Sam has developed a new frustration. He loves to play with plastic drinking straws. They keep him busy and out of trouble so I buy them in bulk! He has a box with slits in the tops into which he can drop the straws and then retrieve them. He does the same thing outside on the deck - he drops the straws through the spaces between the boards of the deck and then goes under to get them (there is room for him to go under relatively comfortably). Lately, when he drop them through the boards of the deck he starts whining and crying when they fall. He cries the whole time he walks to go get them. Due to the way he chews them, some of the straws don't fall but many of them do. I try to explain that if he drop them they are likely to fall. Of course he doesn't know what I am saying but I try. He does it again and again and again and again. . . Part of me wonders if perhaps part of his brain is tired of this stim/perseveration but another part won't let him stop.
On the adoption front, everything is on hold. After getting the letter about training, rushing around trying to arrange a babysitter and finding one, I got a call saying they have too many families interested in that particular program right now so we have to wait. If we do everything now it will might expire before we get a referral/placement. We have to talk again and decide if this is still the way we want to go. We know we want a third child but which route?
Tuesday, May 11, 2010
Sunday, May 2, 2010
5
Sam is 5. Actually he has been 5 since April 26th but I haven't had time to write about it. I sent cupcakes to school and picked up an ice cream cake on my way home from work. I hoped that all the sugar might signal something in his brain and make him realize that it was a special day. He allowed me to put the paper crown his school sent home on his head for a photo at the dinner table. Then he willingly let his sister steal it because he hates hats. He seemed happy.
Medication update - we continue on this path for now. No miracles yet but we have noticed a slightly increase in his abilty to understand and follow directions. What I had really hoped for - a decrease in the CONSTANT stimming- has not happened. I am eagerly avaiting the results of Ohio State Medical's study on mecamylamine. I don't know why I have a gut feeling about that one; I am far from qualified.
Other stuff - we are considering adoption (from foster care). Family members: I know we haven't discussed this with you so please don't be upset with us if this is the first you hear of it. We just don't want to have to justify our decision right now. We are aware we have a lot on our plate and we are aware that this is not an easy road to travel. We have been speaking with families who have been through it and we are hearing about the good and the bad. We know we want a third child, we know we have always been interested in adoption, and we know a lot about getting services for special needs. We know that is we do this we will need help )like a sitter once a week so I can run errands) We feel we have a particular set of skills now that would make us good at parenting a child who is at high risk for various forms of special needs. We are in the exploration phase. I attended an initial orientation with another family I know. We registered our interest with Children's Aid and we are having an initial safety inspection this week when we will get more information about the state's requirements. We may learn that we cannot meet their reqirements. Or they may say we need really expensive work on our home that we can't do right now. We will see. Since , at the moment, we are only open to infant or toddler adoption, they may say that my needing to work full time as a teacher disqualifies us. We also may not be able to complete the required 27 hours of training this May (anyone want to watch my kids monday and wednesday nights????). SO there are many unknowns but we would like to figure out if this is a possibility for us.
If you would like to speak to me about this please do but leave out phrases like "taking on another problem" "asking for trouble". I will completely tune you out once I hear those things. As the parent of a special needs child and as a high school teacher, I can tell you that I have see just as many "problems" in families with biological children as with adopted.
Medication update - we continue on this path for now. No miracles yet but we have noticed a slightly increase in his abilty to understand and follow directions. What I had really hoped for - a decrease in the CONSTANT stimming- has not happened. I am eagerly avaiting the results of Ohio State Medical's study on mecamylamine. I don't know why I have a gut feeling about that one; I am far from qualified.
Other stuff - we are considering adoption (from foster care). Family members: I know we haven't discussed this with you so please don't be upset with us if this is the first you hear of it. We just don't want to have to justify our decision right now. We are aware we have a lot on our plate and we are aware that this is not an easy road to travel. We have been speaking with families who have been through it and we are hearing about the good and the bad. We know we want a third child, we know we have always been interested in adoption, and we know a lot about getting services for special needs. We know that is we do this we will need help )like a sitter once a week so I can run errands) We feel we have a particular set of skills now that would make us good at parenting a child who is at high risk for various forms of special needs. We are in the exploration phase. I attended an initial orientation with another family I know. We registered our interest with Children's Aid and we are having an initial safety inspection this week when we will get more information about the state's requirements. We may learn that we cannot meet their reqirements. Or they may say we need really expensive work on our home that we can't do right now. We will see. Since , at the moment, we are only open to infant or toddler adoption, they may say that my needing to work full time as a teacher disqualifies us. We also may not be able to complete the required 27 hours of training this May (anyone want to watch my kids monday and wednesday nights????). SO there are many unknowns but we would like to figure out if this is a possibility for us.
If you would like to speak to me about this please do but leave out phrases like "taking on another problem" "asking for trouble". I will completely tune you out once I hear those things. As the parent of a special needs child and as a high school teacher, I can tell you that I have see just as many "problems" in families with biological children as with adopted.
Thursday, April 8, 2010
A little More Positive
I spoke at Barnard College a couple of days ago - it was a developmental psychology class (one I took when I went there). I was just there to give an overview of Autism from a paretn's perspective. I had a great and I met some great students. One of the things I touched on at the end of the presentation is the endless tug of war between grief and acceptance when you have a special needs child. In the moments of grief, it can feel all-consuming. THe life you planned work, worked for, felt you deserved is gone. You rage against this new life. It is not like getting stuck in Holland when you planned on going to Italy (I don't care for that essay). It is more like never getting to leave the airplane. All the other passengers get off and head to their destination but you are stuck and feeling more clostrophobic by the minute.
On the other hand, there are moments of acceptance. TImes when you can relish your child's efforts and accomplishments. The highs are higher because of the lows. I remember that Sam potty trained nearly a year ago today. He had just turned 4. I couldn't believe it was real. i was just entering panic mode because he was about to outgrow size 6 diapers. But he did it and it stuck. I try to remind myself of moments like that on the days that I feel tugged toarads grief.
On the other hand, there are moments of acceptance. TImes when you can relish your child's efforts and accomplishments. The highs are higher because of the lows. I remember that Sam potty trained nearly a year ago today. He had just turned 4. I couldn't believe it was real. i was just entering panic mode because he was about to outgrow size 6 diapers. But he did it and it stuck. I try to remind myself of moments like that on the days that I feel tugged toarads grief.
Not an Autism post
Back when we thought we would adopt (probably from Ethiopia) I began following this blog.
http://bottomlysandethiopia.blogspot.com/
They are doing a give-away for a piece of jewelry by a great artist on etsy.com Junkposse jewelry - love it!
We don't know if we will still adopt. We are looking into foster care adoption (which I know probably sounds strange after my last post) and we have the initial paperwork. More about that later.
http://bottomlysandethiopia.blogspot.com/
They are doing a give-away for a piece of jewelry by a great artist on etsy.com Junkposse jewelry - love it!
We don't know if we will still adopt. We are looking into foster care adoption (which I know probably sounds strange after my last post) and we have the initial paperwork. More about that later.
Wednesday, April 7, 2010
Warm Weather
I met with Sam's case manager and teachers last week. He needs a re-evaluation for primary school. His speech therapist, who I love, has been testing the FM system with him. SHe feels it is not hleping and, in fact, might be making things worse for him. I am not sure how to react. I don't feel that a coulel of weeks is enough time to evaluate something like that but the loaner is only available for a month. I am not sure whether to argue about this. I was so sure it would help and it is hard to accept that I might be wrong. But, I have faith in this speech therapist so I think on this issue, I am going to defer to her and not make a stink.
This is a hard time of year for a few reasons. As the weather warms up, we get the pleasure of going outside but along with that come feelings of intense grief and jealousy (at least for me). It is hard to watch the neighbors standing outside chatting while their kids ride bikes, play ball, and/or chase each other. I used to be out there with them. We can't do that anymore. Sam would run away, eat someone's plants and generally get in trouble if we tried. So we stay in the backyard. We are lucky that we have been able to make the yard a usable space. We have a swingset, trampoline and a deck so it is a nice place to play. From our backyard I can see the local park. It is little league season. Sam can't play. He doesn't care or even know what he is missing but it makes me sadder than you can possibly imagine. I know that I am griving for myself more than for Sam - like I said, it doesn't matter to him. I am sad that he can't understand or enjoy a sport, I am sad that he can't make friends or be part of a team and I am sad that I can't bond with the other moms. It is very lonely.
I try to get us out of the house as much as possible when the weather is nice so we go to fenced in playgrounds in nearby towns. I have to picked fenced in places because if Sam takes off, I ca't leave Maya to tke off after him. People tend to stare at Sam. I don't blame them. We are born with the habit of tuning in to what is different. No one has ever said anything hurtful. I guess I am lucky. Sam tends to put sticks in his mouth at the park. I try to bring him nice clean straws to substitute. SOme parent will usually signal to me and tell me "Did you know he has something in his mouth?" I know they mean well but yes, I know. If I could change it I would. Kids often get a little freaked out by Sam's hooting noises and they often very loudly yell to mom, "Why is he doing that?" Again, I don't blame them, they are just being kids. Hopefully their parents will use it as a teachable moment. As Sam gets bigger he is more and more conspicuous
No real news on the medication. I don't see huge changes at home - a bit more intense eye contact. School reports changes (and I didn't tell them about the new med at first). They feel is concentration has been better since we started a few weeks ago. We will talk it over with the neurologist in a couple of weeks.
Sam will be five soon. When we entered this world of Autism, I thought we would be considering mainstreaming by now. We are so far from that possibility. Like I said- grief.
This is a hard time of year for a few reasons. As the weather warms up, we get the pleasure of going outside but along with that come feelings of intense grief and jealousy (at least for me). It is hard to watch the neighbors standing outside chatting while their kids ride bikes, play ball, and/or chase each other. I used to be out there with them. We can't do that anymore. Sam would run away, eat someone's plants and generally get in trouble if we tried. So we stay in the backyard. We are lucky that we have been able to make the yard a usable space. We have a swingset, trampoline and a deck so it is a nice place to play. From our backyard I can see the local park. It is little league season. Sam can't play. He doesn't care or even know what he is missing but it makes me sadder than you can possibly imagine. I know that I am griving for myself more than for Sam - like I said, it doesn't matter to him. I am sad that he can't understand or enjoy a sport, I am sad that he can't make friends or be part of a team and I am sad that I can't bond with the other moms. It is very lonely.
I try to get us out of the house as much as possible when the weather is nice so we go to fenced in playgrounds in nearby towns. I have to picked fenced in places because if Sam takes off, I ca't leave Maya to tke off after him. People tend to stare at Sam. I don't blame them. We are born with the habit of tuning in to what is different. No one has ever said anything hurtful. I guess I am lucky. Sam tends to put sticks in his mouth at the park. I try to bring him nice clean straws to substitute. SOme parent will usually signal to me and tell me "Did you know he has something in his mouth?" I know they mean well but yes, I know. If I could change it I would. Kids often get a little freaked out by Sam's hooting noises and they often very loudly yell to mom, "Why is he doing that?" Again, I don't blame them, they are just being kids. Hopefully their parents will use it as a teachable moment. As Sam gets bigger he is more and more conspicuous
No real news on the medication. I don't see huge changes at home - a bit more intense eye contact. School reports changes (and I didn't tell them about the new med at first). They feel is concentration has been better since we started a few weeks ago. We will talk it over with the neurologist in a couple of weeks.
Sam will be five soon. When we entered this world of Autism, I thought we would be considering mainstreaming by now. We are so far from that possibility. Like I said- grief.
Saturday, March 13, 2010
Judge Not . . . . and an FM system
Judge Not
We recently completed Sam's MRI and it came back normal. It was nice to know that there are no obvious structural problems that will prevent Sam from developing.
The anti-seizure med has yielded unclear results. Sam seems to be making more direct and sustained eye-contact. His receptive language seems to have improved. Just yesterday he got upset that there was a hole in one of his socks so I told him to take them off and throw them away. He did it! That was huge since it was a multi-step process. His mood seems to be better as well. Since the gains are not dramatic, it is not clear whether the gains are due to the med or just development.
The neurologist has put Sam on an ultra-low dose of med number 2. I have been felt tremendous internal conflict over trying this medication. If you asked me a year ago about putting Sam on meds, I would have said certainly not - it would be a last resort. I have recently met a number of families with autistic children who have seen great gains on very low doses of medications. Many have mainstreamed completely by 10. The possibilities are seductive.
BUT, there is such a stigma attached to putting your child on certain medications. It is funny how no one says anything if your child is on asthma medication or allergy pills but as soon as it is for a learning or developmental disability, the judgements begin. Everytime I talk to someone about what is going on with Sam I feel like I have to make very clear that medication is something we are turing to after trying everything else - diets, supplement and tons of behavioral and speech therapy. Seriously, I feel like I have to justify the decisions I make as a parent - to people who don't have a clue what it means to parent a nearly non-verbal child with serious learning issues. I even felt guilty giving Sam Melatonin, a natural supplement, when I realized that he and I couldn't continue to function without sleep. I know that, as a society, we over-medicate. But I have tried not to let this societal truth affect my individual decision making process.
I do not move in this direction lightly or without thorough research. We are not giving up on other therapies but we have to look at Sam's quality of life. Obviously if he has a negative reaction to medication we will take him off of it but if will allow him to "tune in" and learn then he deserves that chance. We, also, deserve that chance. I accept that my life is now dedicated to being his caretaker but if a medication can make it safe for me to take Sam out in public now that he is outgrowing strollers and shopping carts then that is a good thing.
So, this is what we are trying now. I am going to try my best to ignore the slow nods and cautious questions that seem to occur when people are "shocked" at the idea of giving a child medication.
FM System
An additional therapy we are trying is an FM system Sam will try at school. It was recommened to me by another family with an autistic som who recently mainstreamed. Sam will wear a set of headphones and his teacher or aide, whoever he is woring with, will wear a mic so that background noise is filtered out and he can focus on the person working with him. Sam already wears headphones at home for "listening therapy" so that part won't be a problem. I am interested to see how he will respond the the teacher's voice. I brought up the idea to his speech therapist since she will need to oversee it and at first she felt he was too young - but she couldn't tell me why age matters for this type of modification. She spoke to the director and Sam's case manager and they both thought it was a good idea to try. A vendor is sending a sample for a 30 day trial. If we see any benefits the district will buy it for Sam to use at school. Hopefully it will arrive in the next week and we can find out if it helps.
We recently completed Sam's MRI and it came back normal. It was nice to know that there are no obvious structural problems that will prevent Sam from developing.
The anti-seizure med has yielded unclear results. Sam seems to be making more direct and sustained eye-contact. His receptive language seems to have improved. Just yesterday he got upset that there was a hole in one of his socks so I told him to take them off and throw them away. He did it! That was huge since it was a multi-step process. His mood seems to be better as well. Since the gains are not dramatic, it is not clear whether the gains are due to the med or just development.
The neurologist has put Sam on an ultra-low dose of med number 2. I have been felt tremendous internal conflict over trying this medication. If you asked me a year ago about putting Sam on meds, I would have said certainly not - it would be a last resort. I have recently met a number of families with autistic children who have seen great gains on very low doses of medications. Many have mainstreamed completely by 10. The possibilities are seductive.
BUT, there is such a stigma attached to putting your child on certain medications. It is funny how no one says anything if your child is on asthma medication or allergy pills but as soon as it is for a learning or developmental disability, the judgements begin. Everytime I talk to someone about what is going on with Sam I feel like I have to make very clear that medication is something we are turing to after trying everything else - diets, supplement and tons of behavioral and speech therapy. Seriously, I feel like I have to justify the decisions I make as a parent - to people who don't have a clue what it means to parent a nearly non-verbal child with serious learning issues. I even felt guilty giving Sam Melatonin, a natural supplement, when I realized that he and I couldn't continue to function without sleep. I know that, as a society, we over-medicate. But I have tried not to let this societal truth affect my individual decision making process.
I do not move in this direction lightly or without thorough research. We are not giving up on other therapies but we have to look at Sam's quality of life. Obviously if he has a negative reaction to medication we will take him off of it but if will allow him to "tune in" and learn then he deserves that chance. We, also, deserve that chance. I accept that my life is now dedicated to being his caretaker but if a medication can make it safe for me to take Sam out in public now that he is outgrowing strollers and shopping carts then that is a good thing.
So, this is what we are trying now. I am going to try my best to ignore the slow nods and cautious questions that seem to occur when people are "shocked" at the idea of giving a child medication.
FM System
An additional therapy we are trying is an FM system Sam will try at school. It was recommened to me by another family with an autistic som who recently mainstreamed. Sam will wear a set of headphones and his teacher or aide, whoever he is woring with, will wear a mic so that background noise is filtered out and he can focus on the person working with him. Sam already wears headphones at home for "listening therapy" so that part won't be a problem. I am interested to see how he will respond the the teacher's voice. I brought up the idea to his speech therapist since she will need to oversee it and at first she felt he was too young - but she couldn't tell me why age matters for this type of modification. She spoke to the director and Sam's case manager and they both thought it was a good idea to try. A vendor is sending a sample for a 30 day trial. If we see any benefits the district will buy it for Sam to use at school. Hopefully it will arrive in the next week and we can find out if it helps.
Tuesday, January 19, 2010
Abnormal EEG
It took a couple of weeks and many phone calls to get Sam's EEG report. The neurologist, as soon as she got it from the hospital, left me a voice mail message telling me to make an appointment as soon as possible. I think most people expected me to be upset by this. I really wasn't. Look at it this way - Sam is profoundly disabled. This test was either going to come back normal, leaving us exactly where we were before, or abnormal, giving us more to investigate and possibly an action plan. Sam is still very disabled but with the abnormal result and an action plan, at least there is the hope of at least a small amount of improvement.
A certain percentage of the typical population gets abnormal EEG results even if there are no true seizures occuring. A certain percentage of autistic people will also get abnormal results with no real seizure but for autistics, the chance is higher that seizures are occuring. The neurologist wanted to do a video EEG to get more information as to whether we are looking at a seizure disorder but since that involve sticking things to his head and making him stay in a bed for 48 hours, we detemrined that such a test is next to impossible.
The other option, the one we are persuing, is to give Sam a low dose of an anti-seizure med to see if he shows improvement. If he does we move forward. If he doesn't we re-think our plan.
So that is where we are.
If this medication helps Sam I will be incredibly happy. I will also be frustrated. You see, I mentioned concerns about seizures to a number of doctors because Sam had these spasms as a baby that made him rake his face during his sleep and he showed some strange eye movements. It seems like once you have an Autism diagnosis, doctors stop looking for other issues. Only the neurologist felt an EEG was an important step. I first asked about an EEG over 2 years ago when we met with a developmental pediatrician.
Keep your fingers crossed for Sam!
A certain percentage of the typical population gets abnormal EEG results even if there are no true seizures occuring. A certain percentage of autistic people will also get abnormal results with no real seizure but for autistics, the chance is higher that seizures are occuring. The neurologist wanted to do a video EEG to get more information as to whether we are looking at a seizure disorder but since that involve sticking things to his head and making him stay in a bed for 48 hours, we detemrined that such a test is next to impossible.
The other option, the one we are persuing, is to give Sam a low dose of an anti-seizure med to see if he shows improvement. If he does we move forward. If he doesn't we re-think our plan.
So that is where we are.
If this medication helps Sam I will be incredibly happy. I will also be frustrated. You see, I mentioned concerns about seizures to a number of doctors because Sam had these spasms as a baby that made him rake his face during his sleep and he showed some strange eye movements. It seems like once you have an Autism diagnosis, doctors stop looking for other issues. Only the neurologist felt an EEG was an important step. I first asked about an EEG over 2 years ago when we met with a developmental pediatrician.
Keep your fingers crossed for Sam!
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