Feeling guilty today for not taking action sooner with Jesse...
Jesse had his first appt. with the OT on Thursday and he LOVED every minute. For the rest of the day, he was more relaxed and happy than I had seen him in a long time. She did some testing with him and his visual-motor (drawing) score was well below where it should have been. The visual-spatial (3D matching) score was in the range of a 14 year old. We will see the other test results at his appt. next week.
The lab results from his organic acids test came in the mail today. He's very high in 3 areas and very low in 2. One of the findings indicates a high level of stress. Poor little guy! We'll have more test results soon, but with the high yeast level, I'm pretty sure we're diving into 100% gluten-free and probably yeast-free, too. Glad Jesse likes the GF pancakes...they will have to be the bread for his sandwiches!
Saturday, February 6, 2010
Tuesday, January 19, 2010
Every day begins...
Mornings are supposed to be a fresh start, a clean slate, open to limitless possibilities for the day, right? Most days, I struggle to keep that perspective through the first few hours of my day. The routine is the same every day...I get up and start unloading the dishwasher, get a load of laundry going, prep school assignments and get out all the school supplies. K & J get up and have breakfast and play on the computer. So far, so good. But then H gets up. I have to be right there, the second he comes downstairs, to make sure he takes his meds. immediately. His hyperactivity is in full swing for a good 60-90 minutes after he gets his meds. He can't sit still, he makes constant noises, and pesters his brother & sister to the point of tears. He can't help it and I know that, but what to do to keep my sanity and help K & J survive that hour and a half?
Today, I got upset with K & J...we've been over it a million times...while we wait for Hunter's meds. to kick in, just stay away from him. Don't go into whatever room he's in. They are both old enough to understand that, but every morning, at some point all 3 of them are in the same room, which always leads to name calling, screaming, hitting, kicking, or throwing things, or a combination of all of the above. I sent K & J to their rooms this morning, which hardly seems fair, but I didn't know what else to do. They feel like they're in trouble (but they feel like it's Hunter's fault) and I feel guilty for making them feel that way. Sigh...
Today, I got upset with K & J...we've been over it a million times...while we wait for Hunter's meds. to kick in, just stay away from him. Don't go into whatever room he's in. They are both old enough to understand that, but every morning, at some point all 3 of them are in the same room, which always leads to name calling, screaming, hitting, kicking, or throwing things, or a combination of all of the above. I sent K & J to their rooms this morning, which hardly seems fair, but I didn't know what else to do. They feel like they're in trouble (but they feel like it's Hunter's fault) and I feel guilty for making them feel that way. Sigh...
Saturday, January 16, 2010
Turn down the volume!
It's amazing that my boys only have 2 volume levels...loud and louder. They don't even realize that they are talking WAY louder than anyone else in the room. I would love another weekend retreat of silence! Maybe I'll designate tomorrow as a "whisper day"; no talking aloud... I need to remember to mention volume to J's speech therapist!
I think we may have worked out an OT. How blessed are we that God just drops one in my lap? And not just any one...one that our SLP says is one of the best in this area; one that she knows personally and thinks would be an excellent personality fit for Jesse. The best part? Her clinic takes insurance and since we can come in the morning, there's no waiting list. Thank you, God...you're amazing! Since we will be paying co-pays instead of the entire bill, we may be able to afford a functional behavioral assessment and consultation for Hunter. Wow! That would be HUGE!!
In spite of the volume, this has been...
a good day =)
I think we may have worked out an OT. How blessed are we that God just drops one in my lap? And not just any one...one that our SLP says is one of the best in this area; one that she knows personally and thinks would be an excellent personality fit for Jesse. The best part? Her clinic takes insurance and since we can come in the morning, there's no waiting list. Thank you, God...you're amazing! Since we will be paying co-pays instead of the entire bill, we may be able to afford a functional behavioral assessment and consultation for Hunter. Wow! That would be HUGE!!
In spite of the volume, this has been...
a good day =)
Friday, January 15, 2010
ST & OT
Jesse had a great session with his speech therapist today. They are working on identifying emotions...starting with happy and working toward positive thought patterns and self talk. They started a scrapbook of things that make him happy and one of the pictures he drew was ice cream (a kid after my own heart!) She asked him to write about things that make him happy, but he said he didn't want to write because it hurt. I knew he had been resisting writing more and more, but didn't realize it was physically painful for him. The therapist highly recommended getting J some OT to address the writing issue. His lack of writing when asked is affecting how he sees himself (not good at writing and spelling) and that view will eventually spill over into the larger picture of himself. I think it's already done some of that.
So, I happened to meet an OT last weekend that our ST knows and when I mentioned her, our ST highly recommended her. They used to work together at another clinic. I'm waiting to hear back from the OT regarding cost...they don't take insurance. Not sure how we're going to swing a DAN doctor, ST, AND an OT, but we'll see what happens.
I'm feeling a little guilty because I think Hunter could really benefit from ABA therapy, but that's not covered by insurance either. At least he's getting some counseling and seeing a psychiatrist. I'm hoping to get some guidance counseling next month to determine the best school curriculum for the next 3 years. Another $50 an hour for that. We'll see what finances look like next month...
So, I happened to meet an OT last weekend that our ST knows and when I mentioned her, our ST highly recommended her. They used to work together at another clinic. I'm waiting to hear back from the OT regarding cost...they don't take insurance. Not sure how we're going to swing a DAN doctor, ST, AND an OT, but we'll see what happens.
I'm feeling a little guilty because I think Hunter could really benefit from ABA therapy, but that's not covered by insurance either. At least he's getting some counseling and seeing a psychiatrist. I'm hoping to get some guidance counseling next month to determine the best school curriculum for the next 3 years. Another $50 an hour for that. We'll see what finances look like next month...
Thursday, January 14, 2010
The giants we face...
We need to make sure that we do not compare ourselves to the giants we face, but compare the giants we face to our loving God!
DAN doctor
Just trying to get some thoughts down "on paper" today. Maybe I will sleep better tonight.
Jesse's first appointment with a DAN doctor is next Friday. I'm feeling really mixed about it...nervous about all the tests and what they will show, worried about how drastically we may have to change our diet, but excited about the possibility of significant improvement in reducing Jesse's self injurious behaviors. He has gotten worse over the last year and we can no longer ignore that fact. I had to buzz cut his hair because he would pull it out in clumps when he got frustrated or angry. He also hits himself in the face, bangs his head on walls, breaks things on purpose, hits and/or kicks other people, bites himself, yells at people to "shut up," calls himself stupid, and when he said he didn't want to live anymore, I called the doctor.
Jesse doesn't relate well with his peers. He doesn't seem to understand that his actions in this moment will affect, long term, his relationship with the people around him. He's very frustrated in group settings because he can't seem to get everyone to stop what they're doing and listen to him when he has something to say. He gets upset when other people are not following the rules, but he will sometimes break them himself.
As I'm writing this, I'm thinking, "Why am I having such a hard time accepting his diagnosis? He's just like Hunter was at this age, but without the hyperactivity." I think some of it is just knowing the road over the next few years will be a very difficult one. It's a very fine line to walk between protecting him from too much stimulation (which almost always ends in a bad experience) and preventing him from getting the social interaction he needs to improve his social skills. Jesse loves his Cub Scout meetings and activities, but I get nervous and stressed out before every meeting. I dread taking my boys out anywhere, because I never know how things will go. I almost never take them anywhere together. They feed off of each other and can magnify a meltdown ten fold. It's embarrassing and painful to get obviously disapproving looks from other parents.
School is increasingly difficult because Jesse doesn't like writing. He hates to spell things wrong and shuts down if he does. He has difficulty staying focused and completing tasks. He is always busy playing or fiddling with things, but usually still retains the lesson being taught. In reading out loud, he often will guess at words after seeing the first couple of letters, even if he's familiar with the word. It's like he's in a hurry, but often the words he substitutes don't make sense in the sentence. He still continues to read on without stopping to correct himself. He is easily bored, especially in repetitive, rote activities such as math.
It's getting late, I'm getting tired, and I'm not sure I'm making sense anymore...
Jesse's first appointment with a DAN doctor is next Friday. I'm feeling really mixed about it...nervous about all the tests and what they will show, worried about how drastically we may have to change our diet, but excited about the possibility of significant improvement in reducing Jesse's self injurious behaviors. He has gotten worse over the last year and we can no longer ignore that fact. I had to buzz cut his hair because he would pull it out in clumps when he got frustrated or angry. He also hits himself in the face, bangs his head on walls, breaks things on purpose, hits and/or kicks other people, bites himself, yells at people to "shut up," calls himself stupid, and when he said he didn't want to live anymore, I called the doctor.
Jesse doesn't relate well with his peers. He doesn't seem to understand that his actions in this moment will affect, long term, his relationship with the people around him. He's very frustrated in group settings because he can't seem to get everyone to stop what they're doing and listen to him when he has something to say. He gets upset when other people are not following the rules, but he will sometimes break them himself.
As I'm writing this, I'm thinking, "Why am I having such a hard time accepting his diagnosis? He's just like Hunter was at this age, but without the hyperactivity." I think some of it is just knowing the road over the next few years will be a very difficult one. It's a very fine line to walk between protecting him from too much stimulation (which almost always ends in a bad experience) and preventing him from getting the social interaction he needs to improve his social skills. Jesse loves his Cub Scout meetings and activities, but I get nervous and stressed out before every meeting. I dread taking my boys out anywhere, because I never know how things will go. I almost never take them anywhere together. They feed off of each other and can magnify a meltdown ten fold. It's embarrassing and painful to get obviously disapproving looks from other parents.
School is increasingly difficult because Jesse doesn't like writing. He hates to spell things wrong and shuts down if he does. He has difficulty staying focused and completing tasks. He is always busy playing or fiddling with things, but usually still retains the lesson being taught. In reading out loud, he often will guess at words after seeing the first couple of letters, even if he's familiar with the word. It's like he's in a hurry, but often the words he substitutes don't make sense in the sentence. He still continues to read on without stopping to correct himself. He is easily bored, especially in repetitive, rote activities such as math.
It's getting late, I'm getting tired, and I'm not sure I'm making sense anymore...
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