Saturday we went to see Yo Gabba Gabba Live with Meema (my stepmom) and a couple friends. My sister is interning at the local sports/entertainment venue in our area and got us all tickets. If you can imagine, Yo Gabba Gabba in concert was a little over stimulating. I usually avoid those sorts of things for fear of him being overly stimulated, but all in all it went ok. I had a stupid emotional moment where I actually got tears in my eye because my son was sitting and watching the show and not crying. Had this been a year or so ago, things like this would make him cry. On the flip side it hurts my insides because he doesn't act like the other kids, he doesn't dance much, he just sat there in awe chewing his shirt......non stop shirt chewing. I'm not sure if it was because of the stimulation that he was doing it, but he soaked a shirt.
Later on that night I checked my voicemails, and to my dismay had missed two calls from the pediatrician. Some blood work had come back, and to our surprise, Frankie hit 3 out of 4 markers positive for Celiacs disease. I would have never thought it, I mean his poop was hard now since we started Diflucan so, how can Gluten be effecting him? I'm not doctor but I can guess gluten and yeast are friends so, maybe temporarily killing one can help the other. Well we have a GI pediatrician appointment next week. Till then I continue feeding him the same things.
Monday, October 3, 2011
Wednesday, September 28, 2011
Just when you think it's not working.....
Your kid does something to give you that glimmer of hope. We are 2 weeks and 2 days into Diflucan, I had heard around 2 weeks you can start seeing a difference. So when Monday rolled around and the boy was having issues at school I was some what discouraged. Listen, I'm not putting all my hope into this, because I don't want to be disappointed, but I would like to see something.
So today comes, like any other morning.....except our bus was 25 minutes late. While waiting Frankie saw Keri who was Frankies team leader during E.I., she works with another child 3 houses down. We never see her, well we see her awesome Mercury Sable ( haha), but that child's bus usually comes after ours. Frankie was so happy to see her, he tried to pul her toward our house, but then the bus came, along with the tears. I knew he would miss the girls, but that was a little heart breaking. Off to school the boy went.....and 7 hours later he returned.
He was tired, but he had a great day at school! He ate lunch and apple pie! He went pee pee on the potty 2 times! Then at home he played nicely with his sister and actually ate dinner. The thing that surprised me and made me super excited was his language use tonight! My mom showed him a cake that is for Lia's birthday and an extra she bought. She tells Frankie, "this cake is for lia" and he points to the other cake and says " and this cake is for Frankie?". So appropriate!!! Then I picked him up and he said " you put me down" and when I ignored he said it again! Lastly we watched Diego before bed and he was answering back to the tv. " is this a sloth?"......" no, no, no that is not a sloth, that a monkey!!".
The last hour of the day was fantastic, these are great things!
So today comes, like any other morning.....except our bus was 25 minutes late. While waiting Frankie saw Keri who was Frankies team leader during E.I., she works with another child 3 houses down. We never see her, well we see her awesome Mercury Sable ( haha), but that child's bus usually comes after ours. Frankie was so happy to see her, he tried to pul her toward our house, but then the bus came, along with the tears. I knew he would miss the girls, but that was a little heart breaking. Off to school the boy went.....and 7 hours later he returned.
He was tired, but he had a great day at school! He ate lunch and apple pie! He went pee pee on the potty 2 times! Then at home he played nicely with his sister and actually ate dinner. The thing that surprised me and made me super excited was his language use tonight! My mom showed him a cake that is for Lia's birthday and an extra she bought. She tells Frankie, "this cake is for lia" and he points to the other cake and says " and this cake is for Frankie?". So appropriate!!! Then I picked him up and he said " you put me down" and when I ignored he said it again! Lastly we watched Diego before bed and he was answering back to the tv. " is this a sloth?"......" no, no, no that is not a sloth, that a monkey!!".
The last hour of the day was fantastic, these are great things!
Tuesday, September 27, 2011
You have fun at school?
I got Frankie off of the bus yesterday, he was so happy! He grabbed my face and said " you have fun at school?". Grrrr, now he is expecting what I say. Kim came yesterday for his first real ABA session at home. She had an idea to make pictures on the sheet that the teacher sends home so he can tell me what he did at school using visuals instead of words. Bus has been better, now he smiles when the bus comes!
The last two days of school he had some issues with aggression. Everyone keeps telling me it's normal but I am one of those crazy moms that thinks her kid is perfect. Even with Autism, he will have perfect Autism. Did I mention I was crazy?
Today I didn't get any violence notes home, I got "Frankie refused to eat lunch". In the communication notebook Andre (his teacher) said he was kicking to be funny. I was pretty sure this was what it was, he doesnt aggressively kick, he does it for attention. I find the more I feed into the kicking, the more he does it.....if I ignore him, he will find something else to push mommies buttons. He is in a HUGE testing phase right now. He is testing at school and at home. Not a fan, no no no.
On a positive note, Frankie made some pee pee on the potty today. His speech teacher also wrote how he used a sentence appropriatly. On Fridays Frankie has group speech, so today as he passed one of the classrooms he said " where is Jayden?". His speech teacher was thrilled, she id they have only picked up Jayden at that room twice so she was amazed he remembered. I wrote back about his memory, it's amazing. A year later he remembers things, he remembers he hates Super cuts, he remembers routes to people's houses and miles away he knows where we are going. He is a little ball of miracle frustration this week.
The last two days of school he had some issues with aggression. Everyone keeps telling me it's normal but I am one of those crazy moms that thinks her kid is perfect. Even with Autism, he will have perfect Autism. Did I mention I was crazy?
Today I didn't get any violence notes home, I got "Frankie refused to eat lunch". In the communication notebook Andre (his teacher) said he was kicking to be funny. I was pretty sure this was what it was, he doesnt aggressively kick, he does it for attention. I find the more I feed into the kicking, the more he does it.....if I ignore him, he will find something else to push mommies buttons. He is in a HUGE testing phase right now. He is testing at school and at home. Not a fan, no no no.
On a positive note, Frankie made some pee pee on the potty today. His speech teacher also wrote how he used a sentence appropriatly. On Fridays Frankie has group speech, so today as he passed one of the classrooms he said " where is Jayden?". His speech teacher was thrilled, she id they have only picked up Jayden at that room twice so she was amazed he remembered. I wrote back about his memory, it's amazing. A year later he remembers things, he remembers he hates Super cuts, he remembers routes to people's houses and miles away he knows where we are going. He is a little ball of miracle frustration this week.
Friday, September 23, 2011
A why me kinda day
Yes, I am having a why me kind of day. Look at that kid, he is so cute, I shouldn't feel like this. I woke up to a ticket on my car. It the end of the month, I guess the Nassau County PD decided to drive around blocks at 1:45 am looking at inspections. I was waiting till Monday to get the inspection because of the check engine light and having to clear that and drive it for 60 miles first. I suppose the officer wouldn't care if I had left a note about my situation.......grrr. Such a waste of a day, wont have the car back till Monday....husband is working till Monday......but then has to go to Westchester to deal with an issue with a prior employer.
My son came home with a note saying he was have outbursts and trying to flip chairs, and refused to eat lunch. I knew that he would regress, he was going from 15 hours 1 on 1 to 30 hours in big groups. I was foolish to think it wouldn't happen and that Frankie would keep excelling at the speed he was going. So sure he would talk more. Here I am 3 weeks into school and my son has become Echolailic again....F$*K......I'm suppose to say How are you and he is suppose to say "I'm good" like he always has but no....he looks at me and says "how are you?" S&%T, S&%T, S&%T.........I miss him. I feel like he gets home and I spend 3 hours with him, most of which is eating dinner and getting ready for bed.
I would like to be more emotionally OK here at the Neurotypical Mom but things are just bad. I have to tell myself though, its OK. Maybe its good for me to be so raw on here, to tell you guess what, this sucks. Autism sucks....and it stole my kid. Even if I recover him, I'm not going to get it back. I'm watching my daughter do things Frankie still hasn't done.....I didn't think that was possible, I know what she wants, i can read her cues, I don't feel helpless as she cries because i don't know whats wrong.
I know things can get worse. I will not tempt God by saying it cant get worse.
Thursday, September 22, 2011
School is making me feel out of control
So, I'm a control freak. I wish I was a neat freak, but no, just a control freak. I liked when I had Frankie getting services at home because I ALWAYS knew what was going on. Don't get me wrong, I get tons of notes home and write back and forth but I'm not there.
I guess I am lucky because I have heard many times about kids regressing when they start school or are placed in a program that doesn't fit them. Well Frankie hasn't regressed.....he is kind of just staying the same. I'm spoiled though, he gained so much in the first few months of his ABA therapy that I just assume he will always proceed in leaps and bounds. The reality is that, his progress was a blessing and now in reality progress is not always so fast, sometimes it is SLLLLOOOOWWWW. He comes home and mentioned things here or there about school, but never to me. He will just say "Jada and slide" so I figure he went to the playground which was confirmed in his communication notebook.
Today he starts ABA at home again with Kim. He is only getting 2 hours a week, but....whatever its something. I had to fight to get that, it was so bad they didn't even write it was behavioral therapy on the IEP. The reasoning for that was so that administration wouldn't get mad....the games we have to play because of budget cuts.
On a side note we are on day 10 of Diflucan. I am crazy and expected miracles EVEN when I was told it would take weeks. SO, yes it will take weeks to see anything, if they gave him more medicine it would have made him sick, to kill of yeast that much would have made him sick and that's not what we are looking to do. I will keep you updated :)
Tuesday, September 20, 2011
The Incredible Hulk...aka Frankie
Well today was day One on the bus.....a little sad at first, but things went fantastically. You have no idea....ok maybe you do.....how great it feels to not have to rush out of the house with 2 kids to get to school. I stroll outside in an ugly sweater and glasses with a baby in a poopy onesie and wave bye bye! I guess my only issue with the bus is I feel he is gone for so much longer. My biggest issue with school is that i dont feel like i get to spend much time with the little guy anymore. Right now he is dancing around some piggie banks and talking about Thomas...he is the best.
Now my blog title is referring to my son and his ability to Hulk up at a moments notice.....sigh. Today my calves and biceps are burning, not from working out, but from holding a 3 year old while he was having blood drawn. We ended up finding a lab closer that had more then one person on staff....actually when I got there, there was 2 and they called a friend from the Dr office next door to help. Well long story short we got 3/4 of the blood we needed. I literally could not hold him anymore, sweat poured from my face as he fought so hard his arms started to turn purple. We will have to go back but at least i know they are very nice at the Bethpage lab. I am still amazed though at the strength in this 3 year olds body. I had my legs wrapped around his, my arms across one arm and chest, another woman holding his arm, another one taking blood and the last one passing her the tubes.....a 4 person job on a 37 lb boy with super strength!
Now my blog title is referring to my son and his ability to Hulk up at a moments notice.....sigh. Today my calves and biceps are burning, not from working out, but from holding a 3 year old while he was having blood drawn. We ended up finding a lab closer that had more then one person on staff....actually when I got there, there was 2 and they called a friend from the Dr office next door to help. Well long story short we got 3/4 of the blood we needed. I literally could not hold him anymore, sweat poured from my face as he fought so hard his arms started to turn purple. We will have to go back but at least i know they are very nice at the Bethpage lab. I am still amazed though at the strength in this 3 year olds body. I had my legs wrapped around his, my arms across one arm and chest, another woman holding his arm, another one taking blood and the last one passing her the tubes.....a 4 person job on a 37 lb boy with super strength!
Monday, September 19, 2011
Boo Boo Arm
So I have to get blood work done on the boy to check metal levels and allergies and yeast etc. Bringing my son for these test leaves me less then thrilled and very on edge. You can ask my husband about me on edge, Friday morning I lost it, Anything and everything that was bothering me came out and I threw it all in his face, all because of a blood draw stressing me out.
My mother in law took a few hours off on Friday so we could drive 35 minutes away to Great Neck to a lab by the hospital. The doctor preferred we go near the hospital in order to keep the blood cold or what not. Now I had called Wednesday to give them a heads up about my sons situation and ask if a special lady who was good with kids would be there. The woman who picked up the phone chuckled and said "ma am, anyone can handle a 3 year old, you don't need Mona . We are all trained to do this blah blah blah".....anyway, Mona would be in Thursday and of course that wasn't a day I could go. Stupidly I assume this bitchy woman was right and anyone could handle a blood draw, so I will go Friday.
I get to the lab and walk in to find a huge empty office with a girl who looks about 19 at the front desk. No one else is there, i fill out the paper work she looks at me and nervously says "you can hold him down right?". To which I reply in a nervous laugh "um I hope so". The truth is i cant hold my son still, he is 37lbs of brute strength, but in my mind there certainly had to be more then ONE person here to help. Wrong, one girl who weighed about 100lbs and me. She pulls the tubes and says "WOW, this is going to be a lot of blood".....did she really just say that? As though I wasn't freaked out enough that they were taking ELEVEN vials of blood from my child, the person doing it seems shocked. So here I sat, trying to hold a child who was crying from the tourniquet......she stuck him and he flinched....WELL of course you just out a needle in him. She gets flustered and says she cant do it. My son is bleeding down his arm and she cant do it.
I called the main offices and complained about lack of staffing and the fact that I drive that far because apparently ANYONE can handle a 3 year old. I cried in the car, I cried because I knew I would have to do this again.....and honestly once is really enough with this tests.
My mother in law took a few hours off on Friday so we could drive 35 minutes away to Great Neck to a lab by the hospital. The doctor preferred we go near the hospital in order to keep the blood cold or what not. Now I had called Wednesday to give them a heads up about my sons situation and ask if a special lady who was good with kids would be there. The woman who picked up the phone chuckled and said "ma am, anyone can handle a 3 year old, you don't need Mona . We are all trained to do this blah blah blah".....anyway, Mona would be in Thursday and of course that wasn't a day I could go. Stupidly I assume this bitchy woman was right and anyone could handle a blood draw, so I will go Friday.
I get to the lab and walk in to find a huge empty office with a girl who looks about 19 at the front desk. No one else is there, i fill out the paper work she looks at me and nervously says "you can hold him down right?". To which I reply in a nervous laugh "um I hope so". The truth is i cant hold my son still, he is 37lbs of brute strength, but in my mind there certainly had to be more then ONE person here to help. Wrong, one girl who weighed about 100lbs and me. She pulls the tubes and says "WOW, this is going to be a lot of blood".....did she really just say that? As though I wasn't freaked out enough that they were taking ELEVEN vials of blood from my child, the person doing it seems shocked. So here I sat, trying to hold a child who was crying from the tourniquet......she stuck him and he flinched....WELL of course you just out a needle in him. She gets flustered and says she cant do it. My son is bleeding down his arm and she cant do it.
I called the main offices and complained about lack of staffing and the fact that I drive that far because apparently ANYONE can handle a 3 year old. I cried in the car, I cried because I knew I would have to do this again.....and honestly once is really enough with this tests.
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