Moose has amazing therapeutic support through our local Early Childhood Intervention program. Texas is notably terrible at providing social services for children, disabled, and the elderly. I know that in other states, there are kids like Moose who get more from ECI than we do, yet I can attest that Moose gets the max services available from ECI in the state. So, roll call:
1. Physical therapy - we get PT once a week for an hour. It is direct, hands-on therapeutic intervention for 50 minutes, and ~10 min of revisiting goals, writing strategies, and general admin and planning. This was the first therapy added to our plan when we enrolled in ECI when Moose was about 4 months. We originally started with a solid, but less experienced therapist, and transitioned to the PT guru when Moose was about 8 months. Given that gross motor has been vying for greatest area of delay most of his life, having someone very seasoned in this area has been huge for us.
2. Speech / Feeding therapy - once per week for an hour plus. We added speech to Moose's plan between 6-7 months, but only 2x per month. This was because there wasn't much speech therapy you could do for a small infant, and resource constraints with the ECI program. At around 9-10 months I'd been reading about the links between language and cognitive ability, so I asked our neurologist to write Moose a prescription for 4x/month speech and 2x/month feeding intervention. I was then able to negotiate weekly service with our existing therapist, who I like a lot. This area has been the most fluid in terms of what we do, since language-wise Moose is not technically delayed, but at high risk for cognitive deficits and autism. His feeding issues have been more and more pressing, so we are now focusing all 4 monthly visits on feeding interventions and strategies. Our therapist moved her appointment to attend during the class' meal time.
3. Occupational therapy - we get an hour a week of this, and it's solid hands-on play therapy. This was added to our plan early, but we didn't get a therapist assigned until around 8 months due exclusively to resource constraints at the agency and me pitching a very polite tantrum about that not being Moose and my problem. Our wonderful OT comes at the end of the day on Thursday, so Moose doesn't always tolerate a full hour, but he gets at least 35 minutes, and she stays as long as 75 minutes on occasion. OT/fine motor at Moose's age is still pretty integrated with gross motor and core strength, so it's only recently that we've started to see some hallmark fine motor skills like pincer grasp start to emerge. OT also is where we get our sensory processing support, so there is a lot of strategizing about how to diminish or avoid sensory sensitivities.
4. Developmental services - we see a developmental expert once a week for about 45 minutes. She was She comes to Moose's school to meet with us both, but doesn't always do hands-on with Moose. When she does, it's mainly social play and attention activities like peek-a-boo when he was younger and mimicking and turn taking now. One of the big benefits of this resource is that she's very helpful, so I can often ask her for help with an issue or question, and she'll come back the next week with three printouts and a website for me to look into. I also like that this is a little more one-on-one time Moose gets, and with someone who deals with special needs kids all the time, so she's a good second pair of eyes on how Moose is doing.
5. Nutritional support - this was a fairly recent add due to Moose's failure to progress from bottle to purees or table foods. We saw her once a month for 3 months and now were to once every 3 months. I'm honestly not sure that this part of our plan provides anything I couldn't either intuit or google, but sometimes just having time set aside to think and talk through issues is valuable.
We also have an amazing case worker, who I have put on notice that she has to be my BFF when we age out of ECI because I can't live without her. At this point, I have no idea if the conversations we have are on script for her or not, I suspect not, but she is a special needs mom and former therapist who knows how the systems work, plus she's just a neat woman. She coordinates all of the paperwork and insurance so I don't even have to touch that stuff other than to sign things, and she helps me access the team as a resource think tank when big challenges come up.
I attend almost all of these therapy appointments, first of all because I can and I like spending the little bit of extra time with the guapos. I also see my role as a conduit between each of them and back out to the doctors and researchers. But mainly I attend most of the sessions because these ladies are skilled and knowledgeable, and tolerant of me spending most of the time they're working with Moose being peppered with questions. At this point, there's very little about Moose's development that I won't discuss with each of these professionals, because no matter what it is, someone unexpected almost always knew a kid, or read something, or went to a seminar, or noticed this or that with Moose that sheds some light on the issue.
I am routinely humbled by how little I truly know, and by the willingness of others to contribute or even just listen and empathize. If you aren't making the most of your time with the therapists in your life, I encourage you to start nerding out on a therapist near you stat.
Tuesday, February 21, 2012
How I 'Do it All' [insert guffaw here]
We attended a big wonderful family wedding this weekend. All of my husband's aunt and uncles and all of the 15 first cousins were in attendance, among many others. This was the first legit big family event we've attended since the guapos were born, and the first time we have attended an event of any kind since we've come out of the Fragile X closet with our extended family. So, not only were many of the family meeting the boys for the first time, but they have also recently come to know about Moose's diagnosis, his brain surgery, et al.
Mercifully, people were gracious and loving and excited and adoring and interested. I did not at a single moment feel accosted or overwhelmed or uncomfortable about the conversation. I did, however, get a substantial number of variations on the theme 'and you work full time too?'
Yes. And here is 'how':
1. Nothing Trumps a Guapo - Nothing. When I am with Moose and Goose, or having one on one time with one of them, that is all that I am doing. I don't watch tv, do dishes or laundry, take phone calls, or otherwise split time that I have with them. As much as I possibly can, I aim to be 100% present for my precious time with my guapos. I roll around on the floor, tickle, squawk and yell, make messes, eat with them, snuggle and nap with them, play creative games with them, do constructive play and totally free play, stare at the grass, whatever. This is the cornerstone of my whole parenting and life approach. There is a whole lot of things that have to happen to keep our family going, but time with guapos is the whole point of the deal, and it's the very best part of my waking hours, so I try not to waste it.
2. Special Needs School - very little in my kids' life would work the way it does without the support of the special school the guapos attend. They get individualized care and therapy circuits in a mainstream environment. This is the PRIME reason I feel like I am justified keeping my career. Frankly, Miss Liz and here entourage probably do it even better than I could anyway, if for no reason other than sheer resources and experience in child development and special needs. This also keeps the guapos on a reliable schedule, and they are well bonded to their teacher and remain together.
3. Flexible work schedule - This is another HUGE one. I'm a consultant, but the client I work for has had me for 5+ years, so the relationship and hours are very flexible. I can attend all of Moose's therapy, doctor's appointments, run errands, catch up with friends and professional colleagues during lunch hours, and so on as long as my deliverables are always prompt and they are made to feel like they are my priority (which they are, but not the #1 one... I am a consultant, we're like lawyers except that people don't see you coming a mile away). Bottom line, when I'm at home with my boys, they are paramount and I am 100% present, pretty much everyone else get's juggled, and my work life has slowly adapted to that.
4. Project Management mindset - I spend a lot of time planning, assessing risks, delegating & monitoring, and coaching people to get the outcomes I think are important. This is a professional skill set that has refined my inherent OCD and bossy aptitudes into a career and a (mostly) high functioning special needs family. Everything is a task, not just obvious things like scheduling an appointment, but thinking about how to keep connected with friends, or finding encouraging things to say to my husband, or time on Facebook. Tasks constantly get re-prioritized. There is no downtime in my world, unless pre-designated in my mental agenda and executed because something more urgent didn't come up (I plan downtime for myself every single day, and my average of actually getting some is about 60%). I now operate a full tilt, gathering and assimilating information, prioritizing, and carrying out. Time in the shower, the car, a line, etc is used to fill or cross off task lists, either literally or mentally.
5. Less sleep - I used to be a sound sleeper, a morning person, and get a good 8 hours virtually every night. I'm currently laughing out loud from having typed that. I laugh a lot now, but more so I don't cry instead. These days, I average about 5 hours of sleep, six is a real treat. When I am exhausted but not tired, I either take a sleep aid, or work a task list.
6. Nurturing husband - Without my hubs, I wouldn't have clean underwear or a real meal very often at all. I handle a lot of the family business, but hubs is the primary food getter and food maker, and he takes care of the grown people laundry. He doesn't really do these in the way I would, or how he would if I could bend him to my will, but he does them fine and he does them consistently. Most importantly, he is also a mostly calm and logical foil to the swirling chaos that is me. His ability and willingness to play this role in the family is an enormous reason why I am able to function in even the most basic of ways on a daily basis. I try and remember to tell him this as often as I can, though it's never as often as I should.
7. Paid services - Beyond schooling, I pay a variety of service professionals to do things for me and my family that I would otherwise choose to do myself. These include, an amazing and glorious nanny who suppliments me as a mom as needed, like all weekend at the wedding events in San Antonio. We have a lawn service, maid service, poop pick up service, we send at least 50% of our laundry out, I get brazilian blowout hair treatments so that I style in 1/3 the time, we have emergency backup care service for when one or both of the guapos can't go to school, we have critical items like Pediasure and my Steaz energy drinks set up on auto delivery from Amazon Prime. It is not an especially affordable approach, but sometimes, when all else fails, you should just throw money at a problem...check.
8. Local Family & Friends - This one is actually not as big for us as some other families, at least not in terms of direct support. However, they definitely come through in real pinches, like when we're heading to the ER again, and with a little luck and planning I can usually get help in the daily course of things on occasion. I actually wish this one could live higher on the list, but I'm a bit of a narcissist and historically have a hard time accepting that others' lives don't revolve around me.
9. Online resources - I manage all of our finances online, through our bank, Mint, and online arms of our credit card and brokerage accounts. I never ever waste time talking to a human for something I can do online at midnight, and if I need a person, I don't suffer the courtesy of talking to 6 people before getting to a helpful person, I pretty much throw a fit right away. I actively connect with 'support groups' on Facebook and have transitioned a lot of my email contacts into private FB groups so I can gather ideas and distribute info efficiently. I do the vast majority of my shopping online, but with a bit of a twist - I keep a charge card with Macy's and routinely order hundreds of dollars worth of items so that I can try them on at home and cart the majority for return at the store right by my office and frequent lunch spots. I send my husband calendar appointments and outlook tasks. I subscribe to newsletters and promotions from brands, organizations, and hobbies I like and use reviewing the emails as a task itself to determine if there's something that should make it onto another list for follow-up. I am absolutely militant about email - I delete or file virtually everything as soon as I see it, so only things that need my attention are actively visible.
10. Blind confidence - This is more about the spirit in which I do things, having realized that pretty much no one knows what they're doing and everyone's just faking it until they make it. This is the big secret about adulthood that no one tells you. Almost no one genuinely feels like the cool kid or the genius, and those who say they do are probably fibbing, are commonly wrong, and are usually assholes. All I can say for myself is that I almost always have no idea what I'm doing, but I believe that I'm an intelligent and loving individual, and I have a proven track record of making decisions that are at least good enough that I'm here in one piece and mostly happy and liked. Far as I can tell, that's about as good as you can hope, so I try and resolve feelings of ambivalence in favor of action and just keep moving forward. I do the best that I can, which is usually pretty good; when I know better, I try to do better; and when I make mistakes, I try and make things right.
For better or worse, that's how I run things, as best as I can articulate it.
Mercifully, people were gracious and loving and excited and adoring and interested. I did not at a single moment feel accosted or overwhelmed or uncomfortable about the conversation. I did, however, get a substantial number of variations on the theme 'and you work full time too?'
Yes. And here is 'how':
1. Nothing Trumps a Guapo - Nothing. When I am with Moose and Goose, or having one on one time with one of them, that is all that I am doing. I don't watch tv, do dishes or laundry, take phone calls, or otherwise split time that I have with them. As much as I possibly can, I aim to be 100% present for my precious time with my guapos. I roll around on the floor, tickle, squawk and yell, make messes, eat with them, snuggle and nap with them, play creative games with them, do constructive play and totally free play, stare at the grass, whatever. This is the cornerstone of my whole parenting and life approach. There is a whole lot of things that have to happen to keep our family going, but time with guapos is the whole point of the deal, and it's the very best part of my waking hours, so I try not to waste it.
2. Special Needs School - very little in my kids' life would work the way it does without the support of the special school the guapos attend. They get individualized care and therapy circuits in a mainstream environment. This is the PRIME reason I feel like I am justified keeping my career. Frankly, Miss Liz and here entourage probably do it even better than I could anyway, if for no reason other than sheer resources and experience in child development and special needs. This also keeps the guapos on a reliable schedule, and they are well bonded to their teacher and remain together.
3. Flexible work schedule - This is another HUGE one. I'm a consultant, but the client I work for has had me for 5+ years, so the relationship and hours are very flexible. I can attend all of Moose's therapy, doctor's appointments, run errands, catch up with friends and professional colleagues during lunch hours, and so on as long as my deliverables are always prompt and they are made to feel like they are my priority (which they are, but not the #1 one... I am a consultant, we're like lawyers except that people don't see you coming a mile away). Bottom line, when I'm at home with my boys, they are paramount and I am 100% present, pretty much everyone else get's juggled, and my work life has slowly adapted to that.
4. Project Management mindset - I spend a lot of time planning, assessing risks, delegating & monitoring, and coaching people to get the outcomes I think are important. This is a professional skill set that has refined my inherent OCD and bossy aptitudes into a career and a (mostly) high functioning special needs family. Everything is a task, not just obvious things like scheduling an appointment, but thinking about how to keep connected with friends, or finding encouraging things to say to my husband, or time on Facebook. Tasks constantly get re-prioritized. There is no downtime in my world, unless pre-designated in my mental agenda and executed because something more urgent didn't come up (I plan downtime for myself every single day, and my average of actually getting some is about 60%). I now operate a full tilt, gathering and assimilating information, prioritizing, and carrying out. Time in the shower, the car, a line, etc is used to fill or cross off task lists, either literally or mentally.
5. Less sleep - I used to be a sound sleeper, a morning person, and get a good 8 hours virtually every night. I'm currently laughing out loud from having typed that. I laugh a lot now, but more so I don't cry instead. These days, I average about 5 hours of sleep, six is a real treat. When I am exhausted but not tired, I either take a sleep aid, or work a task list.
6. Nurturing husband - Without my hubs, I wouldn't have clean underwear or a real meal very often at all. I handle a lot of the family business, but hubs is the primary food getter and food maker, and he takes care of the grown people laundry. He doesn't really do these in the way I would, or how he would if I could bend him to my will, but he does them fine and he does them consistently. Most importantly, he is also a mostly calm and logical foil to the swirling chaos that is me. His ability and willingness to play this role in the family is an enormous reason why I am able to function in even the most basic of ways on a daily basis. I try and remember to tell him this as often as I can, though it's never as often as I should.
7. Paid services - Beyond schooling, I pay a variety of service professionals to do things for me and my family that I would otherwise choose to do myself. These include, an amazing and glorious nanny who suppliments me as a mom as needed, like all weekend at the wedding events in San Antonio. We have a lawn service, maid service, poop pick up service, we send at least 50% of our laundry out, I get brazilian blowout hair treatments so that I style in 1/3 the time, we have emergency backup care service for when one or both of the guapos can't go to school, we have critical items like Pediasure and my Steaz energy drinks set up on auto delivery from Amazon Prime. It is not an especially affordable approach, but sometimes, when all else fails, you should just throw money at a problem...check.
8. Local Family & Friends - This one is actually not as big for us as some other families, at least not in terms of direct support. However, they definitely come through in real pinches, like when we're heading to the ER again, and with a little luck and planning I can usually get help in the daily course of things on occasion. I actually wish this one could live higher on the list, but I'm a bit of a narcissist and historically have a hard time accepting that others' lives don't revolve around me.
9. Online resources - I manage all of our finances online, through our bank, Mint, and online arms of our credit card and brokerage accounts. I never ever waste time talking to a human for something I can do online at midnight, and if I need a person, I don't suffer the courtesy of talking to 6 people before getting to a helpful person, I pretty much throw a fit right away. I actively connect with 'support groups' on Facebook and have transitioned a lot of my email contacts into private FB groups so I can gather ideas and distribute info efficiently. I do the vast majority of my shopping online, but with a bit of a twist - I keep a charge card with Macy's and routinely order hundreds of dollars worth of items so that I can try them on at home and cart the majority for return at the store right by my office and frequent lunch spots. I send my husband calendar appointments and outlook tasks. I subscribe to newsletters and promotions from brands, organizations, and hobbies I like and use reviewing the emails as a task itself to determine if there's something that should make it onto another list for follow-up. I am absolutely militant about email - I delete or file virtually everything as soon as I see it, so only things that need my attention are actively visible.
10. Blind confidence - This is more about the spirit in which I do things, having realized that pretty much no one knows what they're doing and everyone's just faking it until they make it. This is the big secret about adulthood that no one tells you. Almost no one genuinely feels like the cool kid or the genius, and those who say they do are probably fibbing, are commonly wrong, and are usually assholes. All I can say for myself is that I almost always have no idea what I'm doing, but I believe that I'm an intelligent and loving individual, and I have a proven track record of making decisions that are at least good enough that I'm here in one piece and mostly happy and liked. Far as I can tell, that's about as good as you can hope, so I try and resolve feelings of ambivalence in favor of action and just keep moving forward. I do the best that I can, which is usually pretty good; when I know better, I try to do better; and when I make mistakes, I try and make things right.
For better or worse, that's how I run things, as best as I can articulate it.
Monday, February 20, 2012
Get Thee an ICP Monitor!
Here’s a little story about a cute little Moose. At our 9 month well check, I asked our pediatrician about Moose's head circumference. Actually, what I asked is why they keep measuring it all the time, and noting that he's out of the normal range, but not ever doing or saying anything about it. That conversation lead us to a cranial ultrasound through his fontanel and some MRIs which showed enlargement in both lateral ventricles and also the third ventricle.
I want to emphasize that everyone in the 'fragile x' world told us this was typical for fragile x kids and that it was nothing to worry about. We have a new fancy children's hospital here in Austin and the fancy neurosurgeon didn't seem to have that same impression, but he also wasn't real aggressive about it and didn't clearly encourage us to worry/do something. My mommy instinct said that I shouldn't leave it alone, so I kept pressing everyone (I mean everyone, all kinds of doctors and therapists and researchers) about it.
After a butt load more non-invasive tests that showed absolutely no sign of intracranial pressure, we were pretty stumped. Moose had none of the classic signs of hydrocephalus, the closest thing that was similar to hydrocephalus was that he's developmentally delayed, but obviously this could easily be explained by his Fragile X. Not only that, he's a happy kid and a great sleeper, not common for kids who have neurological issues. I felt like we were on this pendulum, one day we were just dealing with Fragile X and didn't need to do anything about his large head size, and then I’d talk to someone else or read something and we'd swing back to the other side and I'd be gripped with fear about Moose needing brain surgery to get a shunt. You can’t undo a shunt once you go down that path and there are tons of horror stories about shunts. Basically, all my pressing yielded nothing that gave us clear indication that Moose was either fine or not fine.
Finally, I met with the neurosurgeon again and he said that we did have an option for getting a better idea of exactly what was going on inside Moose's head. I decided that I would let the neurosurgeon drill a hole in my baby's skull and put in an intracranial pressure monitor wire (ICP monitor). He had to have anesthesia and be in the hospital and all of that, it was very scary. He actually came through the procedure really well, and he was out of my arms less than an hour and perked right back up when he woke. Within a couple of hours, I was pretty sure things weren't going the way we wanted because the monitors kept beeping all the time with those stupid alarms. The next day, the neurosurgeon came in and said that Moose was definitely having sustained increased pressure as his baseline (his was in the low to mid 20s, they want an infant in the 3-17 range) and with spikes way above what they would want to see (sometimes into the mid 40s). So, then we knew, Moose had to have a shunt, and he got one the next day.
This was a very difficult process for me. It really really sucks when the doctors who are supposed to know what's going on send your kid for a million tests just to tell you they still don't know. I say that as a person who has historically not even really trusted or relied on western medicine all that much! It was even harder to risk that I would put Moose through the surgery for the ICP monitor, risking any number of complications, and find out that it was all for nothing. In retrospect, doing it and finding out that there isn't pressure would have been nice, but either way, KNOWING is better than not knowing.
Also, we learned during the process that some kids have 'low grade' high pressure that doesn't show up in any of the classical tests (just like Moose), but can cause lasting damage. The tricky thing there is that over time the brain compensates for the pressure, so if you test the pressure at age 6 it's normal, but the damage from too much pressure in infancy is already done. (And classically, it's much more common for Fragile X to be diagnosed at school age, so in that way it's not surprising that the FX people felt like enlargement was just typical FX.)
The wonderful news is that if there is pressure at this young age, they can place a shunt and the brain is still so flexible that it can completely heal from any delays or damage caused by the pressure. They basically can cure it completely with a shunt, but only if they do so in this little cognitive development window. In our case, Moose crawled for the first time less than 48 hours after his shunt was placed, at 13 months of age. He obviously still has fragile x, but his development has rocketed forward, it is SO obvious now that he was being held back by pressure in his brain.
Wednesday, February 8, 2012
Oh New Year... Screw You Too.
I remember a time when I was younger and life hadn't quite kicked my ass so well that the hope of a new year was... hopeful. I'm not referring to the specific night of parties, that never meant much to me, being a profound morning person. I'm not even referring to the typical resolutions, though that is sort of in the same vein. I'm thinking of the idea that a new year brings with it a chance for a fresh start, a turning of the page, some sort of natural revitalization or re-imagining of your current circumstances.
Oh, to be that idealistic still. I look back fondly on that version of myself. Nostalgically. Not without some pity. Not without some (a lot of) jealousy.
Last year we got Moose's Fragile X diagnosis. We also had to move out of our less than 5 year old house for two months while our foundation was completely piered down to the bedrock... and repainted the whole house, and repoured the driveway, and replaced all of the flooring, and all of the sewage lines, and you know, fourty thousand dollars worth of restorations on a house we no longer wanted in a district we wouldn't send our children to school in if they paid us to do so. Did I mention that one of our infants was diagnosed with Fragile X? Yeah... it's much easier to bitch about our stupid house than that.
But, 2011 didn't beat us. In fact, I think we kicked 2011's ass as much as it kicked ours. We got Moose set up with Early Childhood Intervention through Easter Seals. I successfully advocated on his behalf to secure him as much services as any child in the state is able to receive. I got two of his therapists replaced with two wonderful and gifted ladies to round out our team. We put the boys in an amazing school. They accept special needs children as well as typically developing kids. They have all manner of customizations and adaptations, and every child gets and individual learning plan. The guapos' teachers are amazing.
We made the grand tour of just about every kind of pediatric specialist Austin has to offer - genetics, development, cardiologist, neurologist, gastroenterologist, ophthalmologist, and neurosurgeon (more on that momentarily). We also hooked up with three Fragile X research teams. We saw Dr. Hagerman et al at the MIND, and Dr. Jane Roberts at U of South Carolina (LOVE). We also went out to St. Louis for a specialized MRI study that has been expanded from autism research to include fragile x infants. I further worked with a naturopathic doctor, a pediatric chiropractor, and three nutritionists to supplement what western medicine is bringing to the table.
I've started blogging. I connected with national Fragile X resources and communities. I established a private Facebook support group for Fragile X moms. I joined the board of the guapos' school and adopted another family in the school anonymously and provide food for them one week a month. I submitted an abstract to make a parent-oriented presentation at the National Fragile X Conference in Miami this summer.
We also hosted Thanksgiving, over a dozen family dinners, I wrote handwritten notes to my aunt, I stayed up late making adorable and ridiculous bento box lunches for Goose, I planned and styled an enormous first birthday bash for the guapos, and a graceful and casual upscale picknick shower for my soon-to-be sister-in-law. I helped my sister launch a new business, took photos for a close friends wedding, made calendars for the grandparents, kept up with Skyping with the guapos' aunt in FL, and had custom holiday gifts made for each of the therapists and teachers, as well as thoughtful gifts for all of our friends and family. I wrote a shitload of thankyou notes. ...are you getting the sense that I could go on? Yes, that would be correct.
I'm not saying this because I'm looking for some kind of medal. I am not some sort of superwoman - FAR from it. I actually had the audacity (and complete inexcusable rudeness) to say to a well meaning lady at a friendly ladies cocktail party, who casually asked in what I think was an intent to be complimentary fashion, how I manage it all with the comment 'well, in all honesty, I'm lightly medicated and I don't sleep very much'. I am such an asshole sometimes. Poor lady. [I'm both regretful that I reacted as I did and said that, and at the same time acknowledge that this reaction springs from a part of me that rebels against the notion that special needs moms are somehow magical and the generally unpalatable inclination for women to both revere and demonize each other as mothers.]
So if not going for the gold in the poor me olympics, what's my point? My point is that January 2012 blew. Moose had a brain surgery to place an intracranial pressure monitor wire IN HIS BRAIN to try and give us some clarity about whether his enlarged ventricles were just a typical Fragile X brain or if there was actual pressure in his brain. See, his head size has always been large, but it jumped out of range at the 9 month well check. Then an ultrasound through his fontanel showed enlarged ventricles. This lead to an MRI and a CT scan - yes, enlarged ventricles. Then they wanted to do surgery to place a shunt to drain off excesses of cerebrospinal fluid, but no one could agree that there actually was an excess of CSF. The Fragile X community seemed to agree that FXS kids have big ventricles and this was nothing to be alarmed about. The pediatrician and neurologist said don't get a shunt, they are awful and they fail constantly, unless you really need one and then it's a life saver. Awesome. Then we went to St. Louis for the full fledged MRI scans through their study and sure enough, very enlarged ventricles, and 1/2 as much white matter as a typically developing 12 month old, less even than a typical FX kid. More awesome.
So, we placed the ICP monitor wire on Jan 3. And Wednesday morning they had plenty of info to know that there was too much pressure. So on Jan 5th, Moose got a shunt. He got two more burr holes in his skull and a shunt, that will definitely malfunction and fail multiple times over the course of his life and require additional brain surgeries to replace. So awesome.
And then I got pneumonia. Oh yeah, did you know that if you are crazy, and over stressed, and never sleep, and don't eat anymore, and don't take care of yourself because you are too busy having twins and working full time and doing community work and entertaining family and having a special needs child and seeing 4+ doctors or therapists per week for your child and generally trying to take over the world because you're crazy you can give yourself pneumonia? Well, you can.
See, as it turns out, I am still buying into the notion that if I somehow do 'it' right, then things will work out. How many times do I have to learn this lesson? How many times do I have to get the bitch slap for the universe to finally accept that there is no cosmic bank of good fortune in which I am depositing future luck with my current deeds? I mean, if you could manifest something via an act of sheer will, trust me I would have done it by now. Or my mother would have. For real, I can put my Irish on and suffer with dignity through basically anything at this point. That's not a challenge, Universe, that's just truth.
But why?
What true merit is there in the whole suffering with grace and quiet strength thing? I mean, first of all, that's just a facade. I am a total and uninhibited mess swirling just below the surface of this polished and diplomatic presentation. Anyone who is close to me who I've opened up to even a little about what's really going on could tell you that much. Secondly, who is really buying it, and more importantly, why do they matter? My sister has an amazing ability to keep haters out of her head; she literally told a stupid coworker who mocked a picture of her child and later apologized that it was no big deal because they didn't matter. Honestly, she stone cold looked this person in the face and said "I don't care what you think because you don't matter." And she meant it. She didn't say it to be mean, or get retribution for the shitty comment, or to malign the person, she just stated her truth. I wish I had that ability, if not to actually say it, to at least feel that way. I imagine her internal dialogue to be so liberated and uninhibited.
So, add to my list of goals for this year the move towards a more honest and vulnerable representation of my true inner self. I guess a sub-goal will have to be finding my way into a community of people who are ready to accept or at least tolerate this version of me.
Oh, to be that idealistic still. I look back fondly on that version of myself. Nostalgically. Not without some pity. Not without some (a lot of) jealousy.
Last year we got Moose's Fragile X diagnosis. We also had to move out of our less than 5 year old house for two months while our foundation was completely piered down to the bedrock... and repainted the whole house, and repoured the driveway, and replaced all of the flooring, and all of the sewage lines, and you know, fourty thousand dollars worth of restorations on a house we no longer wanted in a district we wouldn't send our children to school in if they paid us to do so. Did I mention that one of our infants was diagnosed with Fragile X? Yeah... it's much easier to bitch about our stupid house than that.
But, 2011 didn't beat us. In fact, I think we kicked 2011's ass as much as it kicked ours. We got Moose set up with Early Childhood Intervention through Easter Seals. I successfully advocated on his behalf to secure him as much services as any child in the state is able to receive. I got two of his therapists replaced with two wonderful and gifted ladies to round out our team. We put the boys in an amazing school. They accept special needs children as well as typically developing kids. They have all manner of customizations and adaptations, and every child gets and individual learning plan. The guapos' teachers are amazing.
We made the grand tour of just about every kind of pediatric specialist Austin has to offer - genetics, development, cardiologist, neurologist, gastroenterologist, ophthalmologist, and neurosurgeon (more on that momentarily). We also hooked up with three Fragile X research teams. We saw Dr. Hagerman et al at the MIND, and Dr. Jane Roberts at U of South Carolina (LOVE). We also went out to St. Louis for a specialized MRI study that has been expanded from autism research to include fragile x infants. I further worked with a naturopathic doctor, a pediatric chiropractor, and three nutritionists to supplement what western medicine is bringing to the table.
I've started blogging. I connected with national Fragile X resources and communities. I established a private Facebook support group for Fragile X moms. I joined the board of the guapos' school and adopted another family in the school anonymously and provide food for them one week a month. I submitted an abstract to make a parent-oriented presentation at the National Fragile X Conference in Miami this summer.
We also hosted Thanksgiving, over a dozen family dinners, I wrote handwritten notes to my aunt, I stayed up late making adorable and ridiculous bento box lunches for Goose, I planned and styled an enormous first birthday bash for the guapos, and a graceful and casual upscale picknick shower for my soon-to-be sister-in-law. I helped my sister launch a new business, took photos for a close friends wedding, made calendars for the grandparents, kept up with Skyping with the guapos' aunt in FL, and had custom holiday gifts made for each of the therapists and teachers, as well as thoughtful gifts for all of our friends and family. I wrote a shitload of thankyou notes. ...are you getting the sense that I could go on? Yes, that would be correct.
I'm not saying this because I'm looking for some kind of medal. I am not some sort of superwoman - FAR from it. I actually had the audacity (and complete inexcusable rudeness) to say to a well meaning lady at a friendly ladies cocktail party, who casually asked in what I think was an intent to be complimentary fashion, how I manage it all with the comment 'well, in all honesty, I'm lightly medicated and I don't sleep very much'. I am such an asshole sometimes. Poor lady. [I'm both regretful that I reacted as I did and said that, and at the same time acknowledge that this reaction springs from a part of me that rebels against the notion that special needs moms are somehow magical and the generally unpalatable inclination for women to both revere and demonize each other as mothers.]
So if not going for the gold in the poor me olympics, what's my point? My point is that January 2012 blew. Moose had a brain surgery to place an intracranial pressure monitor wire IN HIS BRAIN to try and give us some clarity about whether his enlarged ventricles were just a typical Fragile X brain or if there was actual pressure in his brain. See, his head size has always been large, but it jumped out of range at the 9 month well check. Then an ultrasound through his fontanel showed enlarged ventricles. This lead to an MRI and a CT scan - yes, enlarged ventricles. Then they wanted to do surgery to place a shunt to drain off excesses of cerebrospinal fluid, but no one could agree that there actually was an excess of CSF. The Fragile X community seemed to agree that FXS kids have big ventricles and this was nothing to be alarmed about. The pediatrician and neurologist said don't get a shunt, they are awful and they fail constantly, unless you really need one and then it's a life saver. Awesome. Then we went to St. Louis for the full fledged MRI scans through their study and sure enough, very enlarged ventricles, and 1/2 as much white matter as a typically developing 12 month old, less even than a typical FX kid. More awesome.
So, we placed the ICP monitor wire on Jan 3. And Wednesday morning they had plenty of info to know that there was too much pressure. So on Jan 5th, Moose got a shunt. He got two more burr holes in his skull and a shunt, that will definitely malfunction and fail multiple times over the course of his life and require additional brain surgeries to replace. So awesome.
And then I got pneumonia. Oh yeah, did you know that if you are crazy, and over stressed, and never sleep, and don't eat anymore, and don't take care of yourself because you are too busy having twins and working full time and doing community work and entertaining family and having a special needs child and seeing 4+ doctors or therapists per week for your child and generally trying to take over the world because you're crazy you can give yourself pneumonia? Well, you can.
See, as it turns out, I am still buying into the notion that if I somehow do 'it' right, then things will work out. How many times do I have to learn this lesson? How many times do I have to get the bitch slap for the universe to finally accept that there is no cosmic bank of good fortune in which I am depositing future luck with my current deeds? I mean, if you could manifest something via an act of sheer will, trust me I would have done it by now. Or my mother would have. For real, I can put my Irish on and suffer with dignity through basically anything at this point. That's not a challenge, Universe, that's just truth.
But why?
What true merit is there in the whole suffering with grace and quiet strength thing? I mean, first of all, that's just a facade. I am a total and uninhibited mess swirling just below the surface of this polished and diplomatic presentation. Anyone who is close to me who I've opened up to even a little about what's really going on could tell you that much. Secondly, who is really buying it, and more importantly, why do they matter? My sister has an amazing ability to keep haters out of her head; she literally told a stupid coworker who mocked a picture of her child and later apologized that it was no big deal because they didn't matter. Honestly, she stone cold looked this person in the face and said "I don't care what you think because you don't matter." And she meant it. She didn't say it to be mean, or get retribution for the shitty comment, or to malign the person, she just stated her truth. I wish I had that ability, if not to actually say it, to at least feel that way. I imagine her internal dialogue to be so liberated and uninhibited.
So, add to my list of goals for this year the move towards a more honest and vulnerable representation of my true inner self. I guess a sub-goal will have to be finding my way into a community of people who are ready to accept or at least tolerate this version of me.
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