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She is getting way to big. She is probably going to be starting PT in the next week. I'm thinking we will start it here and then when we go to Florida in two weeks we can get a therapist there also. Not sure yet how we are going to work that out, but we are going for a month and I don't want to pull her out just as she starts.
She is such a sweet, sweet babe. I just can't believe how blessed we are.
Have you watched Lars and the New Girl? Well you should. It was so fantastic. So, so fantastic. I loved the direction it went.
Also, Waiting for Guffman, Best in Show, A Mighty Wind are great also.
As is Bottle Rocket.
Watch them. Really. Watch them.
Eric is one of the coaches for Jagger's t-ball team and it's something that I love. Something that, when I was single, I had hoped my future husband would do. It didn't matter what sport it was, just that he would be involved. I know he will coach Jagger in basketball someday. I know it. I have told him that he WILL coach one of Hazel's teams and he says he will not coach her basketball. He has drawn the line. He will coach another one of her teams, but not basketball. Apparently, he hated watching the girls teams when he played in high school and college. He said they never listened to their coach. Whatever. If she plays basketball, he's coaching it.
Anyway, the other day he was third base coach for Jaggers game. There are a lot of Hispanic kids in the league. Some speak english and some don't.
Eric: Ok, Carlos*, you need to go fast when the ball is hit.
Carlos: looks at Eric *blink blink*
Eric: Carlos, you really need to go fast ok? Do you know what I'm saying? Fast!?
Carlos: Blink. Blink.
Eric: Carlos?
Carlos: Ándale?
Eric: Yes! Ándale, Carlos, Ándale.
And he did. He ran very fast. Very, very fast and slid into home and He was safe.
*name changed.
So, I am looking for a Cabbage Patch baby for Hazel. Not just nay Cabbage Patch though. An old-school preemie for now. It looks like Ebay is going to be the way to go in this respect.
I remember the day I got my Cabbage Patch. Growing up, we didn't have a lot of money. My dad worked really hard, and when things were bad, like we have to eat popcorn for dinner bad, my mom would work nights at the hospital as a RN in the mother/baby unit.
Buying a Cabbage Patch doll for me was not something that was no big deal for my parents. It was a sacrifice. A big sacrifice for them. I know it didn't help that I really, really wanted one. All of my friends had one or were getting one and I just really wanted one. I was five-years-old.
One day, it was rainy and cold out, and my brother and I were sitting in our house with my grandparents. The front door opened and my parents walked in. They said they had a surprise and had us sit down and close our eyes. When we opened them, we each had a gift in front of us with a blanket thrown over it. We pulled those blankets off and there were the two most perfect babies in the world.
My girl had red, red, pig tails and freckles. I felt like I could relate to her because I had freckles also. Her name was Harriet.
Richards Cabbage Patch had brown hair and I couldn't remember his name for the life of me. Chris? Kevin?
That baby meant more to me than anything I owned and anything I was given for awhile after that. I knew how hard it was to come by a Cabbage Patch back then. I knew it was nothing short of a miracle that we had gotten one. I knew my cop/detective of an "uncle" was the reason we had both had one and I understood that.
Harriet was special to me. I was a tomboy and didn't really play with dolls, but I loved her. I felt like she was real and we would talk before I fell asleep each night. I loved her tremendously. She was magical and fantastic.
I hope that Hazel feels the same way about her Cabbage Patch. She probably won't because she won't know the hardship that went along with obtaining one. I can only hope though that she gets it.
Until then, I will be scouring Ebay for the perfect baby for her. It may take years, but she has a few until she is ready for it anyway.
Let me introduce you to Amy. She rocks and you should read her. She also takes really great pictures of her awesome family.
This child is crazy....
Very few things compare to crawling into bed and curling up next to the sweetest little girl in the world. Pulling the down comforter up and in around us and smelling her sweet baby smell as we drift off into dreamland.
Hazel is my joy. She is complete magic. She is laughter and sunshine. She has just been my savior.
This is how Jagger came home from school. I took these within minutes of him walking in the front door. His face was so red from playing hard and his hair was crazy. His shirt was soaked and I will be honest and say he didn't smell the greatest. Who cares though when you've had fun right?
Eric was behind me doing silly thing and Jagger couldn't keep a straight face.
And were back to normal...it was fun while it lasted.
It's a dreary day today. I woke up to my sweet baby boy asking if he could get in bed with me because he was afraid of the lightning. Not the loud, window shaking thunder, but the lightning. I smiled and pulled the covers back for him to get next to me and cuddle.
It's noon and we are all back in my bed. Both kids are asleep next to me, P.S. I Love You is on the TV, I am listening to quiet rain outside my window, and I am fully aware in this moment, how amazing my life is.
Sure, we have had and still have difficulties with Jagger, but those difficulties have made our life full and rich. I fully believe that Jagger was given to us to be our teacher. To fine tune our patience. To cultivate our compassion. To help us surrender to grace. There have been numerous occasions and circumstances that he has been my savior. I can only pray that in the future Jagger is able to fully, and without question, understand and embrace that fact.
And Hazel? Well, she's just magic. She never ceases to smile and laugh. She is proof to me that God is real and he knows what we need and what we can handle. I soak up every minute with her because I can't believe she exists. When I think back to how we almost decided not to have another child, my heart aches at the thought that we could have missed out on the pure joy that she exudes.
I don't know why I deserve this, but am everyday thankful and grateful.
My life is full. I want for nothing.
So now that I have taken a couple of days to really clear my mind and think about what I am feeling, I think I may have sorted my thoughts out.
We have not taken Jagger to a ton of doctors because so far I have trusted the evaluations he has had. I have agreed with the results of the testing because it seemed to line up with what we see at home and what his pediatrician in Florida saw and felt. The only time I was confused was when we went to Columbia and one of the therapist said he was fine and not on the spectrum. We were happy with that when we left, but then when they called us weeks later with the results of the evaluation, after all the testers and docs had met and gone over everything, they said that he was on the spectrum. We were confused for a minute, but in the end we trusted them. It helped that his pediatrician was able to explain why that happened at first and that he had spoken with them and agreed with them also.
We have followed the doctors advice and placed Jagger in therapy and did the hours that were required of him. He is a different child because of it. We have continued to get him evaluated at the times the doctors have recommended and followed all the new instructions. This last evaluation just doesn't sit right with me. Here is why.
There will be times when I will be telling Jagger something and he doesn't understand what I am saying. Something simple like, "This is my cup and this is your cup." He freaked out for 45 minutes in St. Kitts that I was wrong and that my cup was in fact his cup. My daiquiri had alcohol in it, his obviously did not. So, I knew which was which. It just wasn't registering.
The other day he took this little egg plant thing of the windowsill in the dining room and brought it outside. After a bit I told him it was time to bring it back inside and put it back. He just looked at me. I repeated that he needed to pick it up and put it back inside on the windowsill. He eventually picked it up and placed it outside on the windowsill. I told him that no, he needed to put it back where he found it and he placed it back on the driveway and looked at me confused. So, I said, "Do you remember that it has been inside on the windowsill for a long time." He said yes. I said, "OK, go put it back there." He picked it up and put it on the outside windowsill. It was completely not registering that it needed to go back where it came from. I asked him two more times about the inside windowsill and he told me he knew, but still put it in the wrong places. It's sitting in the driveway right now. He was confused and I meant to just give him a little time to clear his mind and then I was going to take him to the egg and then walk him to the inside windowsill, but we got distracted with company. I'll do it this afternoon though.
There are times we will be talking to him and ask him a question and he will say, "I don't know what to say." He's not acting up. He's not trying to just get out of talking. His face clearly looks confused and he doesn't know what he should say.
These things don't happen all the time, but they happen enough that they are noticeable. His short term memory is not great, but his long term memory is phenomenal. It's actually pretty cool what he remembers and has retained.
When I brought this up to the doctor he kind of blew me off at first. Because I have noticed this happening more, I wanted an answer. I brought up again and he again blew it off. So I brought up another instance. He finally said, "What do you think? He's retarded? Is that it?" I was shocked for a minute. I was actually ready to rip him a new one, but I took a breath and told him that, "no, I know he's not retarded. That I know he is very smart actually, but I am telling you, this is a real issue that is going on." "He's not understanding us sometimes."
His response was that Jagger is OCD and that he can't move on in a conversation because he fixates on it and then obsesses over it. That the issue with the drink in St. Kitts was that he couldn't get off the topic, not because he didn't get it. There was another instance I had brought up and he said the same thing about that.
That just doesn't sit right with me. Jagger is OCD in some areas. He always have been. Changes to routine are not easy for him. He can be rigid over certain things, but I think this guy is wrong. I think he was blowing me off. I felt it at that moment and I felt it even more an hour an a half later when the meeting was over. He had issues himself. If he said the sky was blue, and I agreed that yes, it was in fact blue, he would respond that it was really light blue. It was the strangest thing. It was like he was the doctor and only he knew the completely correct answer. I didn't feel like he respected that I knew my child.
Who knows. I could be wrong. Completely wrong. That's where it gets so hard for parents with children with special issues and needs. We are constantly looking for the answer that fits. Constantly seeking for more. Reading book after book, talking to each other, scouring websites and message boards.
The outcome of the evaluation was that Jagger has:
1. ADHD
2. Previous PDD-NOS diagnosis that has been treated and should be followed.
3. A possible genetic disorder that has not yet been discovered (which was kind of weird I thought, but he does have some markers that can show a genetic abnormality, they just doesn't line up with anything)
4. A possible learning disorder that will most likely involve reading and spelling
5. epilepsy.
It's hard because you will have people saying you just want something to be wrong. That you just need there to be something else. Why can't we just take the doctors word for it? Well, how can you just take their word for it when it doesn't sit well with you? This is the first time in these five years that I have said something is not quite right and that I think the doctor is wrong.
I don't need the perfect child. I don't need the smartest child. I don't need report cards full of A's and his teachers bragging about how smart he is. What I do need is to be able to sleep at night knowing that I did everything in my power to make sure Jagger has the best possible chance at having a successful life. That I fight for what I know he needs. That I don't just blindly follow someones opinion because they have letters after their name. That 20 years from now I can say that I did everything I could do so that my child had the tools he needed to use in order to learn and comprehend properly. That maybe his struggle was less because we found the best way for him to learn and didn't just blindly accept a fact that we disagree with.
I just want him to be happy. That's it. Right now? He's not that happy and I will do everything in my power to fix that. I don't care how much it costs.
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