Monday, April 29, 2013

Update

I started this blog because my sister suggested it, she said it would be cool to have all of our life updates on our own webpage, that we could visit forever. Well, I am so happy I listened to her. Smart girl ;)
As the time has gone by, I've realized, I am doing this for our family, to remember the fun times, etc. But now, I am not only doing this for me, but I am in hopes of possibly reaching out to other parents who struggle with the issues we have had with Aaden. If there is one parent I have helped through this process, I feel like all this typing is worth it. If you are a parent of a child that you feel isn't 'normal' please contact me- I would love to get to know you!

With that being said- when I mention not 'normal' I don't mean there is something 'wrong' with Aaden. Because he is, by far, brilliant. When he was 14 months old having 2-4 hour fits because he wanted a blue sippy cup, when 14 month old children shouldn't have any recognition of their colors, that is what I classify has brilliant. As a parent, you know when something isn't right, you know when there is more going on, you know your child better than anyone else on this planet. Don't EVER let a family member or your pediatrician tell you otherwise. You are not bound to the pediatrician you picked before your child was born- no one knows the type of child your baby will develop into, so if you don't feel comfortable with the advice you are getting from your pedi- SWITCH! Seek help-  we found our own behavior councilor, which led us to a neurologist. Please don't settle for 'It's just a fit' or 'Let him cry it out'. Evan and I did that- and all I can say about it now is, I wish we wouldn't have. I am crying now, thinking about all we have been through, and not being by Aaden's side when he was having a bad day, or while he was unconsolably screaming and couldn't explain to us what was wrong- while I was in the next room letting him 'cry it out', breaks my heart. We have had countless people tell us there is nothing wrong, or they don't believe the diagnosis, or we shouldn't have Aaden on medicine. I can tell you now- medicine has saved his life, the way his brain functions- or that he has any function to his brain. Some of these people are close family, and we have agreed to disagree about any prognosis, which has worked for us. They still pray for Aaden, and I know they want what is best for him. Well- we are his parents, and we have done what is best. I honestly, wholeheartedly believe that.

I never knew what an 'Attachment Parent' was. From what I remember growing up, I was not raised that way. My dad always said, 'Children were meant to be seen, not heard'. This is what I took with me when Aaden was born. Not that my dad was wrong, but when you have a child who can't tell you what is wrong, that concept doesn't work. I grew up respecting my parents- or at least I feel I am still a respective adult. So, I am thankful for the way I was brought up! We had chores, we didn't talk back, we were required to make good grade, etc- and when we didn't, there were consequences. Now, anyone that remembers me in high school- I was punished the whole 4 years... obviously I am a bit stubborn and thought the consequences were more fun than just doing what I was supposed to do. I look back now, and wonder if that's where or when I started having anxiety issues- I certainly have them now, and they were around way before Ev and I said 'We do'. Anxiety isn't something my parents pushed on me, or 'let' happen. But now, as a parent, I do believe there are different ways to handle a teenager like I was. I commend my dad and grandparents for helping me grow and develop into the person I am today, I am beyond thankful I was responsible and held accountable for my actions. 

I don't think I am 100% Attachment Parent. However, figuring out what works best for my kids has led me to believe the AP way...
  • Tantrums represent real emotions and as such should be taken seriously
  • Some emotions are too powerful for a young child's underdeveloped brain to manage in a more socially acceptable manner
  • A parent's role in tantrums is to comfort the child, not to get angry or punish her
When you have a child who doesn't respond to the 'crying it out' or whippings... the only thing you can do is stand by their side. Now, I can't say I've never raised my voice at the boys- because I have, neither can I say Evan and I haven't fought in front of them. Because although we are working on it, we still do. I do believe children learn by example. So if I am yelling at Aaden, and he yells back- isn't that a learned behavior?! Yes, I believe it is. So how can I fuss at him for doing something I do? It's kind of like a parent who curses and/or smokes, telling their child not to. You lead my example. 

We also co-sleep. Yes, all 4 of us sleep in the same bed. I know a lot of people who do not agree with this, and that is fine. Aaden slept in his own room for about 4 months, of his whole life. Maybe that's when Brady came along... yep it was. :) One day I hope he will feel comfortable sleeping in his own bed, but he doesn't right now, and I'm not going to force him in his room while he is scared, or not ready. Brady on the other hand just likes to snuggle & that's fine by me!! 

All parents do this parenting thing differently, and have their own beliefs. Evan and I were not raised the same way, and we do struggle with how to discipline etc. But it's really not about how we were raised, it's about meeting the needs of our children.

With all that being said- last week we finally saw the developmental pediatrician we have been waiting to see for months. It is easy to say I knew we were in the right place when the behaviorist walked in the waiting room with a maltese puppy that was ABA certified. Pretty amazing.  Prior to the appointment, I filled out a book worth of paper work. Tons of different ranking scales, family history, our 'story', and other evaluations that have been completed. So going into the appointment, I thought Ms. Diana, the behaviorist, would have a general idea of who Aaden was. Well a few minutes into the appointment, she handed me, yet another, ranking scale. Then told me she doesn't normally look over the paperwork we submit prior to the appointment, because she wants to get to know the child, not 'know' what the parent wrote down. We talked for a while, luckily Evan was actually able to come to this meeting. The whole time, Aaden set there so quite, and acted as if he was tired, definitely not the normal Aaden, who is always bouncing off the walls and being as loud as possible. It was time for her to start testing- she asked if he would do better with us in or out of the room, before we could answer, she went ahead and started with us there. I am so happy she did, because sitting there, I learned so much about Aaden- and saw a side of him we don't see at home. She did an IQ comprehension test first, where he had to verbally answer some questions- the crazy kid was whispering- i had no idea he could do that!! ;) He did fairly well, but you could tell when he didn't know the answer, because he would just throw his finger at the book and point to something... Then she did a deaf IQ test (I'm unsure of the medical term) but he sat in a desk, and she placed a card with different patterns at the top, then gave him blocks to match to it. He went a good 12 rounds before he missed one series of patterns. He did outstanding. It was adorable to watch him concentrate, he would stick out his little tongue, and place his head on his hands. What really got me was- if the blocks were colored, he would work the pattern out a color at a time. Same with shapes, he would do a particular shape at a time. That is just how his brain sees and processes things, and I love it.


So after hours of being in evaluation, answering millions of questions, and chatting with the behaviorist,  Aaden was diagnosed with Aspergers Syndrome. Before Thursday, I had only heard of Aspergers, never even read about it. With the explanation from Ms. Diana, the gap between Aaden's communication/verbal age, which is about 2 1/2, and his non verbal/IQ age, which is almost 6, is what classifies him as an Aspergers child. He does communicate, and he does talk- that isn't the issue. The issue lies with him being able to think things through, or make sense out of common things. An example I used while talking to my dad about it was... Aaden knows who the Easter Bunny is, and he knows the Easter Bunny leaves him surprises, however, if he actually thought about the whole idea of the Easter Bunny- and thought about the Bunny actually having to come into our house to deliver the goodies, he would not be a fan. He would by far be completely terrified. So basically Aaden is a child who suffers from anxiety that has a communication problem, but is intelligent beyond his years. We have a very good plan in place- he is going to start receiving speech therapy at school, he will start occupational therapy, and will start a program at Busy Bees. Busy Bees will also help with his sensory disfunction. All the therapy is in addition to 'Eating Right for your Type', which is eating for your blood type. We have a prescription to have some blood tests done, to see if this is a genetic disorder, to verify the Respirdonal he takes isn't giving off too many female hormones, to name a few. Luckily, he has major veins, unlike myself, so it shouldn't be an issue.

We will currently remain on the same medicine regiment. As Ms. Diana said, by starting medicine when we did, we saved his brain! Talk about the best sentence I have ever heard, since most of the time- all we hear are negative comments about meds. What she meant was- if Aaden would not be on medicine, and he was still having major meltdowns, as he was at 14 months old. It would have slowed down his development. Although the neurologist we saw in Baton Rouge wasn't completely correct about Aaden's first diagnosis, she was on the right path. 
A few people I have discussed the new diagnosis with have asked me how I feel about it- to be honest- It's just a label. One I don't necessarily need, other than knowing how I can help Aaden. We have thought for a long time that Aaden had some form of Autism. Of course, the high functioning Autism, but none the less. It really doesn't matter. I hate that he suffers from anxiety, and can't express himself how he would like to. But at the same time, with a diagnosis, comes a plan to make him better. So as this is all new, and I still do not know much about it, I am fine with the diagnosis. Aaden is my sweet, smart little man. No label can take that away from me, nor him. 


Just to recap- as I said before, you know your child better than anyone else. Fight for them!!! They can't fight for themselves!! 






2 comments:

  1. Hey court! That is great! Now that you know what is going on- you will be able to address issues in a way that is productive instead of just frustrating for you and him! I had a pedi onetime tell me that a diagnosis is like a road map for the parent. Isn't that a neat concept? Before a diagnosis, you are dealing with something that makes you feel lost, but now you know Aaden functions and sees the world, so you know how to parent him in the best way to help him reach his full potential! Kudos to you for fighting for you child! :)

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    1. *know HOW Aaden functions... not that he functions, lol. one word can change the whole post! oops! 80)

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