Meet Myles -- and grab a tissue! I am in awe...he reminds me very much of our Jack Riley!
Thursday, February 28, 2008
Tuesday, February 26, 2008
A Really Looooooong Week!!!
We have major meetings/appointments all week.
Last night we had Kindergarten registration -- a ton of paperwork to enjoy...
The entire meeting last night was held for the parents of all kindergarten aged kids. It really left me extremely sad at the end, knowing none of it really pertained to Jack. They talked about kindergarten readiness and how exciting a time it is, and how we'd get to practice a bus ride with the kids....all of it was like going on a really great job interview and at employee orientation getting told you weren't hired...but you still had to sit and listen to what everyone else was going to be doing and enjoying. Now I know Jack is delayed, but to see the smiles on all of the parents faces when they talked about learning to read, and all of the other kindergarten milestones, my heart broke. Jack is not anywhere near what the other kids are...and it really, really hit me last night.
Today is the IEP meeting at Jack's current school. I am prepared with tons of notes (thanks to some brainstorming with friends) and my laptop with video of Jack doing his cards (labeling, receptive, and spontaneous speech).
Wed is neuro, thurs is an intake for wraparound services (autism support) and friday Morgan has her RSV shots...
Someone come and check on me please....make sure I am still standing at the end of all of this! lol
Also, please wish me luck today!!
PS -- don't ya just wanna cuddle with these two????
Last night we had Kindergarten registration -- a ton of paperwork to enjoy...
The entire meeting last night was held for the parents of all kindergarten aged kids. It really left me extremely sad at the end, knowing none of it really pertained to Jack. They talked about kindergarten readiness and how exciting a time it is, and how we'd get to practice a bus ride with the kids....all of it was like going on a really great job interview and at employee orientation getting told you weren't hired...but you still had to sit and listen to what everyone else was going to be doing and enjoying. Now I know Jack is delayed, but to see the smiles on all of the parents faces when they talked about learning to read, and all of the other kindergarten milestones, my heart broke. Jack is not anywhere near what the other kids are...and it really, really hit me last night.
Today is the IEP meeting at Jack's current school. I am prepared with tons of notes (thanks to some brainstorming with friends) and my laptop with video of Jack doing his cards (labeling, receptive, and spontaneous speech).
Wed is neuro, thurs is an intake for wraparound services (autism support) and friday Morgan has her RSV shots...
Someone come and check on me please....make sure I am still standing at the end of all of this! lol
Also, please wish me luck today!!
PS -- don't ya just wanna cuddle with these two????
Saturday, February 23, 2008
up...Up....UP!!!!!
Two kids -- two different milestones...one happy ma ma (although with a few gray haris)!
I find Morgan doing this.....EVERYWHERE! GOOD JOB MORGAN!!!
Now here's Jack -- what a major feat!!!!!!! WAY TO GO JACK!
I find Morgan doing this.....EVERYWHERE! GOOD JOB MORGAN!!!
Now here's Jack -- what a major feat!!!!!!! WAY TO GO JACK!
Thursday, February 21, 2008
Getting it out...a new diagnosis, full disclosure
I wrote the following to my specialparent.org friends on December 10th, 2007 upon returning from the neuropsychological evaluation at the hospital. I have learned more since then and even have different thoughts/feeings now but I wanted to let you know how I was feeling in the moment.
_________________
December 10th, 2007
We just returned from the neuro-psych eval and I am a little overwhelmed.
Jack didn't cooperate for much of the testing but did well with certain activities. The primary way of getting information was through parental interview. The Dr. was fabulous. I immediately knew she was listening and completely and totally validated my concerns and LISTENED. We were with her for about two hours and then we took a break while she calculated the test results. She did the WPPSI - 3 and the EIDP language tests. She also went through a lot of "check lists" about behavior (not cognitive based)...
Her findings were PDD-NOS -- on the autism spectrum. When we went through the checklist item by item after she mentioned PDD it clicked. It's like the list should have been called "Jack's List" instead of the Checklist for Autism in Young Children.
I can't possibly type the whole list, but I will briefly type which ones Jack displays...
Problems with Social Interaction:
Socially indiscriminate behavior (touching people, looking for tattoos on everyone -- even if he doesn't know them well, playing with classmates belts, hair and getting right up into strangers' faces).
Perservation:
Narrow or unusual range of interests and play behaviors, obsessive preoccupations, attachment to and holding particular objects (he always has a brush in his hand, could play endlessly with the string to our vertical blinds), among other things.
Stereotyped and repetitive play (opening and closing, etc) -- he opens and closes things over and over, has a lot of other things he could do over and over again.
Upset with change/transitions (absolutely)
Somatosensory Disturbance:
Unresponsive at times to verbal input (just stares off, not seizure related, even when I KNOW he KNOWS what I said.)
Hypersensitivity to some sounds (vacuum, lawnmower, etc.)
Distress with crowds and commotion (tunes out and doesn't look/act like himself)
Fascination with visual stimuli (he likes fans, lights, etc.)
High tolerance for pain (probably a preemie thing) but he can fall and not shed a tear.
Sleep disturbance (finally better, but only recently)
Feeding disorder (again, cp/preemie thing)
Atypical Developmental Pattern:
Expressive language disorder -- limited speech, limited reciprocal conversational speech (he expresses his needs but doesn't hold a conversation, he is unable to answer yes or no questions, only uses no as a refusal.)
Atypical vocalizations (screeches with delight, etc.)
Splinter skills -- (he's advanced with his rote memory, very mechanically inclined but delayed severely in other areas.)
Mood Disturbance:
Tantrums, aggression, self-injurious behavior, upset by performance demands (no explaining needed)
Mood changes suddenly
Difficulty expressing emotions
Problems with Attention and Safety:
Selective attention, situational over-activity (hyper-focused on things interesting to him -- totally tunes out and is inattentive other times)
Limited safety awareness
Like I said, this is just a small description of the items checked off -- but enough to know it truly affects all areas of development.
She explained how she has a niece very similar to Jack (2 lbs at birth, bilateral brain bleeds, cp, triplegia, delayed developmentally) and how even though they are very similar in their cognitive and physical skill set, she does not have the behavior symptoms Jack has. I was very confused at first how these symptoms were different than neurological damage or developmental delays. When she explained how you can be delayed and still not have the behavioral issues Jack is having.
We talked about Jack's developmental delays and she gave me Jack's IQ score. He falls in the Mild Mental Retardation category with an IQ of 60. She said in the early years of school he should do well because of his rote memory skills -- but in later grades when teaching and learning relies more on conceptual information he may have trouble. I am not surprised, but I never really ever wanted anyone to tell me this. He has strengths and I know that -- he has areas in which he is very delayed and I know that as well. This is the ugliest and hardest label to come to terms with. I don't know why, it just is.
She is going to help us set up ABA therapy for (hopefully) 20 hours a week at school and the remainder at home. I know very little about this, but from what she told me it sounds like a really, really good situation for Jack.
I am sure I am leaving out a ton of information but I had to get some of this out before I forgot. I am not posting on Jack's blog or really saying anything to family until I can digest this information myself. I told Jason but we didn't get to talk long because he had to work today. I didn't say anything to my mom (she was watching Morgan) -- I just told her we did a lot of tests and we'd have the report in a few days. I know it will be hard on our parents to hear this information. Hell, it's hard on me and I can't be strong for anyone else right now.
Thanks for reading -- if I didn't have you guys I would seriously not know what to do. You've been here through everything -- the NICU, the CP diagnosis, the emergencies, but also the best times -- Jack's first word, his first steps with his walker...I am the mommy I am today because of my friends here. I will never, ever forget that.
Thanks again for everything...love you guys!
_________________
So why now? I feel like if I don't share this part of our world I am not being honest. I also feel ready to answer questions and talk about it -- more so than around the holidays. I am also going through a tough time setting up wraparound services (TSS support, ABA therapy, etc.) and getting everything I feel he will need in order to present at his IEP meeting next week. There are decisions about elementary school that are so BIG I am not even sure how to wrap my mind around it...
There are tough decisions to make and I need YOU as my ever trustworthy sounding board! So there...that's the past few months in just one post.
_________________
December 10th, 2007
We just returned from the neuro-psych eval and I am a little overwhelmed.
Jack didn't cooperate for much of the testing but did well with certain activities. The primary way of getting information was through parental interview. The Dr. was fabulous. I immediately knew she was listening and completely and totally validated my concerns and LISTENED. We were with her for about two hours and then we took a break while she calculated the test results. She did the WPPSI - 3 and the EIDP language tests. She also went through a lot of "check lists" about behavior (not cognitive based)...
Her findings were PDD-NOS -- on the autism spectrum. When we went through the checklist item by item after she mentioned PDD it clicked. It's like the list should have been called "Jack's List" instead of the Checklist for Autism in Young Children.
I can't possibly type the whole list, but I will briefly type which ones Jack displays...
Problems with Social Interaction:
Socially indiscriminate behavior (touching people, looking for tattoos on everyone -- even if he doesn't know them well, playing with classmates belts, hair and getting right up into strangers' faces).
Perservation:
Narrow or unusual range of interests and play behaviors, obsessive preoccupations, attachment to and holding particular objects (he always has a brush in his hand, could play endlessly with the string to our vertical blinds), among other things.
Stereotyped and repetitive play (opening and closing, etc) -- he opens and closes things over and over, has a lot of other things he could do over and over again.
Upset with change/transitions (absolutely)
Somatosensory Disturbance:
Unresponsive at times to verbal input (just stares off, not seizure related, even when I KNOW he KNOWS what I said.)
Hypersensitivity to some sounds (vacuum, lawnmower, etc.)
Distress with crowds and commotion (tunes out and doesn't look/act like himself)
Fascination with visual stimuli (he likes fans, lights, etc.)
High tolerance for pain (probably a preemie thing) but he can fall and not shed a tear.
Sleep disturbance (finally better, but only recently)
Feeding disorder (again, cp/preemie thing)
Atypical Developmental Pattern:
Expressive language disorder -- limited speech, limited reciprocal conversational speech (he expresses his needs but doesn't hold a conversation, he is unable to answer yes or no questions, only uses no as a refusal.)
Atypical vocalizations (screeches with delight, etc.)
Splinter skills -- (he's advanced with his rote memory, very mechanically inclined but delayed severely in other areas.)
Mood Disturbance:
Tantrums, aggression, self-injurious behavior, upset by performance demands (no explaining needed)
Mood changes suddenly
Difficulty expressing emotions
Problems with Attention and Safety:
Selective attention, situational over-activity (hyper-focused on things interesting to him -- totally tunes out and is inattentive other times)
Limited safety awareness
Like I said, this is just a small description of the items checked off -- but enough to know it truly affects all areas of development.
She explained how she has a niece very similar to Jack (2 lbs at birth, bilateral brain bleeds, cp, triplegia, delayed developmentally) and how even though they are very similar in their cognitive and physical skill set, she does not have the behavior symptoms Jack has. I was very confused at first how these symptoms were different than neurological damage or developmental delays. When she explained how you can be delayed and still not have the behavioral issues Jack is having.
We talked about Jack's developmental delays and she gave me Jack's IQ score. He falls in the Mild Mental Retardation category with an IQ of 60. She said in the early years of school he should do well because of his rote memory skills -- but in later grades when teaching and learning relies more on conceptual information he may have trouble. I am not surprised, but I never really ever wanted anyone to tell me this. He has strengths and I know that -- he has areas in which he is very delayed and I know that as well. This is the ugliest and hardest label to come to terms with. I don't know why, it just is.
She is going to help us set up ABA therapy for (hopefully) 20 hours a week at school and the remainder at home. I know very little about this, but from what she told me it sounds like a really, really good situation for Jack.
I am sure I am leaving out a ton of information but I had to get some of this out before I forgot. I am not posting on Jack's blog or really saying anything to family until I can digest this information myself. I told Jason but we didn't get to talk long because he had to work today. I didn't say anything to my mom (she was watching Morgan) -- I just told her we did a lot of tests and we'd have the report in a few days. I know it will be hard on our parents to hear this information. Hell, it's hard on me and I can't be strong for anyone else right now.
Thanks for reading -- if I didn't have you guys I would seriously not know what to do. You've been here through everything -- the NICU, the CP diagnosis, the emergencies, but also the best times -- Jack's first word, his first steps with his walker...I am the mommy I am today because of my friends here. I will never, ever forget that.
Thanks again for everything...love you guys!
_________________
So why now? I feel like if I don't share this part of our world I am not being honest. I also feel ready to answer questions and talk about it -- more so than around the holidays. I am also going through a tough time setting up wraparound services (TSS support, ABA therapy, etc.) and getting everything I feel he will need in order to present at his IEP meeting next week. There are decisions about elementary school that are so BIG I am not even sure how to wrap my mind around it...
There are tough decisions to make and I need YOU as my ever trustworthy sounding board! So there...that's the past few months in just one post.
Thursday, February 14, 2008
Happy Valentine's Day!
Today is also our 7th wedding anniversary...
Wow, so what's up with everyone? I feel so very out of the blogging loop. I am trying to catch up! I am excited to announce the arrival of little Tori -- check out Doni's Blog! Congratulations guys!!!
Jack and Morgan were on the mend -- but I believe Morgan is starting with another cold. Between illness and bad weather Jack went to school once in almost 3 weeks! His IEP meeting had to be rescheduled (due to weather) and they are working on another date and time.
Morgan is REALLY growing and changing! She's finger feeding small bits of puffed rice cereal and is pulling to STAND on everything! She's babbling all the time and is such a joy...she's my precious girl. Jack has taken it upon himself to tell Morgan "NO" when she's trying to turn knobs on the electronics or putting her mouth on the edge of the carpet. He looks at her and sternly says "Mi Mi NO....no, no, nooooo!" Jack is really growing up too. He's really patient with Morgan (or as he calls her Mi Mi) and lets her have turns with his toys.
I wanted to show you the keyboard I got for Jack -- it was 19 bucks at Staples and is made by Crayola.
He plays keyboard-o-rama on Sesame Street's website and we've been working on our letters. I like the keyboard a lot the keys are easy to push and the letters easy to read.
I hope you're all having a good week!!!
Thursday, February 07, 2008
Locks of Love
It was for a good cause...
My 11 inch ponytail went to Locks of Love!
It feels so strange! I love it!
BEFORE:
My 11 inch ponytail went to Locks of Love!
It feels so strange! I love it!
BEFORE:
AFTER:
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