I haven't updated in awhile! It's been busy as usual around here.
Today was a good day for me, I found out I have been accepted into UMA. Click here to find out more about my prospective degree! I'm very, very excited. I have an appointment next Friday to take my placement testing and meet with an adviser to choose my classes.
Ethan had parent/teacher conferences and is doing well. We got his report card today and I can't believe how much kids do in Kindergarten these days! No wonder he is so tired when he gets home.
Aidan is doing great with potty training and is talking up a storm, and sharing so many new and exciting ideas with all of us. It's great to know what's going on behind those thoughtful eyes.
Julian's still in speech and working very hard. Some days he is very frustrated and upset and other days he does beautifully. There will be ups, and there will be downs, but he is so full of potential, and so loved.
Audrey is doing well, she "walked" holding my fingers for the first time today. I think she'd crawl if we had a carpet or a rug. Maybe I am fooling myself :)
Friday, April 3, 2009
Wednesday, March 11, 2009
Autism
This was "the" evaluation for Julian, with someone qualified to give a diagnosis that would go down in his medical charts.
Julian has been diagnosed with autism. Which of course I was prepared for- as prepared as you CAN be. To say you are prepared for that isn't entirely true... it still sucks to sit in a room with four evaluators and have them tell you that.
The kids were great today. Julian was a good boy, and Audrey was a good girl. It was a long morning and afternoon for them and they were so reasonable. I was tired but patient, except for Julian kicking the back of my seat for 1 1/2 hrs the whole way there before it was even light out lmao
The evaluators were so nice and so kind. They explained a lot, and I asked a lot of questions. I asked where in the spectrum he fits and the developmental pediatrician says it used to be autism, PPD NOS, and Asperger's all under one "umbrella" diagnosis. She said they are starting to shy away from doing that, because if you exhibit certain behaviors, you are autistic and concentrating on the severity of it is pointless. Some kids go from very severe, to doing very well, and some kids don't make any progress at all, some kids regress, some go back and forth, etc. She said he does not have Asperger's, because his communication is not up to par- people with Asperger's have adequate communication skills but are socially challenged.
He still has to be evaluated for occupational therapy, which he needs. One more evaluation and maybe we can just work on therapies from here on out!
Evaluations are sooooo draining, mentally and physically. Julian's in lovely spirits though, glad to be out of the car and running through the house again lol
Julian has been diagnosed with autism. Which of course I was prepared for- as prepared as you CAN be. To say you are prepared for that isn't entirely true... it still sucks to sit in a room with four evaluators and have them tell you that.
The kids were great today. Julian was a good boy, and Audrey was a good girl. It was a long morning and afternoon for them and they were so reasonable. I was tired but patient, except for Julian kicking the back of my seat for 1 1/2 hrs the whole way there before it was even light out lmao
The evaluators were so nice and so kind. They explained a lot, and I asked a lot of questions. I asked where in the spectrum he fits and the developmental pediatrician says it used to be autism, PPD NOS, and Asperger's all under one "umbrella" diagnosis. She said they are starting to shy away from doing that, because if you exhibit certain behaviors, you are autistic and concentrating on the severity of it is pointless. Some kids go from very severe, to doing very well, and some kids don't make any progress at all, some kids regress, some go back and forth, etc. She said he does not have Asperger's, because his communication is not up to par- people with Asperger's have adequate communication skills but are socially challenged.
He still has to be evaluated for occupational therapy, which he needs. One more evaluation and maybe we can just work on therapies from here on out!
Evaluations are sooooo draining, mentally and physically. Julian's in lovely spirits though, glad to be out of the car and running through the house again lol
Tuesday, March 3, 2009
Some background on Julian
I realize that some people who may now view this blog don't know some of what's been going on with Julian. To make things easier, I'll sum it up as quickly and as simply as I can. This is what we are aware of, prior to his March 11 appointment at EMMC.
For what has now been just over a year, I have been expressing my concern that something "wasn't right" with Julian. I couldn't put my finger on it, but he seemed slower, and the best way I could find to describe it to others was that something was missing. I communicated this with many people, all of whom told me that he was fine. Still, I had the niggling feeling that something was "wrong" and decided to press the issue. It got to the point where I really couldn't stand it any longer- I brought him in to the doctor and she agreed when he didn't respond to his name that something unusual was going on. Her team referred him to a developmental pediatrician in Bangor. But I, myself, hesitant to wait three months to do anything about it, additionally referred him to CDS (Child Development Services).
CDS responded quickly and thoroughly. So far, through CDS, Julian has been definitively diagnosed with a Sensory Integration Dysfunction. This is in the Autism spectrum as a sensory processing disorder. Additionally, he has apraxia, low muscle tone, oral issues, and his left brain function is extremely low.
What all of this basically means is the entire world is extremely overwhelming to Julian. To the point that he can't properly function, learn, process, interact, etc. The tag on the back of his shirt can make his life impossible. If his socks are twisted or the lights are too bright, he won't learn anything that day because all he can pay attention to is that. He can't look you in the eyes because it is too much for him- it causes too many thoughts, sensations, awareness of surroundings, sounds, etc for him. If someone holds him, it can feel like someone is rubbing sand paper on him. The dryer might sound like a jet engine on the runway, but the fire alarm might not even register because too much else is happening. He's not even aware of his own body and self- he doesn't know where in the room he is, because he isn't sure where he begins or ends. When we look straight ahead, we know what we will look like when we look down. We know what we are touching, what it will feel like, what we are close to, etc. He does not have that awareness of self. The entire world is basically "right in his face" even if it's outside or across the room because he isn't aware of his space in the world.
His sensory dysfunction is why he literally doesn't stop moving all day- the evaluator said that children with sensory processing disorders sometimes enjoy constant movement. Also, this ties in with his poor muscle tone. He can't hold himself up straight sitting and it either hurts, annoys or bothers him to sit. (When I say my child is literally into things all day long, I am not joking... at least now I know why, hopefully that makes it slightly less frustrating.)
He is having a hard time speaking because his mouth doesn't work properly. This goes all the way back to his issues with successfully breastfeeding. He didn't want to be held, nor did he stimulate enough milk production or take enough in. He could never be an effective nurser. (Finally the stress and guilt of that is removed from my plate- I could not have safely and healthily nursed my son past the seven months that I struggled through it.) When he had his first solid foods, he gagged a lot. At the time it just seemed funny, now I know thanks to the evaluator that this was an early sign of a major issue.
Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.
Apraxia, combined with the overwhelming conditions in his surroundings due to his Sensory Integration Dysfunction, cause him to be extremely irritable, distanced from loved ones, and a poor learner.
The left side of his brain is below the level of a six month old child. Your left side contains analytical, verbal, logical, computational, factual, grammatical, and literal retention. It is also responsible for your vocabulary. He also has the communication skills of a 12 month old. But, he has the desire to share information at level with other children his age. What is around him is overwhelming- what he is taking in, however, exceeds what he can share with you. He is basically trapped in his own mind, whatever he thinks or wants he cannot get. He is also having serious issues repeating words because he does not comprehend the amount of syllables in the word. This is, again, a left brain trait. It complicates his learning abilities.
We were given a lot of information and a lot of things to do with him. It turns out that by parenting him the way that is "right" and suggested by medical professionals, parents, etc. we were doing him more harm than good. For an example, when he is upset, he needs to have pressure on all of his joints by pushing or squeezing. The evaluator actually did this while she was here and he responded wonderfully to her, it was amazing. My son who screams at a hug was letting this stranger squeeze his body- it blew my mind. She was spot on with what he needed.
Julian is now in speech therapy. If you read the first blog I posted, the therapist now thinks his muscle tone is worse than suggested in previous CDS reports. This is something I will bring up on March 11 at his EMMC appointment. We may expect to see some better diagnoses after that day, and some worse. All will be taken into account. He qualifies for two additional therapies; occupational and physical. They will only do two at a time, and it is based on availability and what services he needs the most. I don't know what his next therapy will be.
He has come a long way, and we are very proud of him!!! If you have any questions, don't hesitate to ask. I am beyond the point of being sensitive about this issue, and now feel that it is my place to expand awareness!
For what has now been just over a year, I have been expressing my concern that something "wasn't right" with Julian. I couldn't put my finger on it, but he seemed slower, and the best way I could find to describe it to others was that something was missing. I communicated this with many people, all of whom told me that he was fine. Still, I had the niggling feeling that something was "wrong" and decided to press the issue. It got to the point where I really couldn't stand it any longer- I brought him in to the doctor and she agreed when he didn't respond to his name that something unusual was going on. Her team referred him to a developmental pediatrician in Bangor. But I, myself, hesitant to wait three months to do anything about it, additionally referred him to CDS (Child Development Services).
CDS responded quickly and thoroughly. So far, through CDS, Julian has been definitively diagnosed with a Sensory Integration Dysfunction. This is in the Autism spectrum as a sensory processing disorder. Additionally, he has apraxia, low muscle tone, oral issues, and his left brain function is extremely low.
What all of this basically means is the entire world is extremely overwhelming to Julian. To the point that he can't properly function, learn, process, interact, etc. The tag on the back of his shirt can make his life impossible. If his socks are twisted or the lights are too bright, he won't learn anything that day because all he can pay attention to is that. He can't look you in the eyes because it is too much for him- it causes too many thoughts, sensations, awareness of surroundings, sounds, etc for him. If someone holds him, it can feel like someone is rubbing sand paper on him. The dryer might sound like a jet engine on the runway, but the fire alarm might not even register because too much else is happening. He's not even aware of his own body and self- he doesn't know where in the room he is, because he isn't sure where he begins or ends. When we look straight ahead, we know what we will look like when we look down. We know what we are touching, what it will feel like, what we are close to, etc. He does not have that awareness of self. The entire world is basically "right in his face" even if it's outside or across the room because he isn't aware of his space in the world.
His sensory dysfunction is why he literally doesn't stop moving all day- the evaluator said that children with sensory processing disorders sometimes enjoy constant movement. Also, this ties in with his poor muscle tone. He can't hold himself up straight sitting and it either hurts, annoys or bothers him to sit. (When I say my child is literally into things all day long, I am not joking... at least now I know why, hopefully that makes it slightly less frustrating.)
He is having a hard time speaking because his mouth doesn't work properly. This goes all the way back to his issues with successfully breastfeeding. He didn't want to be held, nor did he stimulate enough milk production or take enough in. He could never be an effective nurser. (Finally the stress and guilt of that is removed from my plate- I could not have safely and healthily nursed my son past the seven months that I struggled through it.) When he had his first solid foods, he gagged a lot. At the time it just seemed funny, now I know thanks to the evaluator that this was an early sign of a major issue.
Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.
Apraxia, combined with the overwhelming conditions in his surroundings due to his Sensory Integration Dysfunction, cause him to be extremely irritable, distanced from loved ones, and a poor learner.
The left side of his brain is below the level of a six month old child. Your left side contains analytical, verbal, logical, computational, factual, grammatical, and literal retention. It is also responsible for your vocabulary. He also has the communication skills of a 12 month old. But, he has the desire to share information at level with other children his age. What is around him is overwhelming- what he is taking in, however, exceeds what he can share with you. He is basically trapped in his own mind, whatever he thinks or wants he cannot get. He is also having serious issues repeating words because he does not comprehend the amount of syllables in the word. This is, again, a left brain trait. It complicates his learning abilities.
We were given a lot of information and a lot of things to do with him. It turns out that by parenting him the way that is "right" and suggested by medical professionals, parents, etc. we were doing him more harm than good. For an example, when he is upset, he needs to have pressure on all of his joints by pushing or squeezing. The evaluator actually did this while she was here and he responded wonderfully to her, it was amazing. My son who screams at a hug was letting this stranger squeeze his body- it blew my mind. She was spot on with what he needed.
Julian is now in speech therapy. If you read the first blog I posted, the therapist now thinks his muscle tone is worse than suggested in previous CDS reports. This is something I will bring up on March 11 at his EMMC appointment. We may expect to see some better diagnoses after that day, and some worse. All will be taken into account. He qualifies for two additional therapies; occupational and physical. They will only do two at a time, and it is based on availability and what services he needs the most. I don't know what his next therapy will be.
He has come a long way, and we are very proud of him!!! If you have any questions, don't hesitate to ask. I am beyond the point of being sensitive about this issue, and now feel that it is my place to expand awareness!
Some pictures :)
I only have a few photos from random photo sessions for right now; I will have to make myself take and upload more pictures soon, especially of the other children. We tend to be so busy with all of them here that we generally don't take many photos.
A beautiful couple, if I do say so myself :)
Our gorgeous little dimple girl, Audrey (7 mos)
Working on a goatee so he can look more like Daddy
Aidan begged me to take a picture of him eating ice cream lol
CAN YOU SAY TROUBLE?!
Aidan adores his little sister!
Snuggle buddies
Ethan's very first shoe tie! We are so proud of him!
Indiana Jones! Thanks for the hat, Grandpa!
Girl time! I did Alena's makeup and hair.
Haircuts and hectic days
The boys are all buzzed again as of Sunday, officially making Audrey the young child with the longest hair. (Alena still wins on all other accounts.)
It was next to impossible to get them all to sit still and pose long enough to get a photo of them, and the younger two looked at my attempts to amuse them, rather than their father holding the camera. At least Ethan and Aidan had their focus right... Anyway, it's been a bit hectic around here, to say the least, mostly due to the picture. An acquaintance of mine on the Internet happened to notice something that occurs in many of Julian's photos- a white eye, instead of a red one. I had never thought anything of it. In fact, I'd edited it out often, thinking it was a trick of the camera. It just so happens it is a legitimate sign of a potential issue (as if we have not had enough issues lately) and requires medical attention.
Of course I called and had him seen right away, and his doctor looked straight on at him and didn't see it- she saw the normal red. But she doesn't know anything about checking eyes at angles (and very well shouldn't, she's not an opthamologist) and his pictures seem to only do that to his left eye, when he is glancing toward his right. Soooo, we shall see. He was referred to an opthamologist, and she said she'd like to see him go regardless, considering his slightly lazy eye. She is concerned about him losing some vision in that eye if it's not corrected. Of course, last night I went all manic and looked at just about every photograph of him that existed and found some other prime examples of white eye reflections. Here is another one, at about the age he started to stop progressing as rapidly:
Nothing more than food for thought right now. I am trying to stay rational. My mantras at this point:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
In loving memory of
Fr Bertram Griffin -- 1932-2000
Requiescat in Pace
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
Proverbs 3, 5-6
Friday, February 27, 2009
Sickness and speech updates
A quick update for everyone, since if you are reading this, you likely are updated up until this point...
Everyone is feeling quite a bit better after the nasty stomach flu. I think I am the one with the most lingering symptoms and even those are diminishing. Ethan is feeling back to his old self, which is a relief for all of us- the poor guy had to miss a whole week of school but he is now loaded up on Pedialyte and running around like nothing ever happened.
Julian missed Speech on Wednesday due to the stomach bug of DEATH, but we managed to go today. He has Speech every Wednesday and Friday at 10:00 for about an hour- usually around an hour and fifteen minutes. His speech language pathologist is Kate and she's very nice, he seems to like her a lot. She is very good with him and in tune with his needs. He has been frustrated more easily the last couple sessions as it becomes less about getting to know one another and more about actual work. (Hard to tell which parent he gets this from...)
Kate says she thinks that Julian's muscle tone issues are more severe than his CDS evaluation had outlined. Several times during his session, he became frustrated and lay down on the floor. He also kept doing his W-sit, and a concern of hers is that when he is laying flat on his back and has to sit up, he doesn't just sit up, he has to roll onto his side and then progress from there. She said she is interested in seeing what his evaluation on March 11 at EMMC says about that. Kate did tell me that she believes that if he gets occupational therapy and physical therapy going, his speech will fall into place. She feels as though his sensory issues and his physical abilities are so distracting for him that speech is on his mental back burner. Poor guy. He is trying so hard, and he really is learning more and more every day!
Julian is doing wonderful with his sign language- understanding is there a bit more than implementation is at this point. But it is better than feeling like you are talking to a wall, which is how I felt for months preceeding this.
Kate gave us stop sign laminated cards to put up on things that Julian is not supposed to touch or use. We are to tape them onto things he gets into, use sign language to express stop and no, and immediately redirect him. Repeatedly if necessary. (Don't even ask how many times I have had to stop typing this entry in order to use that!)
This morning was the first time that Julian asked for a snack instead of going to the cupboard and trying to get it for himself. This is great progress, because Julian developmentally is supposed to seek us for assistance and not try to take care of himself independently. It was wonderful!
Aidan is doing great with potty training. We have to go to Ellsworth today for errands and he is asking to wear his "unnies" (undies) there. He loves to use public restrooms, now that he is aware of their existence.
Audrey's been cranky lately because of the tummy bug and a cold- this child has colds all the time, the poor girl. Motrin seems to be the wonder drug. I hate to give her anything but when she is so inconsolable and you know it's because something hurts, how can you not? No teeth yet, and no solids either! She is growing like a weed, and her thighs speak volumes for the amount of calories she is managing to take in.
We were supposed to have Haydn, Alena, and Liam this weekend, but we are not entirely better, and we are likely still somewhat contagious. It is better for us and for them if we hold off another week or so.
Well, I had better go- we have to head to Ellsworth! If anyone stumbles across this and needs more detailed background information, feel free to ask.
Everyone is feeling quite a bit better after the nasty stomach flu. I think I am the one with the most lingering symptoms and even those are diminishing. Ethan is feeling back to his old self, which is a relief for all of us- the poor guy had to miss a whole week of school but he is now loaded up on Pedialyte and running around like nothing ever happened.
Julian missed Speech on Wednesday due to the stomach bug of DEATH, but we managed to go today. He has Speech every Wednesday and Friday at 10:00 for about an hour- usually around an hour and fifteen minutes. His speech language pathologist is Kate and she's very nice, he seems to like her a lot. She is very good with him and in tune with his needs. He has been frustrated more easily the last couple sessions as it becomes less about getting to know one another and more about actual work. (Hard to tell which parent he gets this from...)
Kate says she thinks that Julian's muscle tone issues are more severe than his CDS evaluation had outlined. Several times during his session, he became frustrated and lay down on the floor. He also kept doing his W-sit, and a concern of hers is that when he is laying flat on his back and has to sit up, he doesn't just sit up, he has to roll onto his side and then progress from there. She said she is interested in seeing what his evaluation on March 11 at EMMC says about that. Kate did tell me that she believes that if he gets occupational therapy and physical therapy going, his speech will fall into place. She feels as though his sensory issues and his physical abilities are so distracting for him that speech is on his mental back burner. Poor guy. He is trying so hard, and he really is learning more and more every day!
Julian is doing wonderful with his sign language- understanding is there a bit more than implementation is at this point. But it is better than feeling like you are talking to a wall, which is how I felt for months preceeding this.
Kate gave us stop sign laminated cards to put up on things that Julian is not supposed to touch or use. We are to tape them onto things he gets into, use sign language to express stop and no, and immediately redirect him. Repeatedly if necessary. (Don't even ask how many times I have had to stop typing this entry in order to use that!)
This morning was the first time that Julian asked for a snack instead of going to the cupboard and trying to get it for himself. This is great progress, because Julian developmentally is supposed to seek us for assistance and not try to take care of himself independently. It was wonderful!
Aidan is doing great with potty training. We have to go to Ellsworth today for errands and he is asking to wear his "unnies" (undies) there. He loves to use public restrooms, now that he is aware of their existence.
Audrey's been cranky lately because of the tummy bug and a cold- this child has colds all the time, the poor girl. Motrin seems to be the wonder drug. I hate to give her anything but when she is so inconsolable and you know it's because something hurts, how can you not? No teeth yet, and no solids either! She is growing like a weed, and her thighs speak volumes for the amount of calories she is managing to take in.
We were supposed to have Haydn, Alena, and Liam this weekend, but we are not entirely better, and we are likely still somewhat contagious. It is better for us and for them if we hold off another week or so.
Well, I had better go- we have to head to Ellsworth! If anyone stumbles across this and needs more detailed background information, feel free to ask.
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