To dream...perchance to sleep! I've been absent from my updating duties because we've been a hot mess lately! Nasty colds have overtaken our household including coughs, croup for Ty and suspicious ear pain for James along with a lot of very short nights. In short - by the time I get to the computer at the end of the day all I want to do is shut it off. Hopefully we have turned a corner and are ready to be done with our summer colds soon!
Despite all that we have been having an outrageously fantastic time with Hailey and Bri who came for a visit and a california-style vacation. I think Jamie has learned more from them in the last few days then in weeks of therapy; they have been so kind and loving and careful with him and he is so eager to please them - what an amazing thing it has been to watch.
Hopefully I'll have something more fun to report on and more energy with which to report it soon!
sweet dreams :)
Friday, July 27, 2012
Thursday, July 5, 2012
Zany
A little update on Zany - some of you know that Zany has a cat disease called FIP - terminal with no known treatment. The timeline they gave us was somewhere between 1 month and 6 months. He has lost 1lb 2 ounces in the last 2 weeks (which at 8lbs now has him down to skin, bones and big heart). The vet says that the decline is not painful and we see that he is amazingly spry - very loving still and appears quite happy so we are feeling extremely lucky and grateful for that.
After 11 years of him sleeping every night on my left shoulder I'm not quite sure what I'll do without him. But for now he is still there every night, even waiting patiently if I get up to attend to Ty in the wee hours, he always has a purr to welcome me back to bed. What would life be without such friends as these? Thinking of losing Zany makes me also think of the other wonderful animals that have graced my life...Cloud, Chaos, Hessie, Tinish, Ishi, Annie, Puck, Trumpkin, Luke and Leia - what a gift to have shared my life with these priceless friends. I don't think there has ever been a person luckier then me.
You see James
Boys and cars! Gotta love it that he asked!
Someone commented recently that learning about all of this with Jamie was very sad. Sad because it could mean a hurdle he may struggle with his entire life. This was a person who knows Jamie intimately and who rarely views him with sadness but instead reacts to anything he does with love, caring and understanding and who also knows not to take any of his b.s.! When LE and I were talking about this she stated very succinctly that putting it in writing felt hard because it highlights the diagnosis and changes the way we view things.
I start to hyperventilate if I go to that place...a diagnosis, a disease, a neurological problem in his brain....it can make me cry at the drop of a pin until I remember that there is no power in that if I just 'see James'. LE pointed out that if you put the autism on the back burner and just see James that we can then remember that he is still our wonderful little boy and very much a fantastic individual who just happens to be working harder on things that may come easier to others.
Tonight Papi made hamburgers - a treat that Jamie had enjoyed a lot at yesterdays 4th of July barbeque! When the tray of burgers came in James was thrilled, dancing around singing about how delicious they were...just one problem: he didn't want us to move or touch them! Instead he decided that they were to be admired - instructing Papi to "eat your salad" so that the plate of burgers could be properly revered. The worst part of it was that we were hungry but it was so darn cute none of us could stop him without laughing! Fortunately the lure of Handy Manny was sufficiently overpowering and the burgers were enjoyed in taste as well as in sighting. The moral: Jamie enjoyed our burgers for all the joy they can bring and we will do the same with him.
Tuesday, July 3, 2012
Future cupcake-eating-contest grand champion
Now that we have gone gluten free and casein free cupcakes are a little harder to come by. There is a great little gluten free bakery in Encinitas however we learned the hard way yesterday that they don't always have dairy free items as well! Seriously????? After having three different kinds of GFCF cupcakes there last week, now they have NONE? I had promised one to Jamie and I thought he was gonna go completely postal on me when denied....it's a good thing I don't endorse violence in front of my kids or I would have rearranged that baker womans face.
After a tiny freakout we made it back to the car where I discovered - low and behold - a jelly bean is pretty much almost as good as a cupcake.....who knew? Happy candy eating!
No Tears! :)
The past week found our sweet Jamie in tears for the first 30-45 minutes of school - a state that left all of us around him feeling sad and helpless. So many people in his life are trying so very hard to help him feel safe, confident and secure and yet we continually find that there is no easy answer to his anxiety. Not long ago a speech therapist asked me what kinds of anxiety I thought he was experiencing and I answered "sensory, situational, separation and irrational" and she responded that I was wrong - there is no irrational anxiety. It stuck in my mind because I was a bit defensive that she said I was wrong! What I had meant was that it felt irrational for Jamie to be anxious when our loving dog Karma barks since he adores her otherwise or when I go upstairs to change clothes, even when he can see me and I do this everyday. However now I can see what she meant - that something that feels irrational to me is very genuinely scary or upsetting to him even though I don't understand it.
I think that kids this age must generally find the world to be a profoundly confusing place regardless of their neurological function! Words with multiple meanings, literal interpretations that go unexplained and no control over anything in their world must make for a constant feeling of intellectual vertigo. So they must find ways to cope, strategies to feel grounded and a basic sense of faith. I am hoping with all my heart that we can teach this to Jamie in a way that sticks. The good news is that today the teacher reported that there were NO TEARS today, and included a smiley. This is his 7th day with summer school and I have fingers crossed that he is moving into a happy place there. Regardless of the coming days, I will take every no tears/smiley face day with joy.
I am also looking for answers still...today I found a homeopathic therapy called CEASE therapy. I have serious reservations about it as the practitioners involved seem to harbor some conspiracy theory ideas about vaccine by-products and autism which I find difficult to buy into based on the sheer mass of vaccine data that has been reviewed by the medical community in recent years. I would assume that this treatment couldn't hurt Jamie but it may hurt the pocket book as the initial consultation alone is $400. I seem to be grasping for a reason to believe in it though, as there are some tempting claims about "curing" autism and soothing the injured areas of the brain. I know in my heart that I am vulnerable to these types of claims and that I am desperate for something miraculous to occur - something just to take away his fears, that's all I need. I'm not sure how to proceed as I don't want to be taken advantage of by charlatans and I also don't want to miss something that could potentially help my child. Any advice would be well received.
On another note, Happy Independence Day tomorrow! Independence. A nice thing to ruminate on.... my best wishes for us all to maintain happiness and independence :)....with no tears :)
I think that kids this age must generally find the world to be a profoundly confusing place regardless of their neurological function! Words with multiple meanings, literal interpretations that go unexplained and no control over anything in their world must make for a constant feeling of intellectual vertigo. So they must find ways to cope, strategies to feel grounded and a basic sense of faith. I am hoping with all my heart that we can teach this to Jamie in a way that sticks. The good news is that today the teacher reported that there were NO TEARS today, and included a smiley. This is his 7th day with summer school and I have fingers crossed that he is moving into a happy place there. Regardless of the coming days, I will take every no tears/smiley face day with joy.
I am also looking for answers still...today I found a homeopathic therapy called CEASE therapy. I have serious reservations about it as the practitioners involved seem to harbor some conspiracy theory ideas about vaccine by-products and autism which I find difficult to buy into based on the sheer mass of vaccine data that has been reviewed by the medical community in recent years. I would assume that this treatment couldn't hurt Jamie but it may hurt the pocket book as the initial consultation alone is $400. I seem to be grasping for a reason to believe in it though, as there are some tempting claims about "curing" autism and soothing the injured areas of the brain. I know in my heart that I am vulnerable to these types of claims and that I am desperate for something miraculous to occur - something just to take away his fears, that's all I need. I'm not sure how to proceed as I don't want to be taken advantage of by charlatans and I also don't want to miss something that could potentially help my child. Any advice would be well received.
On another note, Happy Independence Day tomorrow! Independence. A nice thing to ruminate on.... my best wishes for us all to maintain happiness and independence :)....with no tears :)
Tuesday, June 26, 2012
"Miss Stephanie's NOT going to vacuum!"
Happy 9 month birthday to our sweet Ty baby! This months checkup showed him in the 97th percentile for weight at a strapping 25.4 lbs and 52nd percentile for height at almost 29 inches. This may be why Andrew frequently refers to him as "Morty- the car salesman from Chicago". In gum breaking news for Ty he also showed his first teeth this week - two front, bottom razors - nearly ready to chomp into his first steak now! No crawling yet but some very impressive backwards scooting and teradactal noises to go along.
Jamie started summer school on Monday and for a kid who craves routine, predictability and low-stimulus environments, he is doing amazingly well. He has a little stress about it but still happily runs to haul his backpack into the van each morning and has even told us about a new friend at school...we hope someday to meet the mysterious Malia he is talking about :) but none of us dare show our faces at school yet. With perfect summer weather, the last two evenings had us in the pool before bedtime. The warm water, soft breeze and calm company were the perfect combination to get Jamie and Daddy swimming away "in the big pool" - a great stride forward in comfortability and something he is really proud of himself for. It is so incredible to watch them together.
My title today "Miss Stephanie's NOT going to vacuum!" is a direct (and much repeated) quote from Jamie when told that a nice woman from Regional Center was coming to play recently. It was poignant to me as a glimpse into his world...his worries about who and what are going to happen next and his need to feel some sense of control over it.
Hope things are well in your world and remember...when in doubt, don't vacuum.
Jamie started summer school on Monday and for a kid who craves routine, predictability and low-stimulus environments, he is doing amazingly well. He has a little stress about it but still happily runs to haul his backpack into the van each morning and has even told us about a new friend at school...we hope someday to meet the mysterious Malia he is talking about :) but none of us dare show our faces at school yet. With perfect summer weather, the last two evenings had us in the pool before bedtime. The warm water, soft breeze and calm company were the perfect combination to get Jamie and Daddy swimming away "in the big pool" - a great stride forward in comfortability and something he is really proud of himself for. It is so incredible to watch them together.
My title today "Miss Stephanie's NOT going to vacuum!" is a direct (and much repeated) quote from Jamie when told that a nice woman from Regional Center was coming to play recently. It was poignant to me as a glimpse into his world...his worries about who and what are going to happen next and his need to feel some sense of control over it.
Hope things are well in your world and remember...when in doubt, don't vacuum.
Friday, June 22, 2012
Thursday, June 21, 2012
Where do we begin?
Good evening and thank goodness for wine! It's mid June and it has finally become apparent that others may want to know what is going on with us the last year or so; and with a large glass of wine I can begin.
Overall, things are great - fantastic even; with two gorgeous, wonderful boys, fulfilling jobs and so many wonderful friends and family in our lives. But there are moments that are very hard, harder than they should be. As I type this I can hear my sweet baby crying and it breaks my heart a little more. Almost every day when I talk to people I think "they can't even begin to understand" so even though it brings tears to my eyes - I want to try to explain- some of how it feels and mostly what is happening.
A timeline of James: As a baby, James was adorable and practically perfect - a sweet, loving little cherub who met all of his developmental milestones on time or early (except for crawling, which he never did). He had tons of words, great eye contact and smiles and walked at 11 months with good balance. There were little things we noticed such as a very sensitive gag reflex (Gram you will remember forever the avocado incident!) and a propensity to fall straight backwards without being able to catch himself or a sensitivity to noise but for the most part we just enjoyed our darling baby. He started having quite severe separation anxiety around 18 months - a time that was difficult for me as his mother because I was both devastated by his reaction when I left him and embarrassed by people telling me that it was my fault and that I was coddling him too much.
In January of 2011 we enrolled James in Montessori preschool with much reassurance that he would get used to it and stop crying.....3 months later he would only stop crying to repeat phrases over and over again. We thought the teacher just didn't like him (I'm sure she didn't because he cried so much!) and took him for a developmental assessment with our pediatrician in April. That doctor evaluated him and said he was fine - if anything gifted with an incredible memory and strong intellect. In August we took him to another pediatrician for his 3 year check up and while he passed all of her little tests she was concerned that he was "quirky" enough to justify a more thorough eval. We were referred to Rady Children's Hospital and attended an eval there with 2 Ph.d Developmental Psychologists on Oct 13th 2011 (with a three week old Ty in tow). Of course James charmed them and impressed them...we were all shocked when they came back with a diagnosis of 299.00 Autism.
I think I was numb to it when they put the paper in front of me - tiny Ty in my arms and James playing happily with a Thomas the train on the floor. I remember smiling as if to reassure the evaluators and everyone that we were still really fine. We talked nonchalantly that week about how diagnosis' like these were given so that more kids could get services and how he never would have been diagnosed 5 years prior. We decided to not tell anyone about the "A" word as they wouldn't understand and would treat James differently. Instead we told people that he has a sensory processing disorder - which is a part of his diagnosis but not the whole shebang. In reality, we were in denial. The other piece of that is that being given a label for James did not in any way change him or our family- he was still the same child.
I did and still do feel incredibly lucky that James is otherwise healthy and I am trying every day to understand what is happening to him and how I can help him. The only thing I want for him is to be happy. I remember telling the evaluator - "he has so much anxiety, but he's such a sweetheart - he's not an anxious kid it just comes out. How do I take his fear away?" Now I ask everyone that - how can we help him feel happy and less worried...but it is part of autism. That is the main reason I want more people to talk about this - to network and share and come up with solutions. I also don't want autism to be something to be ashamed of. One physician equated autism with migraines or seizures... it is a neurological disorder that we don't fully understand yet.
Next chapter- we took our newly minted 299 and brandished it like a silver cross to all sorts of agencies to see what they would give us. It was a miracle that I was on maternity leave and able to act as a full time advocate or the process may have taken forever but now we have a pretty comprehensive set of services and hopefully a therapeutic and educational environment for James. We came to understand that James has some pretty classic symptoms of high functioning autism and some issues with sensory processing - primarily auditory and vestibular. He has no cognitive delay and has a profoundly strong memory but it is amazing that he learns so well given a very short attention span and difficulty with motor planning and pragmatic skills.
After another evaluation by the school district and a state agency called Regional Center James started school at Flora Vista Elementary special day preschool on January 14th 2012. He takes a transport van that picks him up and drops him off at our house and he grabs his backpack and cheerfully runs to greet the driver every day (I previously could never have conceived of this!!!). He has school for a half day that includes some speech and OT and in addition he has private speech therapy twice a week, occupational therapy twice a week, ABA therapy in our home 5 days a week and therapeutic listening twice a day for 30 minutes. It's a pretty full schedule :). We have also recently adopted a gluten free/casein free diet and are consulting a homeopath.
In the last nine months many things have changed: our perspectives, our attitude, our home and most importantly our goals. James is progressing rapidly. Shortly after he started school he began telling us that his name is "Jamie" and that is how everyone at school knows him - an adjustment for us but super easy when you hear his cute voice tell you that his "real" name is Jamie William Simons. I think it makes him sound kind of Irish but with those gorgeous green eyes he can pull off anything.
Here are some ways that Jamie has changed: he can now ride a bike, he tries new foods and eats with utensils, he colors, he follows directions, he is aware of his own safety, he can adjust to new people, he can tolerate most sounds. There are days and even weeks when things seem to be going fantastically and when you can't tell that anything at all is up...then there are days and yes weeks when things unravel completely and everything from sleeping to eating to just playing get really, really hard.
It would be lovely to simplify autism and just say that Jamie needs to "try harder" or that we need to "have better discipline" in our parenting and that all would be fixed. However, like most things it is more complicated than that and we are doing the best that we can. It is thought that the human brain is constantly re-wiring and subject to be changed throughout life but that it may be particularly plastic before the age of 5. That is why we have so many therapies in place now and why we reach out to anyone who may have ideas. If you have heard about something that may help - even if it sounds bizarre - please let us know.
In a related topic - a strong genetic link has been identified for autism and siblings are at a 1 in 5 risk. We enrolled Ty in a study at UCSD and he has participated in visual, developmental and brain wave testing since he was 3 months. At 1 year of age they will be able to give us some concrete information about Ty and will continue to study his progress until age 3 regardless. So far we have found that he makes great eye contact, vocalizations and smiles and laughs easily so at the very least we are feeling relieved that he doesn't appear to have a severe form of autism.
In all honesty, this past year has been really quite weird - a mixture of total joy, confusion and exhaustion. I want all of our family and friends to feel included and valued as you very much are - we all feel so supported and loved by you all and so grateful to have you in our lives. I also want to thank you for your patience and understanding when I do stuff that looks bizarre or forget to call you back!
Periodically I will try to update - we have some hilarious stories now and then and some great pictures too. Thanks for reading~
Jen
Overall, things are great - fantastic even; with two gorgeous, wonderful boys, fulfilling jobs and so many wonderful friends and family in our lives. But there are moments that are very hard, harder than they should be. As I type this I can hear my sweet baby crying and it breaks my heart a little more. Almost every day when I talk to people I think "they can't even begin to understand" so even though it brings tears to my eyes - I want to try to explain- some of how it feels and mostly what is happening.
A timeline of James: As a baby, James was adorable and practically perfect - a sweet, loving little cherub who met all of his developmental milestones on time or early (except for crawling, which he never did). He had tons of words, great eye contact and smiles and walked at 11 months with good balance. There were little things we noticed such as a very sensitive gag reflex (Gram you will remember forever the avocado incident!) and a propensity to fall straight backwards without being able to catch himself or a sensitivity to noise but for the most part we just enjoyed our darling baby. He started having quite severe separation anxiety around 18 months - a time that was difficult for me as his mother because I was both devastated by his reaction when I left him and embarrassed by people telling me that it was my fault and that I was coddling him too much.
In January of 2011 we enrolled James in Montessori preschool with much reassurance that he would get used to it and stop crying.....3 months later he would only stop crying to repeat phrases over and over again. We thought the teacher just didn't like him (I'm sure she didn't because he cried so much!) and took him for a developmental assessment with our pediatrician in April. That doctor evaluated him and said he was fine - if anything gifted with an incredible memory and strong intellect. In August we took him to another pediatrician for his 3 year check up and while he passed all of her little tests she was concerned that he was "quirky" enough to justify a more thorough eval. We were referred to Rady Children's Hospital and attended an eval there with 2 Ph.d Developmental Psychologists on Oct 13th 2011 (with a three week old Ty in tow). Of course James charmed them and impressed them...we were all shocked when they came back with a diagnosis of 299.00 Autism.
I think I was numb to it when they put the paper in front of me - tiny Ty in my arms and James playing happily with a Thomas the train on the floor. I remember smiling as if to reassure the evaluators and everyone that we were still really fine. We talked nonchalantly that week about how diagnosis' like these were given so that more kids could get services and how he never would have been diagnosed 5 years prior. We decided to not tell anyone about the "A" word as they wouldn't understand and would treat James differently. Instead we told people that he has a sensory processing disorder - which is a part of his diagnosis but not the whole shebang. In reality, we were in denial. The other piece of that is that being given a label for James did not in any way change him or our family- he was still the same child.
I did and still do feel incredibly lucky that James is otherwise healthy and I am trying every day to understand what is happening to him and how I can help him. The only thing I want for him is to be happy. I remember telling the evaluator - "he has so much anxiety, but he's such a sweetheart - he's not an anxious kid it just comes out. How do I take his fear away?" Now I ask everyone that - how can we help him feel happy and less worried...but it is part of autism. That is the main reason I want more people to talk about this - to network and share and come up with solutions. I also don't want autism to be something to be ashamed of. One physician equated autism with migraines or seizures... it is a neurological disorder that we don't fully understand yet.
Next chapter- we took our newly minted 299 and brandished it like a silver cross to all sorts of agencies to see what they would give us. It was a miracle that I was on maternity leave and able to act as a full time advocate or the process may have taken forever but now we have a pretty comprehensive set of services and hopefully a therapeutic and educational environment for James. We came to understand that James has some pretty classic symptoms of high functioning autism and some issues with sensory processing - primarily auditory and vestibular. He has no cognitive delay and has a profoundly strong memory but it is amazing that he learns so well given a very short attention span and difficulty with motor planning and pragmatic skills.
After another evaluation by the school district and a state agency called Regional Center James started school at Flora Vista Elementary special day preschool on January 14th 2012. He takes a transport van that picks him up and drops him off at our house and he grabs his backpack and cheerfully runs to greet the driver every day (I previously could never have conceived of this!!!). He has school for a half day that includes some speech and OT and in addition he has private speech therapy twice a week, occupational therapy twice a week, ABA therapy in our home 5 days a week and therapeutic listening twice a day for 30 minutes. It's a pretty full schedule :). We have also recently adopted a gluten free/casein free diet and are consulting a homeopath.
In the last nine months many things have changed: our perspectives, our attitude, our home and most importantly our goals. James is progressing rapidly. Shortly after he started school he began telling us that his name is "Jamie" and that is how everyone at school knows him - an adjustment for us but super easy when you hear his cute voice tell you that his "real" name is Jamie William Simons. I think it makes him sound kind of Irish but with those gorgeous green eyes he can pull off anything.
Here are some ways that Jamie has changed: he can now ride a bike, he tries new foods and eats with utensils, he colors, he follows directions, he is aware of his own safety, he can adjust to new people, he can tolerate most sounds. There are days and even weeks when things seem to be going fantastically and when you can't tell that anything at all is up...then there are days and yes weeks when things unravel completely and everything from sleeping to eating to just playing get really, really hard.
It would be lovely to simplify autism and just say that Jamie needs to "try harder" or that we need to "have better discipline" in our parenting and that all would be fixed. However, like most things it is more complicated than that and we are doing the best that we can. It is thought that the human brain is constantly re-wiring and subject to be changed throughout life but that it may be particularly plastic before the age of 5. That is why we have so many therapies in place now and why we reach out to anyone who may have ideas. If you have heard about something that may help - even if it sounds bizarre - please let us know.
In a related topic - a strong genetic link has been identified for autism and siblings are at a 1 in 5 risk. We enrolled Ty in a study at UCSD and he has participated in visual, developmental and brain wave testing since he was 3 months. At 1 year of age they will be able to give us some concrete information about Ty and will continue to study his progress until age 3 regardless. So far we have found that he makes great eye contact, vocalizations and smiles and laughs easily so at the very least we are feeling relieved that he doesn't appear to have a severe form of autism.
In all honesty, this past year has been really quite weird - a mixture of total joy, confusion and exhaustion. I want all of our family and friends to feel included and valued as you very much are - we all feel so supported and loved by you all and so grateful to have you in our lives. I also want to thank you for your patience and understanding when I do stuff that looks bizarre or forget to call you back!
Periodically I will try to update - we have some hilarious stories now and then and some great pictures too. Thanks for reading~
Jen
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