Quick Update

I've been meaning to update for a while now, but we have been very sick in this house! Jayden is getting over his very first double ear infection and I am getting over a terrible sinus infection and bronchitis that never completely went away from last month. The fact that I am able to open my eyes and actually sit up and type this updates means that I am feeling SO MUCH better. My house is very happy about that. Let's just say that if Mike was a bachelor, he would not keep a clean house!

Anyway, Jayden was accepted into the school system for additional therapy once he ages out of EI next week. The main reason for his acceptance: Autism. He had several small tests done on him during the eval including speech, cognitive, gross/fine motor, and social emotional, along with a GARS-2 eval, which is a screening done to show if a child shows signs of being autistic. Scores or 85 or higher means that the child is "very likely to have autism". Jayden scored 96. I wasn't surprised but my husband is still grasping at straws and hearing the behavioral therapist say, time and time again, that he is just not autistic, gave him the straws to grasp at. He's also been told that as Jayden gets older, the behaviors will disappear. That's not always true in a child who is diagnosed at such an early age. Truthfully, as we see some behaviors fade away (the headbanging), we will see new behaviors show up (lack of eye contact). The silver lining of it all is that, while Jayden does exhibit extreme autistic behaviors, he doesn't seem to suffer from any of the learning disabilities associated with autism. This is a positive and a negative thing for Jayden though. Because he is so bright and social (he is VERY social as long as he can control the surroundings) people will just tend to call him a "bad, spoiled child" when something sets him off and his behaviors spark. That's difficult for me b/c I know that there is a reason why Jayden does the things he does, and in my mind, I feel like once you accept that he is who he is for a reason, then it will be easier to deal with those behaviors. If people continue to view him as the bad child, he will continue to be pushed into situations that he just cannot handle and he will not be able to progress. So, if me helping my child to cope with what I know is a stressful situation to him is considered me spoiling him or babying him, then so be it. I know that he finds comfort in it and that's my job as a mother, to comfort him.

He has one more appt with his behavior therapist prior to exiting EI. She told me that he wouldn't get accepted into the system b/c his speech isn't delayed and b/c he has no social issues and b/c he is CLEARLY not autistic. Well, he tested at a 24 month level in speech and social, a year behind where he should be. I guess someone needs to stick to what she knows and it's obviously not child development.

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!!

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 :)