M just came over to me as I was sitting at my desk. He handed me the Madagascar (or 'Casecar' as he calls it) dvd, looked me in the eye and said, 'thank you.'
Trust me...this is HUGE.
And of course, I had to oblige him because he actually brought something to me (which never happens), and then even asked me for it in the best way he knew how.
This movie makes him wicked anxious. He's buzzing around the room making sounds and then coming back to his spot in front of the tv. By the time we get to the end he will be bouncing a good three feet off of the ottoman. And when it's over...well, there will be a meltdown.
But he asked for it, so who the hell cares?!!!
Thursday, October 22, 2009
Thursday, October 15, 2009
Grab A Tissue
It has been a blessing to have met and connected with so many other parents of children with special needs via the Internet. One such friend, Valerie in Australia, wrote the lyrics and put together the montage for the video below.
I admit to doing some of my not-so-pretty sobbing while watching this. Even as a parent of a child with autism, sometimes I am not as empathetic as I should be to M. It is a very difficult thing to try and understand how something as seemingly benign as the wind, or too much noise could send someone into a complete tailspin; but this is what it is like for many people with autism.
I love you, M, and I promise to do better by you; to understand you, to help ease your fears, and to make you feel safe and secure.
I admit to doing some of my not-so-pretty sobbing while watching this. Even as a parent of a child with autism, sometimes I am not as empathetic as I should be to M. It is a very difficult thing to try and understand how something as seemingly benign as the wind, or too much noise could send someone into a complete tailspin; but this is what it is like for many people with autism.
I love you, M, and I promise to do better by you; to understand you, to help ease your fears, and to make you feel safe and secure.
Friday, October 9, 2009
O Blogosphere, How Small Thou Art
Today I toured another (yes, quite expensive) private autism school. I got total warm fuzzies at this place and really liked what I saw. It gave me another burst of energy to get 'er done once and for all. The other half and I need to have a sincere come to Jesus about all of this. (again)
But the best part of my meeting today? Toward the end of it, the director was talking about how parents of kids with autism have to adapt to this craziness in the public school world (essentially) and realize this is the new norm. I chuckled and said, 'I actually have a blog called This Is My New Normal.' The teacher sitting next to me said, 'Oh my gosh, that's you? I've read your blog!' We all got a good laugh out of that one and I half-seriously asked if I needed to start censoring myself. I suspect that I am safe with this teacher, though. And, S, if you are reading...it was a pleasure meeting you. Thank you for making me feel less insecure in my thoughts that M's current setting sucks the big one :)
But the best part of my meeting today? Toward the end of it, the director was talking about how parents of kids with autism have to adapt to this craziness in the public school world (essentially) and realize this is the new norm. I chuckled and said, 'I actually have a blog called This Is My New Normal.' The teacher sitting next to me said, 'Oh my gosh, that's you? I've read your blog!' We all got a good laugh out of that one and I half-seriously asked if I needed to start censoring myself. I suspect that I am safe with this teacher, though. And, S, if you are reading...it was a pleasure meeting you. Thank you for making me feel less insecure in my thoughts that M's current setting sucks the big one :)
Monday, October 5, 2009
Hopeful Parents!
I'm contributing--however little I may be doing it--at Hopeful Parents today.
Come on over and browse around a bit. There are some really amazing, touching writers over there.
Come on over and browse around a bit. There are some really amazing, touching writers over there.
Wednesday, September 30, 2009
Food For Thought
Last week I took M to a new DAN! practice I had heard great things about. We have been patients of Thoughtful House for nearly two years now and I felt that it was time for a little different perspective as well as making the switch from a practice that was back on the mother ship to one that is local. I have great respect for the practitioners and work done at Thoughtful House, but unfortunately after following protocol there, we have not seen much, if any, change in our little guy.
I really liked the doctor I met with yesterday. I think the other half--who was notoriously skeptical of some of the suggestions at Thoughtful House--would have liked him too. It was sort of like Thoughtful House-light, which is probably good for us.
While he had many of the same beliefs as our old doctor, he also had one that sort of left speechless and with a lot to think about. At the end of our 90-minute appointment I finally got around to the current stage of Miles' developmental history; the part where we have an agitated, sometimes aggressive child on our hands. The doctor asked me what my gut told me is the reason for these new traits. I told him I believed it was his displeasure in a not-right-for-him school setting, to which he immediately replied, 'I put a lot of stock in parents' gut feelings. Take him out of school for three weeks and see what happens.'
WHAT?? Take him out? But...then that means that I have to deal with my inadequacies...my lack of patience for starters. Or my inability to teach anyone how to do anything that doesn't come easily to them. I am acutely aware of my parental shortcomings and have overcompensated in areas of research and networking to somewhat make up for them. I'll be honest: I don't entirely know how to be with M 24/7 for longer than a week and I also know how very important things like speech and occupational therapy are for him. My first thoughts on this suggestion were that it could never happen.
But after giving it some thought, I think it could happen. And I think it could be very telling. However, I think since it's taken us 18 months to go down this hill, it is certainly not going to only take three weeks to go back up it. But if he's happier by the end of it when we check back in with this doctor, we may very well have ourselves a clearer answer of whether or not M's school is the root of his problems.
I have decided that in order to make this experiment a success, I need to set up an intensive private occupational and speech therapy schedule; like maybe 2-3 hours worth, three days a week. M always does well with his private therapists. They get him completely and the work seems like play to him. I think this is the only way we can take him out of a school setting without him losing skills and melting down even more.
I still have to get some other ducks in a row before this can happen. I have to figure out the best approach with the school district, and I need to figure out what three or four weeks make the most sense. The pediatrician flat out told me he would write me a letter saying that M was sick. Wow. This guy is serious!
I guess the biggest thing that concerns me is my fear that I am wrong about this school thing. What if I have used this as my go-to excuse for this regression when really I am just unable to see that this is who M was bound to become and I should accept it and move on? This is scary to me as I really believe that a happier child lies within the one I see before me.
I would love your thoughts on this proposed experiment, especially from you readers who have children with special needs.
I really liked the doctor I met with yesterday. I think the other half--who was notoriously skeptical of some of the suggestions at Thoughtful House--would have liked him too. It was sort of like Thoughtful House-light, which is probably good for us.
While he had many of the same beliefs as our old doctor, he also had one that sort of left speechless and with a lot to think about. At the end of our 90-minute appointment I finally got around to the current stage of Miles' developmental history; the part where we have an agitated, sometimes aggressive child on our hands. The doctor asked me what my gut told me is the reason for these new traits. I told him I believed it was his displeasure in a not-right-for-him school setting, to which he immediately replied, 'I put a lot of stock in parents' gut feelings. Take him out of school for three weeks and see what happens.'
WHAT?? Take him out? But...then that means that I have to deal with my inadequacies...my lack of patience for starters. Or my inability to teach anyone how to do anything that doesn't come easily to them. I am acutely aware of my parental shortcomings and have overcompensated in areas of research and networking to somewhat make up for them. I'll be honest: I don't entirely know how to be with M 24/7 for longer than a week and I also know how very important things like speech and occupational therapy are for him. My first thoughts on this suggestion were that it could never happen.
But after giving it some thought, I think it could happen. And I think it could be very telling. However, I think since it's taken us 18 months to go down this hill, it is certainly not going to only take three weeks to go back up it. But if he's happier by the end of it when we check back in with this doctor, we may very well have ourselves a clearer answer of whether or not M's school is the root of his problems.
I have decided that in order to make this experiment a success, I need to set up an intensive private occupational and speech therapy schedule; like maybe 2-3 hours worth, three days a week. M always does well with his private therapists. They get him completely and the work seems like play to him. I think this is the only way we can take him out of a school setting without him losing skills and melting down even more.
I still have to get some other ducks in a row before this can happen. I have to figure out the best approach with the school district, and I need to figure out what three or four weeks make the most sense. The pediatrician flat out told me he would write me a letter saying that M was sick. Wow. This guy is serious!
I guess the biggest thing that concerns me is my fear that I am wrong about this school thing. What if I have used this as my go-to excuse for this regression when really I am just unable to see that this is who M was bound to become and I should accept it and move on? This is scary to me as I really believe that a happier child lies within the one I see before me.
I would love your thoughts on this proposed experiment, especially from you readers who have children with special needs.
Monday, September 28, 2009
Thank You & Sleep
I truly appreciate all of the love and support I got on the blog and off...means more to me than you could know.
I thought about updating you all on Saturday after a much-needed, too-long-in-the-making, really freaking refreshing night of sleep. But then, I was afraid to jinx said good night of sleep and decided not to mention it.
Well, apparently the inner workings of my brain have some connection to the jinx gods and told them what I'd been thinking, so the bastards went and screwed up our sleep for the next two nights anyway. Sigh...
M has NOT been sleeping for over a week now. We have no idea what is going on with him. I tried to blame it on starting a new probiotic, but I don't think that is really it. He wakes up every single night (except for that amazing Friday) and comes into our room. After that, it is as though he has restless leg syndrome. I can feel his leg twitch-twitch-twitching next to mine when he is actually laying sort of still. And the rest of the time is spent shifting, sleeping upside down and sideways. Oh, and let's not forget the crying and occasional kicks and jabs at our faces. It's clearly terrible for him, and in turn, terrible for us. We're exhausted and don't know what to do to fix the problem.
Sleep was always our check mark in the positive column. Kids with autism are notoriously poor sleepers, but not our M. Our M fell asleep with little to do and stayed asleep until we woke him for school. On weekends, he could sleep until 9 or 10 am. So this new wrench in his schedule has really thrown us for a loop. I have tried melatonin, which does seem to help him with the actual falling asleep part, but certainly doesn't help with keeping him that way.
Do any of you readers have any advice for us? Have any of you in a similar position experienced this sudden HUGE change in behavior and sleep patterns in your autistic child? M is six and I am wondering if this is some sort of hormonal or growth issue. In other words, I am hoping very much that this is just a phase and will pass quickly.
Pardon me...I am about to fall asleep on my keyboard. Time to set the ol' alarm and attempt to catch a few zzz's before I pick M up from school...
I thought about updating you all on Saturday after a much-needed, too-long-in-the-making, really freaking refreshing night of sleep. But then, I was afraid to jinx said good night of sleep and decided not to mention it.
Well, apparently the inner workings of my brain have some connection to the jinx gods and told them what I'd been thinking, so the bastards went and screwed up our sleep for the next two nights anyway. Sigh...
M has NOT been sleeping for over a week now. We have no idea what is going on with him. I tried to blame it on starting a new probiotic, but I don't think that is really it. He wakes up every single night (except for that amazing Friday) and comes into our room. After that, it is as though he has restless leg syndrome. I can feel his leg twitch-twitch-twitching next to mine when he is actually laying sort of still. And the rest of the time is spent shifting, sleeping upside down and sideways. Oh, and let's not forget the crying and occasional kicks and jabs at our faces. It's clearly terrible for him, and in turn, terrible for us. We're exhausted and don't know what to do to fix the problem.
Sleep was always our check mark in the positive column. Kids with autism are notoriously poor sleepers, but not our M. Our M fell asleep with little to do and stayed asleep until we woke him for school. On weekends, he could sleep until 9 or 10 am. So this new wrench in his schedule has really thrown us for a loop. I have tried melatonin, which does seem to help him with the actual falling asleep part, but certainly doesn't help with keeping him that way.
Do any of you readers have any advice for us? Have any of you in a similar position experienced this sudden HUGE change in behavior and sleep patterns in your autistic child? M is six and I am wondering if this is some sort of hormonal or growth issue. In other words, I am hoping very much that this is just a phase and will pass quickly.
Pardon me...I am about to fall asleep on my keyboard. Time to set the ol' alarm and attempt to catch a few zzz's before I pick M up from school...
Wednesday, September 23, 2009
Truth
Dear God,
I know we don't talk as much as we used to. I mean, there's that whole me not attending a church thing and questioning organized groups who follow you.
But I really could use your help right now. I am really struggling. My whole family is really struggling. My little guy's emotions are all over the map and my 60:40 rate in favor of successful outings has taken a drastic nosedive to 70:30 NOT in my favor. The rage I feel over his rage is growing to match; a thing I feel enormous guilt over and realize is the absolute worst thing a Mom can offer her sweet child in his time of needing me most. But how does one stop reacting when each and every day...about five or more times a day...she is pinched to the point of bruising; hit, kicked, and addressed with a clenched jaw and a sound like she is about to be attacked? He may only be six, and he may have low muscle tone, but he is strong and he can hurt. And the worst part? When I reread what I have written here, I feel as though I am describing to you someone other than my child. Someone other than the old soul of a boy I know has the capability of being the most endearing, most beautifully enchanting child...the child who you may not understand, but who haunts you and makes you want to understand.
God, I am scared. I feel desperate to fix this, and yet I am not able. I want to blame it on how very unhappy I know he is in his school placement, and yet I am also scared at the possibility that it is bigger than that. That this is his new normal. Have we entered the point of no return? Is he choosing to more autistic and in his world because it is easier than being a part of ours?
And what is worse, God, is that I--the woman who bore this beautiful, confusing boy--am also the one who instills fear in him. I am the one who has started to not tolerate the 20-minute hysterical meltdown when it is not the movie he wants. The one who will put him in his room immediately because I have no more patience for him reaching for his little brother's neck...even when his little brother sometimes quite knowingly provokes him.
I am the one who yells and cries at him, and then lays next to him because he needs me to make him feel safe as he tries to quiet his body long enough to fall asleep.
If your own mother cannot accept your faults, then who can? Oh, the guilt is almost too much for me to bear.
Please, please, God. If you are out there and you are listening, can you help us? It is bad and I need help.
I cannot do this alone.
Respectfully,
Debbie
I know we don't talk as much as we used to. I mean, there's that whole me not attending a church thing and questioning organized groups who follow you.
But I really could use your help right now. I am really struggling. My whole family is really struggling. My little guy's emotions are all over the map and my 60:40 rate in favor of successful outings has taken a drastic nosedive to 70:30 NOT in my favor. The rage I feel over his rage is growing to match; a thing I feel enormous guilt over and realize is the absolute worst thing a Mom can offer her sweet child in his time of needing me most. But how does one stop reacting when each and every day...about five or more times a day...she is pinched to the point of bruising; hit, kicked, and addressed with a clenched jaw and a sound like she is about to be attacked? He may only be six, and he may have low muscle tone, but he is strong and he can hurt. And the worst part? When I reread what I have written here, I feel as though I am describing to you someone other than my child. Someone other than the old soul of a boy I know has the capability of being the most endearing, most beautifully enchanting child...the child who you may not understand, but who haunts you and makes you want to understand.
God, I am scared. I feel desperate to fix this, and yet I am not able. I want to blame it on how very unhappy I know he is in his school placement, and yet I am also scared at the possibility that it is bigger than that. That this is his new normal. Have we entered the point of no return? Is he choosing to more autistic and in his world because it is easier than being a part of ours?
And what is worse, God, is that I--the woman who bore this beautiful, confusing boy--am also the one who instills fear in him. I am the one who has started to not tolerate the 20-minute hysterical meltdown when it is not the movie he wants. The one who will put him in his room immediately because I have no more patience for him reaching for his little brother's neck...even when his little brother sometimes quite knowingly provokes him.
I am the one who yells and cries at him, and then lays next to him because he needs me to make him feel safe as he tries to quiet his body long enough to fall asleep.
If your own mother cannot accept your faults, then who can? Oh, the guilt is almost too much for me to bear.
Please, please, God. If you are out there and you are listening, can you help us? It is bad and I need help.
I cannot do this alone.
Respectfully,
Debbie
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