10 on Tuesday

1. I am sick and tired of the scheduling dept with the real estate agency we have our home listed through. The schedulings are all screwed up and the realtors cancel without notice. So that means that we drive around aimlessly for no apparent reason. Not to mention how stressed I get trying to clean a house with a 2 yr old who tears it up in seconds.
2. Because of number 1, we are looking for a new real estate agency. It's nothing against our realtor b/c she's wonderful, but the issues we are having with showings is insane.
3. Jayden has been putting two words together very nicely lately. He says "Hi Mommy (Daddy, Nana, Paw Paw)", "Come in", "Where Mommy?", "Let's go." and he surprises us everyday with new things.
4. Today the fed ex man delivered a package and rang the doorbell to let me know it was there and he left. Jayden ran to the door and said "COME IN!!" and then opened the door.
5. Thank God for our alarm b/c otherwise I wouldn't have known that he could open the door. We must now use the top lock at all times.
6. Only 4 more weeks until Disney World!!
7. Jayden's social evaluation is scheduled for Monday. Please pray that all goes well and he gets the help that he needs.
8. Early Intervention is supposed to continue his therapy this week. We shall see about that but I'm not holding my breath.
9. My aunt is going to bake a mock gluten free birthday cake for Jayden this weekend. Angel foods cake with an almond glaze. Our hope is that the cake is good enough that we can serve it to everyone at the party and not make him have to be singled out with a different cake.
10. It is HOT!!!

Angry...

There were several things that happened today that made me angry:(1) The fact that my dogs' vet of 4 yrs (FOUR YEARS!!!) cares more about making a daily deposit than seeing and treating my dogs infected neck. We found a new vet today. (2) The fact that I am STILL fighting with the crappy state of MS to get Jayden back in Early Intervention. A complaint was filed today with the Dept of Health b/c EI is not returning calls. (3) The fact that we were given an hour notice for a realtor to show our house this evening at 4:15 and I ran around like a chicken with it's head cut off to mop the floor and make sure everything was PERFECT for a showing, then grabbed my napping child from his bed and my 2 dogs (1 with a cone head for now!) and my loud mouth bird and drove them around in 100 DEGREE weather for an hour, only to call the agency at 5:30 and find out that the showing was cancelled. (4) It was 100 degrees today.

But there was one thing that stood out today. I was surprised that it made me so angry. We got his blood test results back today from the celiac panel. Positive. I know, DUH, right?? Well yeah, in a way. One thing I have to admit is that I do know that children with PDD often have GI issues and have an intolerance to wheat. So the fact that his pictures from the scope showed damage left me wondering if it was truly CD, or just the "gut" issue common in ASD. Either way, it would be a lifelong dietary change for Jayden, but subconciously, I guess I didn't completely accept the diagnosis last week. Well the blood test confirmed it today. And he was born with celiac disease. That's what makes me angry!! He's had GI issues since birth and I've been bringing him to see the GI dr since he was 5 months old. The GI docs at UMC made me feel like I was just a paranoid, first time mom. "Oh, he's just a happy spitter." "All babies go through this, he will outgrow it." "It's probably HIS normal to only have a BM 1-2 times a week." "He doesn't look like he's in pain." And once the rude Dr told Jayden "Okay buddy, I have to go tend to the TRULY sick kids!" So b/c he didn't believe that my baby was truly sick enough, he ignored what I was saying and did not do even the basic tests to rule out my suspicions. So I followed his WRONG advice for 2 yrs, further tearing up my baby's stomach. When Jayden stopped eating... "Oh all toddlers go through the picky eating stage." But I stressed that it was more than picky eating. Again, pushed aside as a paranoid, first time mom. There was a period of time where Jayden wouldn't eat anything other than bread. It was like he craved bread ALL.THE.TIME. Yeah, that screamed celiac.

"Studies have found that opiates found in gluten and casein are released when they are improperly digested. When the GI tract is not in good condition, such as from celiac disease, these opiates get released into the bloodstream. The opiates not only impair brain function but also cause craving for foods containing gluten and casein, which increase the problem."~taken from www.celiaccentral.org

Even to this day, he does not want GF bread, but he will literally climb the table and go into rage to get to regular bread. Even after the ridiculous Drs did the scope, they still couldn't tell that my child had celiac disease!! Even after I told them I suspected it several times!! I JUST DON'T GET IT! Sometimes Drs have to put the book aside and listen to the parents. Parents are with their children 24/7. Drs only see these kids a few times a month (or year) and only a few minutes at a time. It only makes sense that the parents are your best source for information, SO LISTEN TO THEM! I am so angry that I want to write a letter to the so called Drs at UMC who denied my baby the testing and procedures needed to properly diagnose him sooner. I want them to know that by ignoring my concerns they left my child undiagnosed for over 2 yrs and it is b/c of them that he has been suffering for so long. That we have been suffering for so long. It makes my blood boil. But what hurts the most is that there is research that proves that children with untreated celiac disease usually end up with a diagnosis of autism. Wow. Now I won't know if that is the case, unless Jayden's genetic testing for autism come back positive. Then I know that he was possibly born with autism. But for now I'm just so angry. I cannot wait to get out of this AWFUL state. And since the real estate agency we are currently listed through is making that hard, then we will be looking for a new agency this week as well!! UGH. I just keep reminding myself that God chose me to handle this situation for a reason, and I'm going to get through this. I know I will.

Learning colors using ABA therapy

The goal here was to have him to sit and follow directions and receive positive reinforcement in the form of his favorite snack. My job is to help direct him (pointing to what I want from him when he's frustrated) and to ignore wrong answers and negative behaviors. This video shows the second attempt. The first attempt was disastrous for the both of us but towards the end we both got better so I wanted to get him on tape. Notice how he actually could identify some colors towards the end. I promise you he could not do this before the session!! He's so smart!

Celiac Disease

My poor, poor boy just seems like he cannot catch a break!! Honestly though, I've been suspecting this since late last year. I even started him on the Gluten Free diet myself in January, only I was never as strict as I could have been with it. I mentioned Celiac Disease to his GI dr at UMC, whom I would like to call Dr. WhoCaresWhatYouThink (Dr.Wcwyt), she told me that she doubts if it's Celiac b/c it doesn't present itself with chronic constipation, only with diarrhea. Mind you, Jayden had so many other symptoms including irritability, stomach pains, foul smelling stools, and gas. I even mentioned to her that he had been on a gluten free diet for about 2 weeks prior to the appt and that I noticed a significant change in the frequency and the smell of his BMs. She still didn't think that we were dealing with Celiac, but wanted to do a GI scope to rule out a stomach infection. So he had the scope done in February. She immediately told us about the stomach ulcers and said that she would call us with the results to the biopsy to see if he has an infection. She never called. I had to call the nurse 2 weeks later and she put me on hold and said, "The biopsy came back fine and he just has duodenitis (inflammation of the small intestine), so just continue with the prevacid 15 mg and follow up in 6 weeks." That was the point where I decided we needed a new GI and a 2nd opinion b/c I need to know WHY my 2 yr old has ulcers and inflammation in his small intestine.

So now we are seeing Dr. Awesome over at Baptist GI Associates. After the appt in April, she wanted us to follow up with her once she was able to retrieve the records from Dr.Wcwyt and see if she can get enough info from the pictures and the notes from the procedure in Feb, hoping that he will not have to have another one done. Well we went in this morning and first she asked me about the stool softner. For Jayden 1 capful (the normal dosage) is WAY too much. It causes him to have diarrhea all day and all over. A half of the capful was not much better, explosive. So really all I could give him is like 1/4 of a capful and that loosened his bowel movements but he still only goes maybe 3 times a week. So she said that is telling her that he is not just constipated alone b/c if that was the case then the 1 capful would be what he needs. So his constipation is a symptom of an underlying condition and it won't be fixed without first fixing the underlying condition. Then she said "So the Drs at UMC told you that the only reason why they thought he doesn't have celiac is b/c of the constipation?" I told her yes, and she said "Oh he has celiac disease." She reviewed the pictures and the notes from the EGD and she said it would be senseless for her to put him under to do another EGD herself b/c everything that she looks for when trying to confirm a celiac diagnosis was right there in the pictures and the notes. She said that his small intestine was very inflamed and his villi are damaged. She said instead of them looking like straight fingers, they are shrinking and looking like little balls. She also told me other significant findings from the pictures and the notes and just cannot understand why there wasn't a concern by the other Drs at UMC. She ordered the celiac bloodwork for Jayden today but she said she won't be surprised if it comes back negative. It's usually not accurate in children his age, but it may show some antibodies due to the fact that he's been eating regular bread all this week and that seems to upset his stomach more than any other non GF food. However, she said that the EGD is basically the picture of a celiac GI system and he needs to be on a 100% completely gluten free diet starting today (He had his bloodwork done this morning).

100%. Wow. That's going to be hard. Have yall seen how cute my little boy is?? He has the most beautiful eyes and those long eyelashes!! And he knows how to use them to get what he wants...



Man, I feel sorry for MYSELF!!!

Perspective

Lately we've realized that certain things that are usually simple in the lives of parents with toddlers, aren't as simple in ours. Yet we fall into routine and rool with the punches. Take breakfast for instance...He can't just wake up and say I'm hungry let's eat. No, because he has to take his prevacid on an empty stomach and cannot eat or drink anything for 20 minutes. Since breakfast is the ONLY time he asks to eat it was rough at first trying to distract him, but now our routine is a knock on his bedroom door (he is always camped out right by the door with his pillow and blanket!), and he says "Ah-men!" which I assume means come in but my husband thinks it means open! lol. I open it, he grabs Wayne, and as he walks out of his room I stick the prevacid in his mouth. He sucks on it like a big boy and then we sit on the couch for 20 minutes. He doesn't even ask immediately to eat anymore b/c he knows the routine. Now breakfast starts and it doesn't get any easier. First off, he can't just have milk in a regular sippy. Instead he has to have rice milk. The rice milk has to be served slightly warm and in a soft spouted sippy (sensory stuff). Then I have to add infant rice cereal to it for added calories since he still isn't eating(still can't believe that Drs kept telling me this was a phase...). Then for breakfast he will eat some dry cereal, b/c he can't tolerate cereal and milk together, not unless you want it to come right back up! Breakfast is done, time for lunch. Lunch is always either a turkey dog or sweet potatoe fries. Nothing special there. But his juice, we can't just pour his some juice and say "here ya go". We have to measure his juice to be 8 oz and add stool softner to it. The stool softner is tasteless, but if it isn't mixed in well Jayden won't drink it so we have to mix it until it completely dissolves. So it takes us 5 minutes to make him juice, something that usually only takes a good 15 seconds! I won't even get into how we have to accomodate his food allergies on vacation!!

Mother Warrior

Jenny McCarthy says that a mother warrior is "a mother who, instead of mourning, breaks down walls, weaves her way through obstacles, and never gives up, even when she keeps hitting dead ends."

Today I am feeling like a mother warrior. Our insurance is not the only problem we are having with getting Jayden the services he needs. The main problem is our location. Why would it be so easy to use Tricare insurance in Louisiana, and get services paid for, yet it's useless in MS. This morning Jayden and I went to the National Guard base to apply for the ECHO program, a program that helps families in the military who have children with special needs. The cath is that it is only provided for active duty military. My husband is active duty, but that's not a common find out here in Jackson. Seriously when people see my husband in uniform and find out that he's active, you better believe that they will carry an hour long conversation about where he's been and how long he will stay in. And it's so funny b/c their eyes go straight to his medals, and he has several of them! But anyway, I wasn't surprised when I went to the desk to update DEERS and when I mentioned the ECHO program the guy had no idea what I was talking about. He walked me over to the medical office and the Colonel was able to help me. But since there are so few active duty families here in Jackson, there were only 3 cases in the system for families who have ever tried to apply for ECHO here, so he was lost as well. After lots of phone calls that got him nowhere, he turned to his computer and searched for information. From what he found he believes that the ECHO program won't pay for services here in Jackson b/c there are no providers here that meet their standards. I can understand that, as I surely wouldn't want to pay $2,500 a month to someone who is not doing the job I expect them to do. However, services are covered along the gulfcoast, including Biloxi and New Orleans. Hmmm, we are just in a bad place right now. So he gave me a number to call the case coordinator over the ECHO program and find out what she suggests. If I have to use my parents' address then I will. I left a message this morning and haven't rec'd a call back from her yet. Don't think that I'm simply going to wait on that phone call though. Not this warrior!!

I had to go down to the vital stats office to get a certified copy of Jayden's birth certificate in order to apply for the Medicaid for the child with disabilities. It is located in the Dept of Health building. Early Intervention is run by the Dept of Health so I knew they had to be in that building or nearby. So I'm sure you know what I did! I had the receptionist to call the office and give me permission to come up and they did. I went up and I told them the situation, that Jayden's Dr wants him back in therapy asap and since he is 2.5 yrs old, Early Intervention should be giving him the services he needs. She never once mentioned that they ran out of funds. And since everyone who hears this story cannot believe their ears, I'm starting to think that something is just not right with their BS story of no funds. If that was the case, the lady in that office would have said that. Instead, she emailed our coordinator and told her that the Dr needs him back in therapy asap. She gave me the coordinators number and told me that if I don't hear from her this week to call that number. Lack of funds...whatever.

Yesterday, a very kind lady gave me the contact number to MS PTI (MS Parent training and information center) to see if they could be of assistance. They were very polite and when I called, the woman on the phone already knew who I was and what problem we are having. She gave me contact information for the parent educator in my area and says that they should be able to help us out, so I will be calling her shortly to see where that leads me. I'm thankful that we have a plan to get out of here, and I admire all of the parents who have to raise special needs children here (although you may not be in my shoes since you don't have tricare insurance). However, we are stuck here during the most crucial period of his development, where intervention is needed and I will fight until he gets it. I will certainly leave my mark here in Jackson, MS!!

ABA, SLP, OT, IEP

So our lives have suddenly been filled with numerous abbreviations. Those letters are very important for Jayden's future at this point. Without them, he will probably continue to have a hard time with day to day situations and an even harder time when he starts school. ABA is applied behavioral therapy, where an SLP will work on his speech, and OT will work on his sensory issues, and a behavioral therapist will work on his behavioral problems and social anxiety. Without the proper use of speech, Jayden will not be able to effective communicate with his peers. If no one helps him with his sensory issues he will forever be subjected to a world where he thinks everything is repulsive, including rice, cold floors, food on his face, etc. He cannot tolerate it one bit. And the behavior. If it is not addressed, I hate to imagine what type teenager he will grow up to be. So knowing that you would think that the services would be covered under health insurance wouldn't you? We have documentation from Early Intervention, pediatrician, and the developmental pediatrician that he needs this, yet it's so hard to get. ABA therapy will cost us $640 a month for 20 hours a week of intensive therapy. Pretty soon we'll be adding a new abbreviation to our lives...NSF!!! LOL. Hopefully we will find another option without having to pay out of pocket. I know God is good all the time so it will work out.

Update to the 1st developmental pediatrician appt

Well as you know, this first appt was just for Mike and I. J stayed home with my mom. They had a blast, but almost ended up having lunch in her car b/c she couldn't figure out how to get him out of his car seat!! She figured it out though ;) We arrived at the appt 30 minutes early and filled out developmental paperwork on J that took well over an hour!! And I like to think that I went through the forms quickly. On the back of one of the forms, there was a list of about 250 words and we had to circle the words that J could say. We circled over 60 words for him, which is seriously a HUGE leap from where he was at only 10 words in November. He's certainly delayed, but he's getting better which is good and reassuring for us. The Dr ran a little behind, but once she got to us, she took her time with the interview and we didn't feel rushed at all. I had a developmental outline that I put together for this appt once we noticed that J had some issues going on. She was VERY thankful for that and used it as an outline for the interview. We went down the list and everything that concerned her (which was just about the entire 3 page list!) she made a note of it and asked questions if she had any. She asked about some of his actions and behaviors and sometimes we'd tell her something that we just KNEW were concerning behaviors (like always lining up his toys) and she would tell us "Not necessarily concerning.." and then we'd tell her things that we thought were cute (like how he gets so "excited" when company comes over that he starts running in circles) and she'd say, "Oh, not good!" I love that she is so honest b/c I really want someone to tell us straight up what's wrong. I had my big girl panties on. So we went through his entire development and her main concerns are his speech and his behaviors which are autistic in nature. She said his speech is developing in a very strange pattern b/c he has words and can understand what we say, and he can also effectively communicate nonverbally (even my mom was able to figure out his needs yesterday and she only had to call me once b/c she wasn't sure what sign he was using which BTW was candy of course!!). The Dr said that it's remarkable that he knows his entire alphabet (can say them and identify them) but he cannot communicate verbally. She compared it to an infant that learns to sit up on it's own and skips right ahead to walking...no crawling, pulling to stand, or cruising. So that's a concern and she wants him back in speech therapy asap. Like THIS MONTH! Her other concern is his behaviors. She said that from what we are describing, it sounds like he is experiencing social anxiety. She then asked us if there were any recent traumatic events to cause the anxiety, but of course there isn't, so there's an additional concern as to WHY he has such high anxiety in public situations. Also she is concerned about his "fits of rage". I explained to her how everyone tells me that their children have really bad temper tantrums at this age and that it's just the terrible twos, but that I feel that he does have temper tantrums "but he also has....I can't think of the rights words to use here..." and she said it for me, "fits of rage". Described it perfectly. I know for a fact that when J falls out on the ground b/c I tell him no he can't have something, it's just a typical toddler temper tantrum and his are just a tad bit more extreme, yet they are still typical for his age. However, when I tell him that he cannot take a bath with me this time and he starts to scream a blood curdling scream and runs out of the bathroom, straight to my niece's room and pulls down the bookshelf, then runs straight to the living room and knocks 3 vase(s??) down from my mom's end table sending them smashing to their demise, all in less than a minute and screaming the blood curdling scream the entire time (yes folks, this actually happened!)then I don't think that's your typical toddler temper tantrum. I think that's a fit of rage. And it happens often and are never predictable the way that tantrums are. It drives me insane when people tell me "Oh, he's just being a boy". Whatever. If that were the case then everyone with boys would have to have a house wrapped in bubble wrap (which we've seriously considered!! lol).

One thing that the Dr was certainly pleased with are J's social skills, and as many of you may know, an autistic child typically lacks social skills. Yet J teases us, speaks to strangers in public (as long as they aren't babies), initiates play with older people, and has great eye contact as long as he isn't in an overwhelming environment. However, the only way that the Dr can be certain of his social skills is of course if she meets him. Social skills is what she evaluates when he goes to see her on July 6. Everything else that we described above, she is not expecting to see at the eval. But this is where she will see if he's actually socially awkward towards strangers b/c of course he isn't with us. She told us that he already gets points for that b/c some kids on the far end of the spectrum are not even social with their parents and that makes me so sad. So at the appt she will have J to pick out toys from a bunch and watch which ones he favors and how he will play with them. She will also initiate play with balls, balloons, bubbles, etc. The catch is that he has to play with her or at least NEAR her. Uusally that's a tough one for J b/c he only likes to play with people if they are rough housing or playing chase. Another one of those things that we though were OK, yet she told us it's not b/c that type of play is simply stimulating play which he seeks since he has sensory issues. So he needs to be playing with or around other kids (parrallel play) using items at times. Usually, when I pick him up from the YMCA childcare he is either playing next to one of the workers by himself, or sitting at the table coloring by himself. I can't say I'm worried about the eval b/c if he does have true problems with socialization, I want her to catch them at the eval. For the most part, I think he will do well b/c he loves adults and bigger kids, but I'm sure she will see that he would much rather rough house as opposed to playing with toys with her since my husband and I have that problem and his therapists had that problem as well.

Whoa. Long post. Sorry. Anyway, Dr. F does feel that J may have autism, however she doesn't think that he's on the spectrum, judging by our 1st interview, but of course she cannot make a diagnosis until the 2nd appt is completed. She explained to us that in the past it used to be that a child HAD to have socialization problems in order to be considered autistic, but research has found that this is not always the case and there are several children with autistic tendencies yet they are pretty social. These kids are considered to have atypical autism and they are diagnosed as PDD-NOS. She believes that this may be the case with J, but again, she cannot be sure until she does his social eval. She said that either way, just from the strange speech development pattern, the social anxiety, and the bad tempers, that he will have some type of PDD diagnosis. She also scheduled him to have genetic testing done to confirm. Neither of us flinched at the news. I really think that the minute parents walk into that clinic, sign their name on the list, and sit in that room for the appt is when acceptance occurs. We knew what we were there for and that the odds of leaving there and hearing "Oh there's nothing wrong with your child, he's developing normally!" is pretty slim. So with that she told us that she wants him back in speech therapy asap, and he needs to get into behavioral therapy and to see a child psychologist. None of which is available to us here in good ole MS thanks to the insurance that we have, Tricare. We could just wait until July when he gets his official diagnosis and then apply for Special needs Medicaid, but the approval process for that takes at least 30 days, so we are looking at him not having coverage until the end of August if we go that route. He's been out of therapy since the end of April and he will be 3 in December, so that's just not the best idea. The best thing that could happen for us now would be for this house to sell like this month and we can pack up and move to Mandeville and start J's therapy there asap (I already have the lists of therapists available to him in Mandeville). But honestly, what may end up happening is J and I leaving my husband here and going to stay with my parents until hubby separates from the military in Oct. It will be hard, but we have to do what's best for J right now. Tomorrow we will talk to the real estate agent to see about lowering the cost of our house without us losing any money and I will be on the phone calling the numbers given to me by the Dr about any funding available for kids with autism just to see if we can get him some help here while we are still in MS. We'll see.

Oh and just as we suspected, J is still the same ole J he was before this appt. The word autism doesn't make him look (or act!) the least bit different! Strange huh?? lol. Love that little boy :)