a blank on the rest. I have only so much memory. We have been busy and honestly I am impressed. My guys behaviors have far exceeded my expectations. In one of our trips to the zoo I forget the cash, P wanted to ride the train for the first time ever, ATM was broken and mom lost. So trip #2 mom was trying to get on P’s good side. I am pretty sure he was still holding it against me. So P had 3 rides on the train and couldn’t have been happier. We had unexpected things come up and he handled them all so well.

I was terrrified about every other parents talk of regressions but my guy has been making strides every day. I am a big soppy mess of emotion with how in reality it has turned out. Today he decided his new sentences were gonna be “Once upon a time. In a land far far away.” Really I owe the movie companies thousands of dollars in speech therapy bills.

And yesterday was his first day of summer school. After a week of my non stop calls and thinly veiled threats to every person in authority in the district, I still had no idea who his teacher was and what I needed to bring for his first day. I walked him in and he turned into spider monkey. I could not shake him. Yes he can over-power me. Finally when I was able to unclench him from me he was hyperventilating and sobbing. I had to rush through 2 sets of glass double doors to escape. P tried to crawl after me sobbing. I got stuck in between the doors because of the vacuum effect. But somehow he regrouped, recovered and got 2 excellent reports from his teacher.

I am a parent braced for the worst, in survival mode. I for the first time, out on my own with my son, was able to enjoy our trips. By any means it wasn’t easy. But I was able to focus and capture the moments of joy in my memory forever. A joy as a parent I have never been able to experience.

mommy summer school June 7, 2010

This summer we will be taking our first vacation with P. I am so excited. Of course we had to get a house so that I will be able to cook all of P’s foods and it is more convenient for all. But we will be able to enjoy an entire week on the beach.

First comes the rest of the summer, sigh. I have no idea what to do and am scrambling for last-minute ideas. I had been so busy worrying about other things I forgot I had to plan for the summer. At least P was accepted into the 6 week summer program. But it is only 4 days a week and only 3 hours a day. And then there are 4 other weeks where I have nothing planned. Some kids enjoy the break. For P the change in routine is stressful. Three months of the unknown, changing to another new school, and so much free time is daunting to me and could be a recipe for disaster in terms of P’s behavior.

Others children can go to camps or at least at his age be signed up for activities that parents can leave their children. Not P. I can’t send him off to a NT (nuero-typical) child’s camp or activity. They don’t have the support he needs. And these camps/activities now list on their sites that they don’t have aides for special needs children. It’s like P is banished from some of the fun other children are able to participate in. I have to plan for more therapy like activities or social skills playgroups. And can’t have so much unplanned time during the days.  I have about a week in a half to pull it all together.  I am coming up with a large list of activities to do with him throughout the day including lots of “field trips” for us.  I also am trying to structure time spent at home more.  A picture schedule to map out our days, organized play time to work on skills and just more of everything that he has been doing at school. 

I am still learning and forgot about the accommodations I have to plan for as he gets older. Last year I allowed him to attend a typical preschool. This year I am not able to do that, he would require too much attention from the teachers. I have to make sure he does not lose the skills he has learned over the school year. The summer is not a break for him. He has to work just as hard at my summer school. Hopefully I can plan some fun educational stuff so it seems like a break to him.

last night’s trip to the ER June 4, 2010

Everything’s ok, everything is fine. The injury is a mystery and required a trip to the ER. We believe P injured his right foot, our educated guess. He fell off his chair (like he does everyday) on Sunday. But he got up limping. Nothing major just a little limp. He had it all week but there was no swelling, no bumps, no bruises, nothing turned funny, no sign of anything wrong other then P limping. We figured it would go away on its own. But yesterday he slide across the floor and reaggravated the mysterious injury. This time he got up hopping and barely wanting to put any weight on his foot. He was walking on his toes. So the problem is P has a high threshold for pain (common with the diagnosis). He didn’t cry from any of the falls and didn’t even wince when he tried to poke and prod him to find out where he was hurt. So we have no gage on how serious he is or isn’t injured. We called our pediatrician and they told us to bring him to the ER for x-rays.

We rushed to the ER, as fast as you can rush with P. I had to pack his portable DVD, books, food, blankie etc. I am always prepared. It was just the nearby tiny town hospital so they close at 8, thus the rush. We got there and 7:30. The intake nurse was very friendly and said we had to get registered. I forget everything I need to tell the nurses since we thankfully haven’t been to the ER in 3 years. But she started asking P the questions. So we then had to explain that he can’t answer questions. I assumed and it looked like she made a note of his diagnosis.

We got registered and finally saw the dr. at 9pm. In the meantime the nurses and staff were complaining about the time and they still had people to see. No big deal because they were all still very friendly and kept saying how “handsome” P was (sorry had to get that in). The dr. came in looking disheveled and tired. We explained the injury and then he proceeded to ask P the questions. We told the dr. he couldn’t answer and probably couldn’t follow his directions. The smart dr. decided it was a good idea to keep talking to P asking him to follow directions and where did it hurt, again and again. We keep saying “no” he doesn’t know what you are asking. The jerk would not listen to us and told us nothing was wrong. So the 5th time we explained the whole situation (even after he saw how much he was limping and not he didn’t want to jump) he begrudgingly agreed to do the x-ray and was grumping under his breath about the time. Now at this point I was pretty annoyed. He was giving us an attitude and not accepting the fact that would couldn’t determine the extent of P’s injury because of his diagnosis. Now I know a 4 yr old can’t explain it to you but at least that can say “ouch” or maybe point to vicinity where it hurts. We are flying blind here. Yes we are a little crazy and overprotective too. But honestly what am I suppose to do when he is hoping on one foot?

We got the x-ray after the technician put her hand up halting me “mom can’t come in”. She was nice inside the room because it turns out she had a nephew with autism. The results came right back. The dr. told us, in I told you so tone, that everything was fine. And we got home around 10:30, finally. Another adventure with P. At least P’s dad didn’t yell at the dr., ok me too. He was stewing the longer we were there about how rude he was to us. The get well plan “don’t run around to much”, ha ha that was funny. P was hop running in the ER room and attempting to play with all the machines. P is still hobbling around today happy as a clam.