Niko is my little rockstar today. First of all, had a great call from the speech pathologist yesterday. After just two speech sessions Niko is strutting his stuff. She sees great promise and potential.
Niko - 1
Ominous, vague diagnosis - 0
I also took Niko to his regular pediatrician today to check for monkeys in his ears. No monkeys AND Niko has gained a good amount of weight. He's almost 26 pounds and at the 10% percentile for weight!!! I've been having an ongoing battle with that effing weight chart. How you like them apples, stupid chart!! Tell your other chart friends to beware!
Niko - 1
I'm a loser for a mom chart - 0
Thursday, March 21, 2013
Therapy, therapy and a little more therapy
The developmental pediatrician is recommending the following for Niko:
1) 2 hours a week of occupational therapy
2) 2 hours a week of speech therapy
3) TWENTY hours a week of ABA (translation = putting Niko is special school)
Excessive much? I don't want to be that parent who's in denial, but I also think this is a bit much. Niko currently receives 1 hour/week of special skills training and 1/hour week of speech therapy (just started speech two weeks ago). The feedback from providers has been great. Niko is making progress. Niko is doing well at school. Why would I pull him from a place he enjoys, and where he is surrounded by typical role models and put him in a school with other autistic kids. This makes no sense to me. Now, let's say I was getting daily phone calls from his school...that would be a different story.
This part of the process must be so hard for families. I know it's hard for mine. Now all the layers and layers of parent support fliers piled onto a cork board at the doctor's office make sense. This is so overwhelming. Emotionally, of course. But right now the harder part is the logistics and finances of it all. That special school has a special price tag. And it's too big for our meager income.
So, we fiddle and fumble about, and hope that we're not shortchanging Niko in the process.
1) 2 hours a week of occupational therapy
2) 2 hours a week of speech therapy
3) TWENTY hours a week of ABA (translation = putting Niko is special school)
Excessive much? I don't want to be that parent who's in denial, but I also think this is a bit much. Niko currently receives 1 hour/week of special skills training and 1/hour week of speech therapy (just started speech two weeks ago). The feedback from providers has been great. Niko is making progress. Niko is doing well at school. Why would I pull him from a place he enjoys, and where he is surrounded by typical role models and put him in a school with other autistic kids. This makes no sense to me. Now, let's say I was getting daily phone calls from his school...that would be a different story.
This part of the process must be so hard for families. I know it's hard for mine. Now all the layers and layers of parent support fliers piled onto a cork board at the doctor's office make sense. This is so overwhelming. Emotionally, of course. But right now the harder part is the logistics and finances of it all. That special school has a special price tag. And it's too big for our meager income.
So, we fiddle and fumble about, and hope that we're not shortchanging Niko in the process.
Saturday, March 16, 2013
Niko
My sweet boy. Mommy had a hard day. Today (March 8, 2013) was our big day with the big wig at the doctor's office. I'm not entirely sure why I'm surprised with the outcome, but I am. The doctor told me you have autism.
You are broken. Mommy's broken too. We're gonna get through this my sweet prince. I promise.
But I will hold on hope
And I won't let you choke
On the noose around your neck
And I'll find strength in pain
And I will change my ways
I'll know my name as it's called again
-Mumford and Sons
You are broken. Mommy's broken too. We're gonna get through this my sweet prince. I promise.
But I will hold on hope
And I won't let you choke
On the noose around your neck
And I'll find strength in pain
And I will change my ways
I'll know my name as it's called again
-Mumford and Sons
Friday, January 25, 2013
Because I Want To Remember
Whether it's because they were right or wrong, I want to remember what Niko was doing when he a wee 26 months old.
Observations from his mother:
1) Like Sami at this age, Niko has a growing fascination with trucks, trains and construction vehicles. I'd say his favorite is trains, specifically Thomas the Train. He watches those shows with the focus of a neurosurgeon. A friend gave him an awesome Thomas collection and he is bonkers about it.
2) Niko is able to say, "Mama, Da, Pa, Mimi, and My Mama" spontaneously. With prompting he approximates "truck, school bus". He's working on "all done", and it actually sounds like it. He can sign, "more, all done and milk". With prompting, he waves goodbye and blows kisses.
3) Niko is a huge cuddle bug. He gives hugs and kisses generously and loves to bump foreheads (learned from his Momo). He pinches noses like they're going out of style. He loves to point to body parts and grunt to signal you're supposed to tell him what it is. When asked he can point to his nose, cheeks, head, teeth, bellybutton, and feet (haven't worked on others).
4) Niko and Sami play well together. Sami is much more interested in him, but Niko will tolerate a game of chase or jump on the couch. Sami has a horrible habit of grabbing Niko by the head and twisting around like an alligator. This, of course, is a wee bit uncomfortable for Niko and he screeches like a prehistoric bird. This has no effect on Sam or her grip, so after yet another 'come to jesus' lecture she promises to be more gentle. This has yet to have the desired effect.
5) What else would a mom want to remember? His sweet feet and twisty toes. His tight hugs before I lay him down to bed. His big smile when I greet him in the morning. His drunk, zombie walk that reminds me of Johnny Depp in Pirates of the Caribbean. His slim frame. His thoughtful eyes. His love of books and stories. His sideways glance. Yes, I think that will do for now.
Observations from a clinician:
1) Niko started ECI services two weeks ago. He's slated to receive speech therapy once a week and special skills training once a week. The agency is between speech pathologists right now so only the special skills training has started.
2) I got a report from school today that the therapist recommended encouraging social interactions with the other kids. I'm totally for this, of course, but I guess their first attempt didn't go super great. It didn't go horribly, but anything other than perfect leaves me feeling like a total and utter failure. So, back to the pinching noses, since this is a favorite activity of Niko's, he was encouraged to pinch a peer's nose. After giving two kids a "talk to the hand" gesture, Niko grudgingly pinched a little girls nose. This was my pick up discussion with his teacher, whom I love. Why can't I freaking hear normal shit like, "Niko was so silly today. He danced all day. Spoke in full sentences...oh and I didn't know he could read. What a kid!". Instead, I hear about his progress tolerating his peers for seconds at a time. Please excuse my pity party.
3) Oh and now I hear that he's twirling at school. Next, I'm going to hear hand flapping, walking on his tip toes and fixating on trains. His little autism box is starting to fit him nicely.
4) Screw you. All of you.
Love,
Niko's mom
Observations from his mother:
1) Like Sami at this age, Niko has a growing fascination with trucks, trains and construction vehicles. I'd say his favorite is trains, specifically Thomas the Train. He watches those shows with the focus of a neurosurgeon. A friend gave him an awesome Thomas collection and he is bonkers about it.
2) Niko is able to say, "Mama, Da, Pa, Mimi, and My Mama" spontaneously. With prompting he approximates "truck, school bus". He's working on "all done", and it actually sounds like it. He can sign, "more, all done and milk". With prompting, he waves goodbye and blows kisses.
3) Niko is a huge cuddle bug. He gives hugs and kisses generously and loves to bump foreheads (learned from his Momo). He pinches noses like they're going out of style. He loves to point to body parts and grunt to signal you're supposed to tell him what it is. When asked he can point to his nose, cheeks, head, teeth, bellybutton, and feet (haven't worked on others).
4) Niko and Sami play well together. Sami is much more interested in him, but Niko will tolerate a game of chase or jump on the couch. Sami has a horrible habit of grabbing Niko by the head and twisting around like an alligator. This, of course, is a wee bit uncomfortable for Niko and he screeches like a prehistoric bird. This has no effect on Sam or her grip, so after yet another 'come to jesus' lecture she promises to be more gentle. This has yet to have the desired effect.
5) What else would a mom want to remember? His sweet feet and twisty toes. His tight hugs before I lay him down to bed. His big smile when I greet him in the morning. His drunk, zombie walk that reminds me of Johnny Depp in Pirates of the Caribbean. His slim frame. His thoughtful eyes. His love of books and stories. His sideways glance. Yes, I think that will do for now.
Observations from a clinician:
1) Niko started ECI services two weeks ago. He's slated to receive speech therapy once a week and special skills training once a week. The agency is between speech pathologists right now so only the special skills training has started.
2) I got a report from school today that the therapist recommended encouraging social interactions with the other kids. I'm totally for this, of course, but I guess their first attempt didn't go super great. It didn't go horribly, but anything other than perfect leaves me feeling like a total and utter failure. So, back to the pinching noses, since this is a favorite activity of Niko's, he was encouraged to pinch a peer's nose. After giving two kids a "talk to the hand" gesture, Niko grudgingly pinched a little girls nose. This was my pick up discussion with his teacher, whom I love. Why can't I freaking hear normal shit like, "Niko was so silly today. He danced all day. Spoke in full sentences...oh and I didn't know he could read. What a kid!". Instead, I hear about his progress tolerating his peers for seconds at a time. Please excuse my pity party.
3) Oh and now I hear that he's twirling at school. Next, I'm going to hear hand flapping, walking on his tip toes and fixating on trains. His little autism box is starting to fit him nicely.
4) Screw you. All of you.
Love,
Niko's mom
Wednesday, December 5, 2012
Comfortably Numb
It's really strange to hear your child is anything less than perfect. Strange to imagine what life would be like for him. Strange to imagine me saying, "he's autistic" when trying to help someone understand his unique behavior. And even more strange to imagine the perspective of the stranger, "Ohhhhhhh. Now I see".
Go away, shitty thoughts.
And here's the zinger!! I did everything in my power to NOT have autistic kids. Yep. I planned it out. I could have written a book, "Common pitfalls. A guide to an Autism free pregnancy". I ate all organic shit. I avoided any and all medications. I planned on a natural pregnancy (who knows what that crazy pitocin does...the incidence of Autism did seem to coincide with the increase in epidurals and c-sections...there of course is no medical research supporting any of this). I didn't allow the immunization at the hospital AND I spaced out all their immunizations. So, screw you universe. I guess I could have eaten absolutely anything I wanted, had a pain-free labor and delivery AND given all those stupid shots at once.
I can't worry about his future too much because I will drive myself crazy. And I still don't think he's autistic. I really do think he is going to be fine. So, what now? Well, today I made an appointment for a speech evaluation. I'm working on "floortime" stuff, which is basically just sitting with him and encouraging him to interact with me (which he does already). I'm hopeful. Hopeful that he will be just fine. That he will start talking and all this will fade away. That I can tell stores about how everyone thought he was autistic when he was two years old. And as a successful adult Niko will say, "Mom, why do you tell that story all the time!?!?!?!". So hopeful....
Go away, shitty thoughts.
And here's the zinger!! I did everything in my power to NOT have autistic kids. Yep. I planned it out. I could have written a book, "Common pitfalls. A guide to an Autism free pregnancy". I ate all organic shit. I avoided any and all medications. I planned on a natural pregnancy (who knows what that crazy pitocin does...the incidence of Autism did seem to coincide with the increase in epidurals and c-sections...there of course is no medical research supporting any of this). I didn't allow the immunization at the hospital AND I spaced out all their immunizations. So, screw you universe. I guess I could have eaten absolutely anything I wanted, had a pain-free labor and delivery AND given all those stupid shots at once.
I can't worry about his future too much because I will drive myself crazy. And I still don't think he's autistic. I really do think he is going to be fine. So, what now? Well, today I made an appointment for a speech evaluation. I'm working on "floortime" stuff, which is basically just sitting with him and encouraging him to interact with me (which he does already). I'm hopeful. Hopeful that he will be just fine. That he will start talking and all this will fade away. That I can tell stores about how everyone thought he was autistic when he was two years old. And as a successful adult Niko will say, "Mom, why do you tell that story all the time!?!?!?!". So hopeful....
It's all fun and games until someone ends up Autistic
Warning - some strong language
I know I've joked around a lot about my son seeing a doctor who specializes Autism. His first visit went ok. Concerns about speech and language. No biggie. Didn't even recommend formal therapy, just a home program called "Talk To Me More", which is a little off-putting because the name itself suggests that I don't talk to my child enough. So, I did all the things they asked and we went back for a 3 month check up. This one didn't go as well. We went from a "very low level of concern" to things that were "very concerning". Some excerpts from the appointment that play in my head over and over again:
Does he do this a lot at home??? (insert a very concerned clinician....writing furiously after I say no)
Can he do these activities at home? (insert a very annoyed mom who does not set up testing scenarios at home)
He exhibits fleeting eye contact.
He gets mad so easily. He can't regulate his emotions.
Does he have difficulties with transitions?
These things are all components of THIS.
So, I finally ask, "what is THIS"? Her reply, "well, everyone nowadays is concerned with Autism".
For some reason I felt strangely calm. I guess I've just been waiting for someone to say it. To stop skirting the issue and just tell me what they're thinking. I left feeling ok. But, in typical Michelle fashion, I starting ruminating about it. And I've found myself teetering between two states.
1) Proactive, early intervention outcomes Mom
2) Conspiracy theorist, you can go fuck yourself Mom
Excuse the language. I'm not censoring.
I know I've joked around a lot about my son seeing a doctor who specializes Autism. His first visit went ok. Concerns about speech and language. No biggie. Didn't even recommend formal therapy, just a home program called "Talk To Me More", which is a little off-putting because the name itself suggests that I don't talk to my child enough. So, I did all the things they asked and we went back for a 3 month check up. This one didn't go as well. We went from a "very low level of concern" to things that were "very concerning". Some excerpts from the appointment that play in my head over and over again:
Does he do this a lot at home??? (insert a very concerned clinician....writing furiously after I say no)
Can he do these activities at home? (insert a very annoyed mom who does not set up testing scenarios at home)
He exhibits fleeting eye contact.
He gets mad so easily. He can't regulate his emotions.
Does he have difficulties with transitions?
These things are all components of THIS.
So, I finally ask, "what is THIS"? Her reply, "well, everyone nowadays is concerned with Autism".
For some reason I felt strangely calm. I guess I've just been waiting for someone to say it. To stop skirting the issue and just tell me what they're thinking. I left feeling ok. But, in typical Michelle fashion, I starting ruminating about it. And I've found myself teetering between two states.
1) Proactive, early intervention outcomes Mom
2) Conspiracy theorist, you can go fuck yourself Mom
Excuse the language. I'm not censoring.
Thursday, November 8, 2012
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