I took a video thursday to try to illustrate how worked up and anxious Jake has been lately. This isn't a tantrum, this is how he has been acting at home for a couple of weeks. The high pitched "uhhh uhhh uhhhh" was pretty much a constant. Just a little ball of nerves. Everything is "scary." I know this is a long one, and hard to watch. A couple of things to notice: His unusual language pattern "No broke on the school!" (I'm going to break the school? Maybe?) He makes an "explosion" sound and sign when he gets worked up talking about school to demonstrate how much he doesn't want to go to school. Random sentences "Want some helicopter." Oh, and he has been eating Mommy's dark chocolate hence the Joker mouth.
Maybe that helps to show why I haven't been able to blog lately... I've just been a wreck hoping that eventually SOMETHING would make him happy again. Sometimes I forget that he has these spells when he's trying to work through something new. The past few days he has made a 180 degree turnaround and has been happier, has begun to talk more, and although he has had some tantrums (what almost 5 year old doesn't), those tantrums have a beginning, and so thankfully, an end. I didn't know if I could endure another rainy day stuck indoors, but here is how most of the day was spent:
At least he's quiet.
Deep cleansing breath.
Sunday, March 21, 2010
Thursday, March 18, 2010
I've been run down...
I can't believe that its been over a month since I blogged. My dad actually wrote me an email and asked if I had moved my webpage. Honestly, facebook is fun, and I love posting about our antics and having our experience validated by my friends, but I post the less exciting details here. I don't even know what to say about what has been going on this month, its been hectic, there is no schedule,....
Manny has been going to therapy with Cindy on Friday mornings. She wants to work with him with weighted clothes, pressure suits and other things that I am only barely beginning to understand. I have had experience with restless leg syndrome, and I understand the way that dogs experience the world. I try my best to try to understand how my children must see the world. I am capable of sewing some of the therapy equipment that is suggested to me, however I am having a really hard time motivating myself to sew some new items to try to increase sales, since business is at a standstill. It is hard to explain, but I really want several DAYS to lock myself into the sewing room and create, sew awesome backpacks and messengers that people will buy, pants for my kids, a dress for me, a pair of shorts for Steve for his birthday that has come and gone.... but instead my time is cut into one or two hour pieces, interrupted by dog grooming clients that barely pay me for my time, my late obsession with getting fit and healthy (just another constant source of guilt), laundry that is getting behind .. and scattered amongst days. I shouldn't really complain and act like an uptight artist type.. but it is still frustrating.. the job that used to be a "real job" has turned into a big fat flop... it will get better, I'm sure?
Gosh, that last paragraph describes exactly why I have avoided blogging for so long. I am losing my ability to organize my thoughts, I think.
Please enjoy this video of a talk given by the great autistic scholar, Temple Grandin. I can't imagine, if you know and love Jake, or me, for that matter, this video should make you go "oooooh.. yeah.. now I get it" :
http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html
Manny still wasn't sleeping, as of 2 weeks ago, more than a few hours per night. It was enough to make everyone insane. Its really hard to explain to anyone what it is like to go without "real" sleep for 2 or 3 years. Most people think that you are exxaggerating. Those who don't think that you are exaggerating think that you aren't doing it right,a and if you'd just impart some harsher sleep tactics..... And only the most special of people are willing to offer to help.. on a weeknight.. just cause... (thanks, y'all).
One night Manny woke up at 11:30 Pm and didn't go back to sleep for 14 hours (after waking us up for 3 consecutive nights after a few hours of sleep). Jake got up at 4:30 AM and due to a frustrated mommy and a badly timed JERK to a blanket that Jake was standing/pulling on, Jake fell and his teeth hit the hardwood floor and his two front teeth ended up busted loose. I"m not going to talk a lot more about this incident.. because it was horrible.. probably the worst moment in my entire life. I need to push the keyboard away for just a few minutes so I can cry....
Jake completely blames me for this incident, because I was obviously angry when it happened... though I never thought he'd hit the floor if I jerked the blanket. He shows many signs that he is traumatized. Just like when I tried to send him to preschool when he was 3, he has decided that he MUST wear a hat, even when he's asleep. One of his teeth has nerve damage so it is dying. The teachers at school have showed a concern so I have taken him by Dr. Patterson's office to see if there's anything to be done for his dead tooth. No, it will be fine.. many children fall and bust their teeth... its a common injury.....
The incident has opened a new chapter in my relationship with my children. I must learn to keep my temper, no matter how it is challenged, move physically slower when I am angry, and try to accept what is happening in my life, even if it means less sleep.. much less sleep. Jake was already having a "spell" of unusual and really neurotic behaviour before this incident.. it couldn't have come at a worse time and I can't stop blaming msyelf.
At the advice of other parents, literature, and Manny's therapist, we have been giving him melatonin supplements. The change is so insanely dramatic I am almost afraid to post it here. With 3-4 mg of melatonin, Manny tends to sleep through the night from around 9 PM until 6 AM (give or take).
We barely know what to do when we wake up at 5 or 6 AM and he is still asleep...
I anguished over the decision to finally try to medicate him, even with melatonin.. which is a STRONG drug to me (makes me disoriented/sleepwalk, with just 1 MG). Finally, out of desperation, I gave him 3 MG of sublingual melatonin. He slept all night, until 6 AM.. a first. He had only been sleeping from about 8 or 9 until 2 or 3 AM consistently.
I was hesistant to admit to "conventional" practicioners that I was giving him melatonin.. I usually get chastised for pretty much anything I do.
Cindy, as usual, came to my rescue and agreed that a couple of weeks of melatonin therapy might jump-start his own pineal gland. I also read buku studies showing that children with NF1 may not produce melatonin all night.. and have a problem with night-waking. Also..the pineal gland is part of the thalmus.. and located very close to Manny's tumor.
While visiting Greenlife on Steve's birthday celebration (I think he had fun) to pick up a new supply of melatonin.. we went to check out at the check-out stand. The young lady running the register beeped our melatonin and said "be careful with that stuff.. its serious medicine."
"umm.. yeah." I said, kinda stunned. "I can't really take it" (i can't!)
she said "well, if you take it a lot, you become dependent on it, and your brain can't make your own melatonin, just be careful with it.. i'm not a fan."
I anguish. I lay awake. I can barely stand myself I'm so worked up over whether or not I'm making the right decisions for my children. If you run the checkout counter of a health food store... Please shut up.
Anne Monk, the special instructor from Babies Can't Wait works 1 day per week with Many at his preschool. Steve (and I) are always really happy when Manny says "juice" or "cheese"... he hasn't said many more words than that. I try.. i swear I try to stay positive. I think that Manny may obtain a pretty good vocabulary of nouns, however.. I am not sitting here thinking that he'll snap out of it, and ever become an adult who isn't a special needs person. Eveyone gets really angry at me for thinking that.
Steve and I have been very very lucky to have been able to attend several music events: Yonder at the Tabernacle, Further at the Tabernacle, I went alone/with friends to see Trey at the Tabernacle, Steve saw Sam Bush at Rhytmn and Brews, and we both caught Cornmeal this past weekend at rhythm and Brews.
Steve's birthday was yesterday on St. Patty's, and he wanted to go out. Unfortunately he was confined to the hours of 2 PM until 6 PM for his party. We lucked out, and after a wonderful lunch at Terminal Brewhouse we headed to Greenlife for whisky tasting on to St. Elmo for a crazy and impromptu parade and then onto the Moccasin Bend Brewhouse. I think he enjoyed himself :)
Last year we had a rockin cool time at Jake's birthday party. I am hesistant to call this years "Spring Thingamafling" a birthday party, but it should be a fun time. Don't tell anyone, but SLIM PICKINS! should be there. Start marking May 22 on your calendar.
Thats the best I can do to sum up a whole month :) Cheers.
Manny has been going to therapy with Cindy on Friday mornings. She wants to work with him with weighted clothes, pressure suits and other things that I am only barely beginning to understand. I have had experience with restless leg syndrome, and I understand the way that dogs experience the world. I try my best to try to understand how my children must see the world. I am capable of sewing some of the therapy equipment that is suggested to me, however I am having a really hard time motivating myself to sew some new items to try to increase sales, since business is at a standstill. It is hard to explain, but I really want several DAYS to lock myself into the sewing room and create, sew awesome backpacks and messengers that people will buy, pants for my kids, a dress for me, a pair of shorts for Steve for his birthday that has come and gone.... but instead my time is cut into one or two hour pieces, interrupted by dog grooming clients that barely pay me for my time, my late obsession with getting fit and healthy (just another constant source of guilt), laundry that is getting behind .. and scattered amongst days. I shouldn't really complain and act like an uptight artist type.. but it is still frustrating.. the job that used to be a "real job" has turned into a big fat flop... it will get better, I'm sure?
Gosh, that last paragraph describes exactly why I have avoided blogging for so long. I am losing my ability to organize my thoughts, I think.
Please enjoy this video of a talk given by the great autistic scholar, Temple Grandin. I can't imagine, if you know and love Jake, or me, for that matter, this video should make you go "oooooh.. yeah.. now I get it" :
http://www.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds.html
Manny still wasn't sleeping, as of 2 weeks ago, more than a few hours per night. It was enough to make everyone insane. Its really hard to explain to anyone what it is like to go without "real" sleep for 2 or 3 years. Most people think that you are exxaggerating. Those who don't think that you are exaggerating think that you aren't doing it right,a and if you'd just impart some harsher sleep tactics..... And only the most special of people are willing to offer to help.. on a weeknight.. just cause... (thanks, y'all).
One night Manny woke up at 11:30 Pm and didn't go back to sleep for 14 hours (after waking us up for 3 consecutive nights after a few hours of sleep). Jake got up at 4:30 AM and due to a frustrated mommy and a badly timed JERK to a blanket that Jake was standing/pulling on, Jake fell and his teeth hit the hardwood floor and his two front teeth ended up busted loose. I"m not going to talk a lot more about this incident.. because it was horrible.. probably the worst moment in my entire life. I need to push the keyboard away for just a few minutes so I can cry....
Jake completely blames me for this incident, because I was obviously angry when it happened... though I never thought he'd hit the floor if I jerked the blanket. He shows many signs that he is traumatized. Just like when I tried to send him to preschool when he was 3, he has decided that he MUST wear a hat, even when he's asleep. One of his teeth has nerve damage so it is dying. The teachers at school have showed a concern so I have taken him by Dr. Patterson's office to see if there's anything to be done for his dead tooth. No, it will be fine.. many children fall and bust their teeth... its a common injury.....
The incident has opened a new chapter in my relationship with my children. I must learn to keep my temper, no matter how it is challenged, move physically slower when I am angry, and try to accept what is happening in my life, even if it means less sleep.. much less sleep. Jake was already having a "spell" of unusual and really neurotic behaviour before this incident.. it couldn't have come at a worse time and I can't stop blaming msyelf.
At the advice of other parents, literature, and Manny's therapist, we have been giving him melatonin supplements. The change is so insanely dramatic I am almost afraid to post it here. With 3-4 mg of melatonin, Manny tends to sleep through the night from around 9 PM until 6 AM (give or take).
We barely know what to do when we wake up at 5 or 6 AM and he is still asleep...
I anguished over the decision to finally try to medicate him, even with melatonin.. which is a STRONG drug to me (makes me disoriented/sleepwalk, with just 1 MG). Finally, out of desperation, I gave him 3 MG of sublingual melatonin. He slept all night, until 6 AM.. a first. He had only been sleeping from about 8 or 9 until 2 or 3 AM consistently.
I was hesistant to admit to "conventional" practicioners that I was giving him melatonin.. I usually get chastised for pretty much anything I do.
Cindy, as usual, came to my rescue and agreed that a couple of weeks of melatonin therapy might jump-start his own pineal gland. I also read buku studies showing that children with NF1 may not produce melatonin all night.. and have a problem with night-waking. Also..the pineal gland is part of the thalmus.. and located very close to Manny's tumor.
While visiting Greenlife on Steve's birthday celebration (I think he had fun) to pick up a new supply of melatonin.. we went to check out at the check-out stand. The young lady running the register beeped our melatonin and said "be careful with that stuff.. its serious medicine."
"umm.. yeah." I said, kinda stunned. "I can't really take it" (i can't!)
she said "well, if you take it a lot, you become dependent on it, and your brain can't make your own melatonin, just be careful with it.. i'm not a fan."
I anguish. I lay awake. I can barely stand myself I'm so worked up over whether or not I'm making the right decisions for my children. If you run the checkout counter of a health food store... Please shut up.
Anne Monk, the special instructor from Babies Can't Wait works 1 day per week with Many at his preschool. Steve (and I) are always really happy when Manny says "juice" or "cheese"... he hasn't said many more words than that. I try.. i swear I try to stay positive. I think that Manny may obtain a pretty good vocabulary of nouns, however.. I am not sitting here thinking that he'll snap out of it, and ever become an adult who isn't a special needs person. Eveyone gets really angry at me for thinking that.
Steve and I have been very very lucky to have been able to attend several music events: Yonder at the Tabernacle, Further at the Tabernacle, I went alone/with friends to see Trey at the Tabernacle, Steve saw Sam Bush at Rhytmn and Brews, and we both caught Cornmeal this past weekend at rhythm and Brews.
Steve's birthday was yesterday on St. Patty's, and he wanted to go out. Unfortunately he was confined to the hours of 2 PM until 6 PM for his party. We lucked out, and after a wonderful lunch at Terminal Brewhouse we headed to Greenlife for whisky tasting on to St. Elmo for a crazy and impromptu parade and then onto the Moccasin Bend Brewhouse. I think he enjoyed himself :)
Last year we had a rockin cool time at Jake's birthday party. I am hesistant to call this years "Spring Thingamafling" a birthday party, but it should be a fun time. Don't tell anyone, but SLIM PICKINS! should be there. Start marking May 22 on your calendar.
Thats the best I can do to sum up a whole month :) Cheers.
Thursday, February 11, 2010
Another BCW meeting
Yesterday Ellen (service coordinator) and Susan ("former" OT) came to our house for another meeting to determine what services Manny will get from Babies Can't wait and for an evaluation. Ellen said that an evaluation is needed any time that a child shows regression. I opted to decline Susan's services. From what I can tell, she comes to Dalton twice per month, on two days that she determines a day or two in advance, and if that doesn't fit within the parent's schedule, then they must wait another two weeks. She doesn't come any other times. Unfortunately, she's the only OT that the entire area has, and that area is large. I was also offered once-per-week OT in a location a little over one hour away. I also declined that. They were able to offer a special instructor, a special education teacher in our area for over 30 years. I can't remember her first name at the moment. Her schedule is full until March, but after that she will be able to see Manny once per week either at school or here at my house. She is local (just up the road, actually), and it will be suggested to her that, in the event of a cancellation, she try to see Manny twice per week.
I'm sure that Susan is a fine OT, but with her strict schedule and my need for advanced notice, it just wasn't working out. She gave me some ideas to work with Manny. They were great ideas, but seemed optimistic of his developmental level.
Just a few hours after our meeting ended, the special instructor called to let me know that she was excited to see Manny, that she was on board and "I WILL be there." I can only hope that she really means what she says. Meanwhile, Manny will begin to see Cindy next week. Things are "almost" happening. I try to be optimistic.
I went to Manny's preschool Valentine's day party today. I had flashbacks to Jake's Valentine's party, which took place in the same room with Ms. Dixcee. That was my first HUGE wake-up call that Jake was nowhere NEAR the other kids on a developmental level, but I was a first-time mom, and trying to make sense of it. With Manny, I know, and it is inherently more obvious. Manny is so much more behind than Jake was. I'm more prepared, but it doesn't hurt less. The other children are sitting and eating and asking respectfully for more juice or chips, while Manny smears food everywhere, and spits out much of what he puts in his mouth. A substitute aid, a grandmother, was hovering over Manny (even though I was RIGHT there sitting with him) and worried aloud if he would choke on an apple slice (not a stretch at all). Manny can't drink out of a juice box efficiently. He doesn't care about the packages put in front of him as valentines gifts, even though they contain candies and toys. Compared to the other children, he's just not there.. he's an infant who can walk.. at least pretty well.
I asked the teachers point-blank if he is a distraction in class, or just too much trouble. I thanked them profusely for taking care of him, and let them know that I know that he requires extra care, and how much it means to him to be around typical kids. His teacher went on and on about how they'd absolutely LOVE to have the special instructor or OT come to class and give them ideas for things that they can do. We had this discussion openly in front of all of the other parents. They just sat quietly. None of the other parents spoke to me. I don't really blame them. Not only do I look different (what's new?), but I have the different child. It must be as uncomfortable for them as it is for me in those moments.
Jake is doing great at school. His teachers send me his art and writing and I chuckle because I have pages and pages of these at home, and don't even get me started on the doodle pad entries I wish I could save.
Jake has an axillary freckle (cafe au lait spot under his armpit) which is a diagnostic element of NF1. I noticed it around the time Manny was diagnosed. Since then he has only recently developed what looks like a quarter sized cafe-au-lait spot in his underwear area. Again, the placement and development is consistent with NF1. I should probably burn my computer, or at least disable google.
I'm sure that Susan is a fine OT, but with her strict schedule and my need for advanced notice, it just wasn't working out. She gave me some ideas to work with Manny. They were great ideas, but seemed optimistic of his developmental level.
Just a few hours after our meeting ended, the special instructor called to let me know that she was excited to see Manny, that she was on board and "I WILL be there." I can only hope that she really means what she says. Meanwhile, Manny will begin to see Cindy next week. Things are "almost" happening. I try to be optimistic.
I went to Manny's preschool Valentine's day party today. I had flashbacks to Jake's Valentine's party, which took place in the same room with Ms. Dixcee. That was my first HUGE wake-up call that Jake was nowhere NEAR the other kids on a developmental level, but I was a first-time mom, and trying to make sense of it. With Manny, I know, and it is inherently more obvious. Manny is so much more behind than Jake was. I'm more prepared, but it doesn't hurt less. The other children are sitting and eating and asking respectfully for more juice or chips, while Manny smears food everywhere, and spits out much of what he puts in his mouth. A substitute aid, a grandmother, was hovering over Manny (even though I was RIGHT there sitting with him) and worried aloud if he would choke on an apple slice (not a stretch at all). Manny can't drink out of a juice box efficiently. He doesn't care about the packages put in front of him as valentines gifts, even though they contain candies and toys. Compared to the other children, he's just not there.. he's an infant who can walk.. at least pretty well.
I asked the teachers point-blank if he is a distraction in class, or just too much trouble. I thanked them profusely for taking care of him, and let them know that I know that he requires extra care, and how much it means to him to be around typical kids. His teacher went on and on about how they'd absolutely LOVE to have the special instructor or OT come to class and give them ideas for things that they can do. We had this discussion openly in front of all of the other parents. They just sat quietly. None of the other parents spoke to me. I don't really blame them. Not only do I look different (what's new?), but I have the different child. It must be as uncomfortable for them as it is for me in those moments.
Jake is doing great at school. His teachers send me his art and writing and I chuckle because I have pages and pages of these at home, and don't even get me started on the doodle pad entries I wish I could save.
Jake has an axillary freckle (cafe au lait spot under his armpit) which is a diagnostic element of NF1. I noticed it around the time Manny was diagnosed. Since then he has only recently developed what looks like a quarter sized cafe-au-lait spot in his underwear area. Again, the placement and development is consistent with NF1. I should probably burn my computer, or at least disable google.
Wednesday, February 3, 2010
OT Evaluation with Cindy
Because I made Manny's appointment at 11:30, I let Cindy know, upon arrival, that I would need to leave right at or a few minutes before 12:30, so I could be sure to be home when Jake got off of the bus. She threw some paperwork at me, and I worked on that while she filled out an assessment, asked questions, watched Manny, and we talked. Pretty soon she said "I will cut to the chase, I know you well and feel like we can just jump in here."
(Lay it on me, I'm more than ready.)
According to Cindy's assessment, Manny's motor and adaptive skills are quite delayed, but she feels that at least he is showing improvement. However, his Social, Communication/Speech and Cognitive skills are next to non-existent. Not a surprise, but as always, hard to hear.
(Great, fine, OK. What do we do? Give me a plan, give me hope, we have 20 more minutes, you can do it.)
Cindy says that we need to gang up on Manny from every side, with intense therapy. She has offered, because of my schedule and hers, to come in on what is usually her day off, Friday, and see Manny at 9:30 in the morning every week. She also suggested that I ask Babies Can't wait if we can get a special instructor 2 days per week, but at least one day, and that instructor can either come to the house, or go to his preschool. Either way, she would like for her or someone to instruct his preschool teachers with some activities that will engage him, at least for a little while during the day. Also, since Steve's parents spend many hours with him every week, she would like to see them bring him to therapy sessions at least a little so that they can also learn specific activities that will engage him.
(Ok! Awesome! We have a plan, with a whole 5 minutes left! What activities.. I'll start today!)
Well, it was only an hour, and an assessment. Cindy doesn't know what to do with him either.. yet. What does Manny like? I don't know... chewing on things? Laying on the floor? Riding in the carrier? She says we may even need to build on some of those things.. but we're going to figure it out. She said we would. I came home and sent some photos for printing for a picture board for his favorite foods. I actually feel like I have someone on my team who WILL figure it out.
Cindy asked me an interesting question when we were having the discussion about finding things he was interested in. "What is the main difference you see between Manny and Jake at this point?"
Oh gosh, well.. Jake was.. for one thing, talking. At 2 and a half he was ONLY labeling, but had a vocabulary of a zillion words. He LOVED to label. He was good at drawing, he suddenly got interested in sign language, and that was a whole NEW way to label. It wasn't rocket science, I just took the things that he was good at, the things he was interested in and I built upon that. So.. lets learn sign language for emotions, lets label emotions, and actions, and abstract ideas!
Manny doesn't have these interests, or skills. He's not "good at" anything. I have no idea where to start. I'm twice as terrified for him, and only half as hopeful, at least on my own. Jake, his Dad and I did a decent job on our own, but Jake showed us the way. We need a little more guidance when it comes to Manny, and a LOT more help from our support team.
And we have it! When I got home I called Steve's mother to ask her if she could help me with the kids tomorrow afternoon. I didn't even get a hello out before I was asked "How did the appointment go!?" I keep forgetting that she also had a special needs child who required a lot of help and extra attention, and doesn't resist talking about the "uncomfortable" subject of her grandkids. She listened to what I had to say and asked if Manny was going on Friday. Oh Jeez.. no.. I have 8 dogs lined up for Friday.. there's no way, I don't even know if I could even get in TOUCH with all of those people in time, besides, that's my only day this week to make money. "Well, don't turn her down! I'll take him to Cindy if he can get an appointment, and then take him home with me so you can do the dogs. I'm taking Pops too, he's going to go to some sessions with Cindy too, because Manny likes him, and listens to him."
(Really? Am I dreaming? I can have an iota of balance in my life, AND Manny will get the help he needs? Its not going to rest on JUST Steve and me? "Grateful" doesn't begin to describe how I feel towards them at this point. They just WANT to help?!)
Later I returned a call from Ellen, the Service Coordinator at Babies can't wait. I was aware that she was rushed and on her way to a meeting with someone else. She ran down what the the team decided. Susan, the OT, said that it was not possible for her to make up the lost OT appointments, since she is only willing to travel to the Dalton area twice per month, so Ellen and Susan will meet at my house, a week from today, to "talk about what will happen." I didn't really have a chance to respond. Ellen made it clear that, since it is a state program, certain steps must be taken in order to make a new plan, and all of that takes TIME. Manny has been in the BCW program for 5 months and in 7 months he will be 3 years old and will no longer be eligible, as the school system will take over. I want to call Ellen tomorrow and ask if we can skip the time-consuming meeting with Susan, drop OT with her, and ask for a "special instructor" to help with Manny, like Cindy suggested. I really hope that that will make things easier for BCW, I really do, so that they can send Susan to someone else who might need her more, and so that I can both keep Cindy, and get as much intensive therapy and help as we can for the 7 months we have remaining with Manny in that particular program. I just want to maximize Manny's exposure to HELP, combine the resources that WE can (sort of) afford with what the state has to offer, but I can only hold out so long for BCW. How irionic.. "I can only wait so long for Babies Can't Wait."
As if this post isn't long enough, I am going to brag about my first-born for a moment.
I laugh when the teachers send home a note marveling at his ability to read, write, spell, etc. In that aspect, yes, he is a genius! But the same phenomenon can be seen in Steve and I as we saw (and despaired at) in his early therapists. We are simply non-plussed by his abilities to read and write (well not really, we love being the parents of a genius), however we marvel at notes like these from his teacher:
"He sat during circle time and participated very well."
"He is following directions and cleaning up when asked."
"He was interacting with another child this morning and playing a tickle game. His participation during circle time is increasing. "
"During small group time Jake was doing pretend play with a horse and carriage. Very appropriate play!"
Today I took this video, and my friend, who I've never met in real life, but who has been insanely influential in our path as parents of these special kids, typed a message to me "So you say the boy is autisic huh?? From that video you'd NEVER know." Some people might say that and I wouldn't like it, but since she's worked with special needs kids (and from what I can gather, is really REALLY good at it, considering she's been able to cyber-coach me through some very hard times) I see it as the highest praise for my little boy. Thanks Carrie, you mean a lot to us.
Look at that referencing, the anticipation, the shared experience... Thats my boy!
(Lay it on me, I'm more than ready.)
According to Cindy's assessment, Manny's motor and adaptive skills are quite delayed, but she feels that at least he is showing improvement. However, his Social, Communication/Speech and Cognitive skills are next to non-existent. Not a surprise, but as always, hard to hear.
(Great, fine, OK. What do we do? Give me a plan, give me hope, we have 20 more minutes, you can do it.)
Cindy says that we need to gang up on Manny from every side, with intense therapy. She has offered, because of my schedule and hers, to come in on what is usually her day off, Friday, and see Manny at 9:30 in the morning every week. She also suggested that I ask Babies Can't wait if we can get a special instructor 2 days per week, but at least one day, and that instructor can either come to the house, or go to his preschool. Either way, she would like for her or someone to instruct his preschool teachers with some activities that will engage him, at least for a little while during the day. Also, since Steve's parents spend many hours with him every week, she would like to see them bring him to therapy sessions at least a little so that they can also learn specific activities that will engage him.
(Ok! Awesome! We have a plan, with a whole 5 minutes left! What activities.. I'll start today!)
Well, it was only an hour, and an assessment. Cindy doesn't know what to do with him either.. yet. What does Manny like? I don't know... chewing on things? Laying on the floor? Riding in the carrier? She says we may even need to build on some of those things.. but we're going to figure it out. She said we would. I came home and sent some photos for printing for a picture board for his favorite foods. I actually feel like I have someone on my team who WILL figure it out.
Cindy asked me an interesting question when we were having the discussion about finding things he was interested in. "What is the main difference you see between Manny and Jake at this point?"
Oh gosh, well.. Jake was.. for one thing, talking. At 2 and a half he was ONLY labeling, but had a vocabulary of a zillion words. He LOVED to label. He was good at drawing, he suddenly got interested in sign language, and that was a whole NEW way to label. It wasn't rocket science, I just took the things that he was good at, the things he was interested in and I built upon that. So.. lets learn sign language for emotions, lets label emotions, and actions, and abstract ideas!
Manny doesn't have these interests, or skills. He's not "good at" anything. I have no idea where to start. I'm twice as terrified for him, and only half as hopeful, at least on my own. Jake, his Dad and I did a decent job on our own, but Jake showed us the way. We need a little more guidance when it comes to Manny, and a LOT more help from our support team.
And we have it! When I got home I called Steve's mother to ask her if she could help me with the kids tomorrow afternoon. I didn't even get a hello out before I was asked "How did the appointment go!?" I keep forgetting that she also had a special needs child who required a lot of help and extra attention, and doesn't resist talking about the "uncomfortable" subject of her grandkids. She listened to what I had to say and asked if Manny was going on Friday. Oh Jeez.. no.. I have 8 dogs lined up for Friday.. there's no way, I don't even know if I could even get in TOUCH with all of those people in time, besides, that's my only day this week to make money. "Well, don't turn her down! I'll take him to Cindy if he can get an appointment, and then take him home with me so you can do the dogs. I'm taking Pops too, he's going to go to some sessions with Cindy too, because Manny likes him, and listens to him."
(Really? Am I dreaming? I can have an iota of balance in my life, AND Manny will get the help he needs? Its not going to rest on JUST Steve and me? "Grateful" doesn't begin to describe how I feel towards them at this point. They just WANT to help?!)
Later I returned a call from Ellen, the Service Coordinator at Babies can't wait. I was aware that she was rushed and on her way to a meeting with someone else. She ran down what the the team decided. Susan, the OT, said that it was not possible for her to make up the lost OT appointments, since she is only willing to travel to the Dalton area twice per month, so Ellen and Susan will meet at my house, a week from today, to "talk about what will happen." I didn't really have a chance to respond. Ellen made it clear that, since it is a state program, certain steps must be taken in order to make a new plan, and all of that takes TIME. Manny has been in the BCW program for 5 months and in 7 months he will be 3 years old and will no longer be eligible, as the school system will take over. I want to call Ellen tomorrow and ask if we can skip the time-consuming meeting with Susan, drop OT with her, and ask for a "special instructor" to help with Manny, like Cindy suggested. I really hope that that will make things easier for BCW, I really do, so that they can send Susan to someone else who might need her more, and so that I can both keep Cindy, and get as much intensive therapy and help as we can for the 7 months we have remaining with Manny in that particular program. I just want to maximize Manny's exposure to HELP, combine the resources that WE can (sort of) afford with what the state has to offer, but I can only hold out so long for BCW. How irionic.. "I can only wait so long for Babies Can't Wait."
As if this post isn't long enough, I am going to brag about my first-born for a moment.
I laugh when the teachers send home a note marveling at his ability to read, write, spell, etc. In that aspect, yes, he is a genius! But the same phenomenon can be seen in Steve and I as we saw (and despaired at) in his early therapists. We are simply non-plussed by his abilities to read and write (well not really, we love being the parents of a genius), however we marvel at notes like these from his teacher:
"He sat during circle time and participated very well."
"He is following directions and cleaning up when asked."
"He was interacting with another child this morning and playing a tickle game. His participation during circle time is increasing. "
"During small group time Jake was doing pretend play with a horse and carriage. Very appropriate play!"
Today I took this video, and my friend, who I've never met in real life, but who has been insanely influential in our path as parents of these special kids, typed a message to me "So you say the boy is autisic huh?? From that video you'd NEVER know." Some people might say that and I wouldn't like it, but since she's worked with special needs kids (and from what I can gather, is really REALLY good at it, considering she's been able to cyber-coach me through some very hard times) I see it as the highest praise for my little boy. Thanks Carrie, you mean a lot to us.
Look at that referencing, the anticipation, the shared experience... Thats my boy!
Small Update
Ellen, Manny's service coordinator with Babies Can't Wait, called on Monday. She said that she was meeting with "the team" Tuesday (yesterday) to discuss Manny's services. I explained my frustrations so far. She said that she is going to discuss my suggestions that A) we get compensation for the OT appointments that have been missed and B) set Manny up with either speech therapy or a special instructor to come weekly. She again stated that we can not do OT with Cindy AND with the state. I have since found out that this is not true and that we are entitled to help from the State regardless of what we are doing privately. She said that she will be calling me today to update me on what they decided, and I plan on bringing this up. I can understand BCW's delimma, and their desire to keep money in the program and give it to people who are more "deserving" of services than we are, however I would prefer that at least one person be honest with me. I simply wish that I wouldn't have wasted Manny's precious time waiting on a program that was supposed to help my son, not simply give lip service to what they are supposed to do.
Manny's first appointment with Cindy is today. I have a giant knot in my stomach in anticipation of this assessment. I trust Cindy and want to think that she can help Manny, but I'm not looking forward to what she has to say abou this development. The appointment is at 11:30, usually near Manny's naptime, but I took what I could get to get my foot in the door. I'm hoping to set up a weekly session with her as early in the morning as possible.
Ok, putting my head down and walking into the wind.....
Manny's first appointment with Cindy is today. I have a giant knot in my stomach in anticipation of this assessment. I trust Cindy and want to think that she can help Manny, but I'm not looking forward to what she has to say abou this development. The appointment is at 11:30, usually near Manny's naptime, but I took what I could get to get my foot in the door. I'm hoping to set up a weekly session with her as early in the morning as possible.
Ok, putting my head down and walking into the wind.....
Tuesday, January 26, 2010
Second Rate Citizens
Manny was accepted to Babies Can't Wait at the beginning of September. I was told at the time that the OT was out of town, and it would be close to a month before his first visit. I'm used to waiting months for anything to happen, so this didn't sound odd to me at all. Since that time Manny has had two visits from the Occupational therapist, who cancelled twice, Manny was sick once, and then I did not hear from her for two months. I called the service coordinator at the beginning of January and voiced my concerns.
Susan, the OT called me one day last week and said that she was yet again out of town, but she set up an appointment for Manny for Friday February 5th. That would be 8 weeks from his last scheduled appointment, which was also cancelled. She said she'd had issues with her mother in Florida, and we had had one day of in climate weather as well.
During those few months that Manny has received no services, his abilities have declined dramatically. As I have written before, his eye contact is almost nonexistent, any spoken language that remained has disappeared, and he has stopped using sign language. Would that be different should he have received OT during this time? I don't know. I guess I can add that to the list of questions that I will ask myself every day for the rest of my life. Every bit of literature that I read states that early intervention is the KEY to success for these children, yet, getting services is a nightmare.
At this point I told Steve I couldn't take one more day of doing nothing for my son. We decided to seek services through Cindy, even if we had to pay out of pocket (approx $400 per month). I called Linda, Cindy's receptionist, and she called me back promptly, saying that all I needed was a prescription from Dr. Michaels. After a half dozen phone calls to Dr. Michaels' office and no response, I finally had to do what I hate doing, calling and making a complete jack-ass out of myself, crying on the phone to the receptionist and basically threatening to "come down there" if she sent me to voicemail one more time. After 2 weeks of calling and getting no response, my jack-ass sort of behavior got them to not only call me back within 20 minutes, but it got a prescription written up and a staff member to personally walk the prescription over to Linda's office. Sheesh. Now I have an appointment on Wednesday with Cindy.
To be fair, Susan (the State OT) left a message with me yesterday, but our land-line was out of order and I didn't get the message. She called today and I answered and she wanted to come see Manny tomorrow. Unfortunately, I have a zillion things lined up for tomorrow and had lined up childcare for Manny. From what I gathered, it was tomorrow or nothing, and she now said that she would be out of town for another week and a half after that. She says that she doesn't recall calling me and making an appointment for the 5th.
At that point I sort of lost it, telling her that I am not a stay-at-home mom. Even though I work at home, I actually do have a job. I need to know more than one day in advance that she is coming. On the day that I DO have an appointment with her, I promise that every attempt, barring illness or fire, will be made to be respectful of her time. I explained that it felt like, because of one mistake on my part, that I had been written off as someone who wasn't going to be respectful of her time. I told her about Manny's regressions, that I was basically in a panic to get SOME sort of help for my son. While I don't blame her for having her own family/car/weather issues, that still doesn't help Manny. I mentioned that I was trying to get him in with Cindy. Of course she told me that I could not do private OT AND state OT. She also mentioned that, because cases like mine where the parents have insurance are such a "headache" and the paperwork was a "nightmare" she had made the choice not to even bill for Manny. "So you aren't getting paid anything to see Manny?" Exactly how am I supposed to feel about that? Well, you can imagine. It was time to go get Manny from school, I told her I had to go and hung up.
I tried not to sob uncontrollably while I was picking up Manny.. it didn't work. Luckily Manny's teacher has an autistic son, so all I had to tell her was that I was being blown off by the State OT and she patted my back and said that she understands.
Later Susan called back and attempted to smooth things over. I don't blame her, exactly.. however I do feel like our area would probably be better off if she would quit, leaving the State to have to pay for services from someone who actually has time and motivation to do the job, instead of leaving us to feel like we're just being strung along until the child is three years old. I really feel like Susan just wanted to make sure I didn't think that because "insurance cases like mine are such a huge headache" that was why she hasn't really bothered about Manny, or even attempted to call and let me know why she wasn't seeing him. It really didn't work. I'm trying not to be one-sided about this, but I'm the parent watching my child's abilities go in the toilet every day. She also offered to come to see him tonight, "late, like 8 PM." I'm sure, by refusing that, because that's his and Jake's bedtime, that I was once again trashing our chances of getting any state help for paying for his OT.
I'm not angry at Susan or the people at Babies Can't Wait (well, obviously babies CAN wait.. for a very very long time), but I'm completely and utterly disgusted with the system. I worry all the time that my special children will be treated as second rate citizens when they are older should they become special needs adults. I don't really have to wonder, as already I feel like we are treated like people who are just trying to mooch off of the system. The fact that Steve and I have a decent income between us many times only makes it worse. We can't afford to pay for all of the care that isn't paid for by our insurance, however the fact that we HAVE insurance causes the system to work even less for our children.
I'm tired of fighting. Maybe I'm not doing the right thing for those who will follow us in struggling with Babies Can't Wait by giving up, but we have to do the best we can for Manny. The ONLY gift that I can give him right now to ensure that he is the best that he can be is the right services and help RIGHT NOW. I simply have no other choice other than to get him real services with a good occupational therapist, EVERY week, not every other week.. maybe.. if she has time for Manny. I will write a letter of due process and try to get BCW to pay for those OT appointments that have not been provided through them since he was accepted, and will continue to get OT with Cindy, someone who I KNOW is on our side and who we can trust.
Susan, the OT called me one day last week and said that she was yet again out of town, but she set up an appointment for Manny for Friday February 5th. That would be 8 weeks from his last scheduled appointment, which was also cancelled. She said she'd had issues with her mother in Florida, and we had had one day of in climate weather as well.
During those few months that Manny has received no services, his abilities have declined dramatically. As I have written before, his eye contact is almost nonexistent, any spoken language that remained has disappeared, and he has stopped using sign language. Would that be different should he have received OT during this time? I don't know. I guess I can add that to the list of questions that I will ask myself every day for the rest of my life. Every bit of literature that I read states that early intervention is the KEY to success for these children, yet, getting services is a nightmare.
At this point I told Steve I couldn't take one more day of doing nothing for my son. We decided to seek services through Cindy, even if we had to pay out of pocket (approx $400 per month). I called Linda, Cindy's receptionist, and she called me back promptly, saying that all I needed was a prescription from Dr. Michaels. After a half dozen phone calls to Dr. Michaels' office and no response, I finally had to do what I hate doing, calling and making a complete jack-ass out of myself, crying on the phone to the receptionist and basically threatening to "come down there" if she sent me to voicemail one more time. After 2 weeks of calling and getting no response, my jack-ass sort of behavior got them to not only call me back within 20 minutes, but it got a prescription written up and a staff member to personally walk the prescription over to Linda's office. Sheesh. Now I have an appointment on Wednesday with Cindy.
To be fair, Susan (the State OT) left a message with me yesterday, but our land-line was out of order and I didn't get the message. She called today and I answered and she wanted to come see Manny tomorrow. Unfortunately, I have a zillion things lined up for tomorrow and had lined up childcare for Manny. From what I gathered, it was tomorrow or nothing, and she now said that she would be out of town for another week and a half after that. She says that she doesn't recall calling me and making an appointment for the 5th.
At that point I sort of lost it, telling her that I am not a stay-at-home mom. Even though I work at home, I actually do have a job. I need to know more than one day in advance that she is coming. On the day that I DO have an appointment with her, I promise that every attempt, barring illness or fire, will be made to be respectful of her time. I explained that it felt like, because of one mistake on my part, that I had been written off as someone who wasn't going to be respectful of her time. I told her about Manny's regressions, that I was basically in a panic to get SOME sort of help for my son. While I don't blame her for having her own family/car/weather issues, that still doesn't help Manny. I mentioned that I was trying to get him in with Cindy. Of course she told me that I could not do private OT AND state OT. She also mentioned that, because cases like mine where the parents have insurance are such a "headache" and the paperwork was a "nightmare" she had made the choice not to even bill for Manny. "So you aren't getting paid anything to see Manny?" Exactly how am I supposed to feel about that? Well, you can imagine. It was time to go get Manny from school, I told her I had to go and hung up.
I tried not to sob uncontrollably while I was picking up Manny.. it didn't work. Luckily Manny's teacher has an autistic son, so all I had to tell her was that I was being blown off by the State OT and she patted my back and said that she understands.
Later Susan called back and attempted to smooth things over. I don't blame her, exactly.. however I do feel like our area would probably be better off if she would quit, leaving the State to have to pay for services from someone who actually has time and motivation to do the job, instead of leaving us to feel like we're just being strung along until the child is three years old. I really feel like Susan just wanted to make sure I didn't think that because "insurance cases like mine are such a huge headache" that was why she hasn't really bothered about Manny, or even attempted to call and let me know why she wasn't seeing him. It really didn't work. I'm trying not to be one-sided about this, but I'm the parent watching my child's abilities go in the toilet every day. She also offered to come to see him tonight, "late, like 8 PM." I'm sure, by refusing that, because that's his and Jake's bedtime, that I was once again trashing our chances of getting any state help for paying for his OT.
I'm not angry at Susan or the people at Babies Can't Wait (well, obviously babies CAN wait.. for a very very long time), but I'm completely and utterly disgusted with the system. I worry all the time that my special children will be treated as second rate citizens when they are older should they become special needs adults. I don't really have to wonder, as already I feel like we are treated like people who are just trying to mooch off of the system. The fact that Steve and I have a decent income between us many times only makes it worse. We can't afford to pay for all of the care that isn't paid for by our insurance, however the fact that we HAVE insurance causes the system to work even less for our children.
I'm tired of fighting. Maybe I'm not doing the right thing for those who will follow us in struggling with Babies Can't Wait by giving up, but we have to do the best we can for Manny. The ONLY gift that I can give him right now to ensure that he is the best that he can be is the right services and help RIGHT NOW. I simply have no other choice other than to get him real services with a good occupational therapist, EVERY week, not every other week.. maybe.. if she has time for Manny. I will write a letter of due process and try to get BCW to pay for those OT appointments that have not been provided through them since he was accepted, and will continue to get OT with Cindy, someone who I KNOW is on our side and who we can trust.
Thursday, January 14, 2010
Super Powers
*****
I haven't written a lot about my Jake lately. I've been too busy drowning in my own bullshit. Sometimes curious people ask if Jake can "do things." You know, like Rain Man or the autistic man who can draw cityscapes after seeing a brief Ariel view of a city. I call them superpowers, and yes, he has quite a few of them, way too many to showcase here, but I will try.
***Warning: This is one of those posts that is too long and includes way too many pictures and/or videos, and took me weeks or months to put together. It probably won't be interesting to anybody but some Canadians that like us for some reason (and you know who you are). Family members who are waiting for a shout out should probably steer clear.***
And if you aren't into all of the artwork and photos, scroll to the bottom for a more traditional HALLELUJAH moment.
On to the fun stuff:
I'm not sure how many pictures of Jake's drawing and painting I have posted here on the blog (I get confused, because so much is posted real-time on facebook), but his drawing ability has honestly leveled out a little, and, as far as I know (and I know little, having very little to compare to) I *think* that his drawing is becoming more age-typical. Lately his focus is on letters and numbers. He has lost a lot of his interest in drawing and tends to simply write words, letters and numbers.
Many times, with children on the spectrum, there is a lot of concern when a child has advanced reading ability, whether or not they are actually comprehending the words, or simply regurgitating something that they have memorized. Yes, they can spell "C-A-T, cat" because they saw it on the television, but they don't make a connection between the word "cat" and the actual animal or drawn figure. With Jake, it has been proven over and over that this is not the case. He has drawn numerous figures himself after writing a word, so at least we know that his labeling ability expands to written nouns and the objects. Also, Jake can write words, sight-read them, and most recently (I just discovered) he can hear a word spelled and identify it.
I love taking videos of Jake and these interactions, especially because I always learn something or see something I didn't see before. At the beginning he finishes a word for me (what we were doing before I went to get the camera, but he wouldn't repeat it). Then, I begin to spell words for him. When I spell "D-O-G" he first says "clifford" (a dog cartoon character, of course), then he answers correctly, then says "Poo" (our old dog who died Christmas week). I didn't notice at the time, but watching the video I realize that he was giving me examples of dogs that he knew. He even quietly says "Poo a dog" or "Poo is a dog," and I don't even notice. It really makes me wonder what else he says that I don't notice.
Here is the video, he shows his knowledge of mostly 3 letters words, with a few four and even a couple of 5 letter words. He knows a TON, though getting him to answer consistently is still an issue:
His superpowers are amazing, and make for great conversation, but when I'm not in such an optimistic mood, I will call them "party tricks." I won't focus too much on that now, becuase he really is getting better at the things that he is deficient in such as social interaction, empathy, etc. He still has a very very long way to go. I didn't teach him ONE SINGLE THING that I am demonstrating here, not even the spelling. He simply learns that from TV and video games. The things that most children will struggle with come naturally to Jake. Learning to realize that he's hurt someone's feelings, or that making other people happy is important is something that he will have to be taught, and there are only a few people on the planet that really really good at teaching those things to a child.. and I'm afraid that I'm not one of them. The ones who do it professionally are usually regarded as kooks and/or they charge a lot of money to teach.
Jake has been taking pictures for quite a while. I've scattered pictures that he's taken through this post, and will simply list some below. I couldn't remember if any of these have made it to previous blog posts, and I apologize if they have. Also, if you're a friend on facebook, you've probably seen all of this as it happened.. sorry. Despite the fact that we invested a pretty penny into my "good" camera, after a few episodes of Jake sneaking off with it, I just can't deny him access to the camera. Often I find these pictures when I download some photos of bags for my store. Other times I give him the camera, when we are out in the woods, in the city, or in the backyard. His perspective is definitely interesting.
(all photos in this post were one hundred percent Jake's own.. with absolutely NO coaching.. sometimes we didn't even know he was taking them. Out of the house he was being supervised closely, but allowed to choose his own subject matter)
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There are so many more nice pictures on my computer somewhere, but I am impatient. I will definitely be handing the camera over to Jake during our various outings this spring. I have insurance on the thing, and what could be more priceless than pictures taken by my son. It doesn't hurt that he actually knows how to frame pictures. I have already handed over my old terrible digital, and have contemplated getting him one of those children's cameras. Unfortunately, he is impatient like any other child (or me, when it comes to cameras) and I would rather risk my camera to get his perspective in good quality.
Yesterday Jake was running around with my camera, as usual. He had finished eating dinner and Steve had just returned home, so we were thankful that he was occupied while Steve and I ate. We did not know that the camera was on the moving picture video setting, so there were a stream of disjointed and few-second-long films on the camera. However, these two stood out as consecutive pieces... Maybe I should try to explain video to him a little more so that he can capture more funny episodes like this. Again, I thought he was just taking pictures:
(a note: he calls my bottle of nutritional yeast "cheese")
More superpowers to come.
Ok.. The Big Finish... and way TMI.....
Here is a video of Jake acting pretty much like a normal 4 year old. He found a pair of my very favorite hand-knitted socks (thanks Ariane) and liked how slippery they were. He called the floor "ice" and even referenced me by looking right at me (although I've found that sometimes the best way to look into my childrens' eyes is to look through a camera lense, because they look at the CAMERA, even though they both avoid eye contact). At the end of the video he answers two questions: "What is your name." and "How old are you." Two years worth of speech therapy, a point where he answered the first question for a couple of weeks followed by a loss of that skill... and now FINALLY, he answers it consistently.... I can now prove that he is my child if he throws a tantrum in an airport.
The last amazing feat has no pictures, and you will be glad of that, I'm sure. Potty training... such a subject with any new parents, quickly became something that Steve and I didn't talk about with other people. Jake never had any issue with being wet or soiled as an infant or toddler, that is, he wouldn't tell us if he was wet or dirty. He finally started telling us around the age of three and a half. When it became WAY past time for him to begin potty training, we tried to coax him to the potty. He was terrified, literally terrified of the toilet and even of his potty chair. Pressure to use the toilet only resulted in making matters worse, and, since we are human, frustration and scolding made things even worse than that. Jake went through a phase of feces smearing that I won't even give the details of. These sorts of things will make you feel pretty much like the worst parent in the world and I'll admit that even lied about it to my friends, saying that he'd stopped. Many typical children never exhibit these behaviors, and even if they do, its not a "behavior" and more of an accident or a temporary phase.
Jake did not find interest in the toilet until he was just four, when he started peeing in the potty. Once that was accomplished, he pretty much NEVER had another accident. Pee went in the potty.. GOT it.. check. ("Wapner at eight.") Poop was another story. Add into this scenario that we have a PEE trained child who will pee in the potty if he's in underwear, or in his diaper if he's in a pull-up.. and.. jeez, what to do?? In the past year we have went from no bowel control, including outings or school, to a terrific fear of sitting on ANY potty, including the kiddie toilet, to a child who could be bribed to sit on the potty if we gave him his I-touch (yeah yeah.. HIS I touch.. only to be played with ON the potty). I feel like I'm tempting fate by even bragging about this, but Jake has pooped on the potty (unprompted.. meaning I didn't threaten to freak out) for three days in a row. Please please PLEASE let this be similar to when he figured out that pee went in the potty. He is using the kiddie potty, and, because he is a creature of habit, he will often go and sit on the potty to play his I-touch.. which I am sure will be another struggle in the future, but it is progress.. sweet sweet progress. Considering the intense pressure that has been put on me, as a mother, by my family members since he was 2 years old to potty train.. I can finally say.. SEE! I did it.... maybe....
I'm not good at writing conclusions anymore, because, when it comes to my kids, there just isn't one. There's so much more to talk about, but I have to end somehow, so I will.
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