Friday, March 27, 2009

Brian as Cat in the Hat

About a month ago, it was Read Across America week or something like that and the schools usually spend a week focusing on Dr. Seuss books. On this particular day, the kids made Cat in the Hat hats and Brian came home with painted whiskers and a tail. Yes, he had a tail that was stapled to his clothes. It was the cutest. His friend Ariel, who he calls his girlfriend was dressed as Fancy Nancy. Her mom said it was okay for me to post these pictures of her daughter. :) I'm so glad because they are just precious. :)
Brian as The Cat in The Hat

Ariel and Brian checking themselves out in the mirror!

Wednesday, March 25, 2009

Diets...the natural cure all?

Here I go again, looking and researching online trying to find something to "fix" my children's ailments. I had joined an online group a while ago when I was researching the GFCF diet for Brian. This online group has brought me much information and is a great place for me to ask other parent's questions about the diet or about autism. It's very helpful and has been a great guide for me. As I was strolling through the posts today, I saw one that was titled "Red Cheeks" and I became curious. I only looked because I know that when Ethan has an allergic reaction to anything, his cheeks glow red. His cheeks were red today and I think that was due from the allergy testing done on him yesterday. Anyways, I'm reading through this post and warning bells start to ring in my head. My eyes can't take the information in fast enough. I was reading symptoms which included red cheeks, diarrhea, hyperactivity, sleep problems, head banging, short tempered, etc. and thought, "WOW! I think this is Ethan!" Apparently, these are all symptoms of phenol sensitivity. I had no clue what phenol is and researched. Wow! Apparently it's in EVERYTHING we eat. Many children with autism has this sensitivity. I often wondered if Ethan had a slight bit of autism or something. Something about him just seems off to me. I did recently ask his pediatrician about the head banging and he told me that it was because he couldn't express in words his frustrations to me so to get attention he bangs his head. My best bet is to ignore it and it'll eventually go away when he doesn't get the attention, so the doctor said. Well, I had been ignoring it but it's still present. He still bangs his head. It's quite scary at times. Anyway, so I'm reading and I can't help but think to myself that wouldn't this be odd if I diagnose Ethan with having phenol sensitivity before a doctor. If I do, that's kind of sad but it is the parent's responsibility to keep up with the health of their children. So as I'm reading, I discover something called The Feingold Diet where they eliminate the chemicals and food colorings. I was very taken aback when I found out that the pretty red color in fruit punch and other drinks comes from petroleum...same stuff as what gas is made from. I also learned the D&C and number colorings you find on your foods means that they are chemicals added but are not safe for food. Hmmm. So that yellow #5 in that Mountain Dew you're drinking...not a good thing! There seems to be some added benefit to this Feingold diet for children with any of the 4-A's, autism, ADD, ADHD and I can't remember the other one at this moment. Anyways, all of the specialists working with Brian seem to think he's headed toward the ADD aspect so I'm thinking to help him with his attention, I should try this Feingold Diet. I would do it for both him and for Ethan. It's going to be so hard though. Everything we eat has phenol. Ethan's favorite foods are high in phenol which makes sense to why his bowels are not quite solid. He loves grapes, bananas, berries, fruit snacks, OJ....all have phenol. This is going to take some time to research but I truly hope that once I start it, it will really show tremendous improvement in both boys for different reasons. Brian, for focus and attention and Ethan for his allergies, asthma and hyperactivity. This could definitely explain his mischievousness. Can you imagine a well behaved Ethan if this diet works??!! I think I would love it and wouldn't mind all the research and work that I'd have to put into this diet. :) It would be well worth it. So if anyone has any info they'd like to share about this diet, I am open to suggestions. It looks like I will be heading to Borders for some books on "Why My Child Is Hyperactive" and something about curing/recovering the 4-A's. All this on top of school work. Aaaahhhhh.

Tuesday, March 24, 2009

Ethan has allergies

Today was a long day. Matt and I closed on our house...again...to get a lower payment and to take advantage of the low rates. Matt went to work early this morning only to drive his hour and a half commute back home to make the appointment and then back to work right after. Craaaazzzy! About an hour later, I picked up the kids from school and we headed to Ethan's appointment. Ethan was breast fed for about a year before I switched him to formula and since switching him, he has had trouble keeping it down. I remember going to the doctor for help and their suggestion was to try soy. After spending lots of money on soy formula and nothing working, they told me to try a different brand. When I asked for testing, they told me he was too young and that everything would come back positive and to just try to avoid the things that I thought he reacted to. Well, now that it's two years later, we finally got in to see an allergist here. When I told her this information, she looked at me and asked me if I was serious that they basically told me to figure it out on my own. I said yes. Well, they do say mom's know best and I'm glad I followed my instincts. When I told the allergist that I was not giving Ethan any milk, she asked if I gave him soy then instead. When I told her no, she looked at me in shock and asked me "what then are you giving him to supplement the milk." My feeling personally is that we don't need milk in our diets. The industry has done a great job advertising and making the public think that they need milk. With the American diet today, there's no way that we are lacking in any type of nutrient. We're not malnourished. And, I also think that my milk was good enough for him as a baby and if he needed milk now, then shouldn't I still be lactating? Anyway, I did notice when I tried switching to soy that Ethan would get a runny nose and red swatches on his face. So after a few weeks of taking the doctors advice on trying different brands, I decided to stop it all together. I was tired of spending money on expensive formulas only to get the same result from one time use and the rest of the can be wasted. The allergist was extremely shocked that I didn't give him anything. She then ran the 20 different tests. Turns out, Mamma knows best. Ethan not only is allergic to milk, but also to soy. He's got environmental allergins, especially in the fall, to things like mold, dust, ragweed and also furry critters like our dog Cody and hamster Kia. The allergist told me that we will need to replace his pillows and make sure we have allergen coverings on them as well as his bed. She then proceeded to tell me that she is prescribing 2 epi-pens that he will need with him at all times incase of accidental overdoses of these allergens. He'll be taking zyrtec and nasal saline rinses often. He's three. The nasal rinses are going to be fun!!! I just can't wait to get on that one. The best part of this entire visit was having all the kids with me. Not because they're well behaved or anything but Katheryn was able to hear the allergist talk about things in the house that could cause reactions in Ethan. She also said a sentence when discussing the epi-pen that if we use it, it'll buy Ethan time before EMS gets to him so he doesn't die. When Katheryn heard that and later asked me about it, I used it as a great teaching tool. I told her that she then needs to keep her room completely clean and free of dust so that there aren't as many dust mites to trigger Ethan's system. She looked at me odd when I said this and I proceeded to tell her that Ethan is allergic to dust and if her room isn't clean, then it could cause a reaction in him that we would need to call EMS. She gave Ethan a look but now that we are home, she is in her room cleaning it!!! I know, this may not have been the most honest thing to tell her but I'm pleased with the results thus far. She's cleaning!!!! As far as the pets go, it looks like a fish will be our safest bet. We are going to have to place an ad in the paper for our furry friends. This may not be a bad thing if we can find Cody a home but I know Brian will be devastated about his hamster Kia. I know it's bad to wish, but we've had the hamster a year now. When do they die??? lol. So now our two boys are each on a special diet. Ethan is CFSF (casein free/soy free) and Brian as most know is GFCF (Gluten free/Casein free). That's all for now. Until next time when Ethan prompts me to write again. :)

Wednesday, March 18, 2009

IEP meeting for Brian

We had Brian's IEP meeting with the school yesterday. It went okay. We've updated his goals for the remainder of the year and got some information to get his IEP updated once he starts kindergarten in the fall. I've been amazed with his results so far and the hint from his speech and language pathologist at school about possible ADD. Well, I guess I need to start believing that it is possible. After Brian's speech appointment this morning which is seperate from what he receives at school, I was wow'd. Is that a word?? LOL. His therapist this morning showed me test scores that she was able to complete and Brian showed great improvement. He is just a little below the mean but not far. He's made a huge jump. This is encouraging. She then proceeds to tell me that she thinks Brian gets distracted easily and isn't able to pay attention to all the details. She reads him a story and points at the pictures as she's reading and then asks Brian to retell the story pointing at the pictures. He can retell the story but he doesn't get the pictures placed right. She said he gets interested in other things and doesn't focus. Amazing I thought. The therapists are independent of each other and I'm getting the same information. It seems as though I will need to speed up the process and find out when and if our referral went through for the developmental pediatrician. I need to start researching ADD. I'm not big for medication...I don't want to cover the problem up. I want to figure it out and hopefully I'll be able to find a way to help him clear the fog. I've been reading a little and avoiding artificial coloring/flavorings may be next. We'll see.

Thursday, March 12, 2009

Brian's update

Wow, I've realized that I haven't blogged for quite some time. All these things are happening and I keep finding things to blog about today. It's catch up for me I guess. I should be studying but this is so much more fun. :) I am a bit confused and overwhelmed with different emotions right now. I'm not sure really what to think or how to feel. Brian has been doing Occupational Therapy (OT) and Speech Therapy (ST) since his diagnosis of autism. When we moved here to Maryland, it took us a while to get these services going again and we're thankful that he is back on track with these services. He is also receiving ST in school. A few weeks ago Brian's OT therapist informed me that she thinks Brian can be discharged in about 4-8 weeks. I was excited with the news at first because this meant that Brian was on target and doing great. Then I thought, what does this mean. What's going to happen when he transitions to Kindergarten. What if he still needs support? So Matt and I went on the internet and found fine motor skills that Brian should be able to do but isn't able to do just so we can keep him with the OT longer. I don't think he's ready to be discharged. Yesterday, we went to his OT and ST appointment. His ST therapist told me that Brian is making great progress and she sees discharging him pretty soon. WHAT?! Now she wants to discharge Brian?? I didn't understand. We've only been going to this office for about 2 months. How can they be looking at discharging Brian? I didn't understand. I'm so proud that he has made this progress but I'm reluctant to believe that he doesn't need these services anymore. Immediately after these appointments, the boys and I headed to Brian's school for an appointment that I had with one of Brian's teachers. To get ready for Brian to transition to Kindergarten, he had been re-evaluated and the teacher needed some input from me on things that Brian did or didn't do such as social interaction, competive play, etc. As I'm answering the questions, she tells me that she can't believe the difference in Brian from his first evaluation in NC. She couldn't believe that he was the same kid because what was reported from NC is totally opposite of what they were seeing now. She told me that Brian has made great progress and that he may not qualify for services next year. Again, WHAT?!! So she was hoping that with my input on this evaluation that it would be enough to keep the services available to him. Moments later, his ST teacher from school sits down beside me. She gives me Brian's latest evaluation that they just finished that week. She walks me through it and tells me that Brian's scores are average with his typical peers. He has had significant progress/gains within the past couple of months. Hmm. That's when I changed his diet to GFCF. Why can I not see the changes?! As she continues to tell me about Brian's scores, she points out the pragmatic area. She informed me that when she tests children with autism, they all bomb in this area. She really emphasized that she has not yet seen a child with autism score in this area...until Brian. Brian's score for being diagnosed with autism in the pragmatic area was high. The score is below average for typical kids but Brian wasn't too far away from scoring in that average range. Emotions filled me and I wanted to cry. I could feel my eyes start to swell but I was able to hold back. She then tells me that with Brian's scores, she thinks that maybe Brian is ADD and not autistic. She was questioning whether or not his diagnosis of autism was accurate. I told her that it is accurate, that he displayed all the signs of autism when he was younger. I was also suprised to hear her say ADD. About a month ago at the neurologist appointment, the neurologist drew a picture for me. She had ASD in the middle which is autism spectrum disorder. Then she drew other circles interconnecting with ASD and labeled these other circles ADD, ADHD, mental retardation. She said they all interlink...you could have a child who is autistic but that child can also possess other charecteristics that show ADD/ADHD, etc. She prescribed some tests for Brian to see exactly where the autism could be targeted to within his body system. She tested for Fragile X, urine OA, urine creatine/GAA ratio, karyotype and lead level. She is also trying to get the insurance to approve the genome DX analysis. Apparently this last one is tough to get approved. It's already been denied but she has written another letter to the insurance trying to get it approved. His next appointment is in June so that is when we will receive the results. Brian's next IEP meeting is the 17th. We'll be discussing Brian's transition to Kindergarten and his teachers will also be recommending limiting the services he is receiving. It's so scary to think about and I don't know what emotion I should be feeling. Is this one step closer to Brian possibly losing his diagnosis of autism? Or will his diagnosis be changed from autism to ADD? I'm just grasping the idea of autism and I have read so much on autism. I feel like I will need to start all over again now and learn about ADD. The ADD does make sense to me with Brian. I do see it when it comes to two step statements/questions asking him to complete two tasks within one statement. He does lose focus and isn't able to complete the task because he doesn't get all the information by the time the statement is completed. I can see it. I just don't know if ADD is a sign of Brian losing the characteristics of autism and if it is a sign of recovering. Is it better or is it worse to be diagnosed ADD? I want to say that it's better. Working with Brian for the past 3 years with numerous doctor appointments, therapies, IEP meetings, his diet, school.... I don't know what to think about all that they have told me. It's not that I don't want to believe that he has made these strides, I see how our efforts have aided him. Maybe I'm afraid of the unknown...of him not needing me anymore to help him through autism. I don't want to hold on to the autism, but I don't know anything other than autism when it comes to Brian. However, I do know this. I know that God has a plan and a purpose. He brought Brian to us for a reason and when he wants us to know that reason, we will know. Until then, we just keep our faith and trust in God.

One more time!

Yes, one more time! Ethan again. I don't get him. I don't understand. Yesterday he helped himself to a loaf of bread in the refrigerator and proceeded to shred the pieces all over the living room. He's not eating them. You would think with all these food mishaps that maybe he's not eating enough but he eats all the time and when he grabs the food from the pantry or fridge, he doesn't eat it. He destoys it and rubs it into the living room furniture. I don't get it. It's keeping me from studying and I'm second guessing whether or not this is a great time to be going back to school. Hmmm. Here's another one a few days later. I thought I would just add this onto this one. I never seem to catch a break. Here he is with some popcorn. He took an icy out of the freezer and melted it onto the popcorn on the coffee table. Brian was watching and never said a word. Nice.

Ethan catching up

Here we go again. It's Monday after the peanut butter incident. All was going well. I started to study since Ethan was content watching Noggin. After reviewing on CD, I went to check on Ethan. OH NO!!! Ethan decided to have himself some fun. He went into the freezer, climbed up the shelves and got Brian's soy ice-cream. He somehow gotten the waste basket from the office and stood it upside down on the floor in the living room. He took the ice cream and dumped it on top. When I came out, all I saw was ice cream dripping from the trash can onto the just recently shampooed carpet. The empty ice cream container was on the coffee table and Ethan was laying on the floor watching Noggin with his pants off. His pants and pull up were laying to the side. I don't know. I don't understand what I did to deserve all this cleaning. I immediately called my parents to see if they were interested in adopting Ethan before I went to an agency. Melting ice-cream on top of an upside down waste basket I don't know why he took his bottoms off.

Ethan was overdue!

I'm innocent, I don't know what she's talking about. Greetings my dear friends and family who continually check up on our famiy through this site. I believe that calling this blog site "The Misadventures of our Family" is inaappropriate. It should be called the "Misadventures of Ethan." For being three and quite small, he sure does make himself a heck of an attraction in our home. I can now blog about this next event since I have had time to let the steam cool off. Some of you may have noticed that you hadn't seen too much on here lately about Ethan. He's been really good but I guess he was due for some mishaps. So, here we go! This past Friday was going well. Ethan was great at his doctor appointment and well behaved. Interesting I thought. Little did I know that his great behavior was about to take a turn into doom. We got home and I got him and Brian settled with lunch and a movie while I took that time to go into the office and study for an exam coming up. All is well. Katheryn came home from school and started working on homework in her room and I asked her to get me at 3:00 so we could head over to the school bookstore so I could pick up a CD that I needed. I continue studying and as I'm fine tuning my notes, I hear Brian ask Ethan what he was doing with peanut butter. I didn't think much of it at that second and about a minute later I heard another voice telling me that I better check things out. It's 10 minutes til 3pm, a great time to get the kids together and ready to go because the book store closed at 4pm. As I emerge from the office and walk to the kitchen, I smell the distinct smell of peanut butter. As I get closer to the living room, I see a mess and Brian clearly tells me that "Ethan did it!" I was speechless. I looked at Ethan and he was covered head to toe with peanut butter!! Not just a little, he was coated! Then I notice the 6 lb tub of peanut butter on the table with a bowl beside it and on the floor, an empty box of graham cracker crumbs that you would use to make the crust of cheesecake with. I was astounded!! Peanut butter and graham cracker crumbs had been massaged into the couch and carpet. The wall behind the couch had splatters of peanut butter. There was a blanket pulled out with more peanut butter and graham cracker crumbs rubbed in. The kitchen floor, the pantry, the television and even my poinsetta had peanut butter tossed on them. I yelled for Katheryn to help Brian put his shoes on while I took Ethan upstairs for a quick bath. Once I got him cleaned up, I immediately began to work on cleaning up the couch. Once the peanut butter was removed from the couch, I needed to get out the door to get the CD before the bookstore closed. Thankfully I made it with 10 minutes to spare. The weather was beautiful so once we got home, I sent the kids to the backyard to play. They were very happy to be outside and I was extremely thankful for the nice weather. This allowed me to clean up the mess without the kids being in the same room. I started to clean at 4:15pm. The peanut butter I had wiped from the couch left a white chalky residue so I had to wipe the couch down again. Thank goodness it is a leather couch. If it were fabric, I think I would have been much more furious. Ethan then came in for a drink. He got his drink and decided that he didn't like it and proceeded to dump it on the kitchen floor. I didn't know he had done this until I went to get the steam cleaner and stepped in his water on the floor. I cleaned that up and got to work with the steam cleaner on the carpet. Matt called to let me know that he was going to be able to be home early for once. Any other time I think I would have been ecstatic but I was just not thrilled with this news. He got home around 6:30pm and I was still shampooing the carpet. I had just shampooed the carpet a week earlier so having to repeat this process was just not fun. I hadn't started dinner yet either. Matt went to greet the kids outside and when he came in, he told me that Katheryn warned him not to go inside. She told him that I was really really mad. Matt then took the initiative and ordered pizza for the kids since he realized that I wasn't even going to attempt to make dinner. I finally finished cleaning the mess around 7:30pm. I sat down in the dining room to relax. Matt was getting ready to pick up the pizza when Brian came running into the house from outside. He was squeezing himself and hopping up and down frantically. He stops and asks me if he can go potty. He asks everytime which I don't know why. So I told him ofcourse, go!! Then he says, "oops!" and I watched his pants start to soak. I looked at Matt and I dropped my head onto the table with a bang. Without hesitation, Matt picks up the phone and calls the pizza place and asks if they can deliver it. He then cleaned up Brian's mess and gave him a bath. When all was done, the pizza finally made it. Matt had instructed Brian to get dressed and I guess he didn't. When the pizza came, Brian went outside, fully nude, to help Matt get the pizza. I heard Matt tell Brian to get inside. I was so thankful when that day was over. I didn't get any studying done but we sure got a head start on our spring cleaning. Ethan caught! Sticky hands and all! The couch had a massage Cute as could be but still in trouble His clothes were a mess Having a grand ole time

Thursday, March 5, 2009

The Cat's Meow

Strange things are going on with Brian in the animal kingdom. Elephants eating meals and now his obsession with cats. The other night he had made two triangles and cut them out of paper and colored them. He told Matt and I they were his perfect cat ears and that he wanted to wear them and be a cat. Hmmm. Odd, but okay. So I went through my hair items and found a stretchy headband used to hold hair back as you wash your face. Matt took the headband and stapled Brian's cat ears onto it. Brian put those cat ears on proudly and immediately went upstairs to show his hamster, Kia. He got up to his cage and said, "meow." Then he crawled into bed and watched Kia as he fell asleep. I think this was the first night he actually went to sleep on his own in his own bed. I think he's been watching too many episodes of Tom and Jerry. I will get a picture of Brian and his cat ears on here soon. It's become a ritual for him every night though to make new cat ears and fall asleep with them. Matt and I are not complaining as long as he goes to bed in his own bed. :)

The Elephant is coming!

A rare occasion, Matt left work early last night and was able to get home by 7:30pm. While he was commuting home, Ethan and I were making dinner. Ethan was so eager to help me. He pulled the dining chair to the counter and hopped up and handed me potatoes as I peeled them. Then as I diced them, he threw them into the pot. When it came time for the chicken, he wanted to help me batter and fry them. He was sooo cute. By the time Matt made it home, dinner was ready and we were able to sit down to a meal as a family for once. It was quite nice. Ethan gobbled his chicken and corn up immediately and decided to use the mashed potatoes for finger painting. Brian complained and said he thought he needed to throw his food into the trash and have a piece of toast with peanut butter on it instead. Brian's diet is GFCF and it's so hard to find something that we can all eat together and that he will like. His diet basically consists of toast, pizza, pretzels and chocolate chip pancakes. That's all he will allow his palate to enjoy. So last night, I made sure that I cooked everything GFCF. The chicken I coated with rice flour and potato starch, the mashed potatoes were made with rice milk and earth balance butter and the corn was seasoned with some sea salt. It was not appealing to Brian. After trying to get him to taste just one bite, finally, I told him I heard an elephant coming and if he didn't eat it, the elephant was going to clean his plate. He's really frightened of an elephant eating his food. He got protective over his plate. I told him just to try a bite. He did and his face let go of the animosity it had. I asked if he liked it and he said yes. I told him I think I heard the elephant leaving. He continued to eat his chicken. I discovered his fear of the elephant eating his food when we were in the Bahamas. I had made him a hot dog to take to the restaraunt for him and when he wouldn't eat it, he asked if the elephant would eat it. When I told him yes, the next second the entire hotdog was in his mouth! Matt was quite impressed with my ability to reference an elephant so he thought he would try it to get Brian to get dressed into his pj's for bed. Brian wouldn't change. I told Matt not to abuse the elephant and the elephant is to only be used at meal times to get Brian to expand his diet to things other than bread. :)