WARNING: Those of you under the insane impression that I'm some sort of perfect mother should stop reading now. Actually, you should have stopped reading before you began, but that's beside the point :D
This morning, before nine AM, I had yelled at all three boys. I yelled at Artist for being his usual trying self. I yelled at Superhero for spilling a bowl of cereal literally WHILE I was telling him to be careful with it. And I yelled at Fighter for eating a box of cereal. The actual box.
It was the last one that got me. My little Fighter looked at me with shock and betrayal in his beautiful green eyes, and I nearly broke down. Would have, actually, had I not had the presence of mind to know that seeing me cry would have had HIM out of sorts for the rest of the day.
So this afternoon, less than 24 hours after I finally took one of my dear friends up on her repeated offers for babysitting, I stayed home while my husband took the boys to therapy. While they were gone, I made a half dozen phone calls related to the move and the logistics of the boys' treatment. I also made some headway on one of our many random storage spaces (my designation for spaces in the house, including two unused bedrooms, a corner of the dining room, an alcove, and a hall closet, where clutter has accumulated over the past three years), packing up bags and bags of items for charity. I read a few chapters of a novel that I've been wanting to read, and I did some online shopping for lighting fixtures. But mostly, I sat here chastising myself for yelling at the boys this morning.
It's truly not that I think I'm Supermom. In fact, I joke every year that I lose my 'Mom of the Year' award sometime before noon on New Year's Day. But I SHOULD be Supermom. After all, I'm raising superheroes--do they deserve any less than a mom as awesome as they are? No, they don't. They deserve a mom who can handle all they can dish out, who can not only respond to but anticipate their needs, who can be sassed, clean up messes, and explain "Why?" for the five hundred millionth time in a day with a calm voice, a gentle hand, and a smile on her face. That is what they DESERVE.
But what they HAVE is me. A woman who most days can't even figure out when she stopped being a 'girl'. A woman so overwhelmed that even her to-do list makes her want to cry. A screamer whose preferred method of expressing herself is loudly and emphatically. And a person so completely ill-equipped to raise these wonderful little boys that some days she yells at all three of them before breakfast is done.
Luckily, what they also have is a mother who loves them fiercely. FIERCELY, like a lion protecting her cubs. A mother who will go without sleep to make sure they're safe, who will go without food until she's sure they're fed, who will go without anything and everything until their needs are met. A mother who consistently puts her needs after their needs, and often puts her needs after their desires. A mother who recognizes that she doesn't have what it takes to fulfill their needs, and who searches far and wide for people who can help. A mother who plays silly games until her head aches, who makes peanut butter sandwiches until the very smell of peanut butter makes her gag, and who sings lullabies until she's hoarse.
What the X Men are cursed with is a woman who yells at them before breakfast is done.
What they are blessed with is a mother who will move heaven and earth for them.
I pray that, decades from now, they believe the one was a fair trade for the other.
Changes
It's been a busy few months. My husband and I have had several discussions over the past few months about the world we live in and how difficult that world is for our sons. While our ultimate goal is to help our boys learn how to navigate the world as it is, we want to provide them a safe place to learn to do so. We decided that our best bet is to buy a home that we can modify as needed. And so, we did--barring any unforeseen discoveries by the home inspector, we'll close in the next few weeks.
Which is good, since our lease is up August 15 :D.
We decided we did not want to risk a large debt, since we can not be certain from year to year what treatments our children will need or how much of those treatments will be covered by insurance, so we spent most of our savings on a foreclosure. The rest of our savings will be spent on moving expenses and doing what repairs and modifications we can afford. At this point, I'm just hoping we can cover the major repairs and the necessary modifications, included the excavation and fencing of the back yard--a necessity for our boys, especially Fighter, who is a runner ('eloper' is another common descriptor--generally just means that he runs off with no consideration for safety).
So, in the next four weeks, we will close on our house, embark on some major repairs and improvements, do a lot of minor home improvements, pack up this 2000+ square foot rental, and move. In addition, the boys will start school (Superhero will be at a new school for 1st grade, while Artist and Fighter will return to the preschool they attended last year, as our new home is actually closer to their school than our current home). The boys will continue therapy in the meantime, and the adults of the house will be finishing up college courses we enrolled in this summer (clearly didn't think that one through, right?).
So I probably won't be posting a lot. Sorry about that, but I hope to catch up with detailed reports on the modifications we did to our new home to make the boys' lives (and ours) easier in early September.
Which is good, since our lease is up August 15 :D.
We decided we did not want to risk a large debt, since we can not be certain from year to year what treatments our children will need or how much of those treatments will be covered by insurance, so we spent most of our savings on a foreclosure. The rest of our savings will be spent on moving expenses and doing what repairs and modifications we can afford. At this point, I'm just hoping we can cover the major repairs and the necessary modifications, included the excavation and fencing of the back yard--a necessity for our boys, especially Fighter, who is a runner ('eloper' is another common descriptor--generally just means that he runs off with no consideration for safety).
So, in the next four weeks, we will close on our house, embark on some major repairs and improvements, do a lot of minor home improvements, pack up this 2000+ square foot rental, and move. In addition, the boys will start school (Superhero will be at a new school for 1st grade, while Artist and Fighter will return to the preschool they attended last year, as our new home is actually closer to their school than our current home). The boys will continue therapy in the meantime, and the adults of the house will be finishing up college courses we enrolled in this summer (clearly didn't think that one through, right?).
So I probably won't be posting a lot. Sorry about that, but I hope to catch up with detailed reports on the modifications we did to our new home to make the boys' lives (and ours) easier in early September.
Sweet Dreams
The favorite lullaby in our house lately is called "I see the moon"--a lullaby I fell in love with in Divine Secrets of the YaYa Sisterhood (sadly, can't remember if it was the books or the movie). I only knew the first verse for the longest time, but I recently learned the next three. My Artist starts screaming "NO NO" every time I start singing it during the day--for him, it signifies bed time :D
For those who don't know it, here are the lyrics:
I see the moon and the moon sees me
And the moon sees the one that I want to see
God bless the moon, and God bless me
And God bless the one that I want to see
It seems to me that God above
Created you for me to love
He picked you out from all the rest
Because he knew I'd love you the best
I once had a heart as good as new
But now it's gone from me to you
Take care of it as I have done
For you have two and I have none
If I get to heaven and you're not there
I'll carve your name on a golden stair
A-way up high for all to see
Just how much you mean to me.
My favorite verse, I think, is the second. "It seems to me that God above created you for me to love . .. " My little ones are so amazingly unique that I am quite certain they are each one of a kind, and they are mine, given to me to love for the rest of my life. I am so tired lately, stressed, and scared. Terrified, really, that I do not have what it takes to give these boys what they need. And on some level, I'm still frightened that someone will figure out that I simply don't deserve these amazing little humans, and take them away from me.
I'm kind of tired of hearing people say "I just don't know how you do it." Do what? Love these boys? Take a minute and get to know them, and I promise they'll steal your heart, too. And when you are this completely, totally in love, what choice do you have but to mortgage your soul for a smile? Love, I am coming to realize, does not make the mountains go away--sometimes, it even makes them higher. It doesn't make you confident you can climb it--in fact, you'll be even more terrified that you won't make it to the top, because love makes the consequences of failure seem much more dire. No, love doesn't make anything easier. But amongst the things that get harder when you love is giving up. I may never make it to the top of the mountain, but I will continue to climb, to fight for these boys, until there is no longer breath in my body. Climbing the mountain seems impossible, but giving up IS impossible.
Sweet dreams everyone.
For those who don't know it, here are the lyrics:
I see the moon and the moon sees me
And the moon sees the one that I want to see
God bless the moon, and God bless me
And God bless the one that I want to see
It seems to me that God above
Created you for me to love
He picked you out from all the rest
Because he knew I'd love you the best
I once had a heart as good as new
But now it's gone from me to you
Take care of it as I have done
For you have two and I have none
If I get to heaven and you're not there
I'll carve your name on a golden stair
A-way up high for all to see
Just how much you mean to me.
My favorite verse, I think, is the second. "It seems to me that God above created you for me to love . .. " My little ones are so amazingly unique that I am quite certain they are each one of a kind, and they are mine, given to me to love for the rest of my life. I am so tired lately, stressed, and scared. Terrified, really, that I do not have what it takes to give these boys what they need. And on some level, I'm still frightened that someone will figure out that I simply don't deserve these amazing little humans, and take them away from me.
I'm kind of tired of hearing people say "I just don't know how you do it." Do what? Love these boys? Take a minute and get to know them, and I promise they'll steal your heart, too. And when you are this completely, totally in love, what choice do you have but to mortgage your soul for a smile? Love, I am coming to realize, does not make the mountains go away--sometimes, it even makes them higher. It doesn't make you confident you can climb it--in fact, you'll be even more terrified that you won't make it to the top, because love makes the consequences of failure seem much more dire. No, love doesn't make anything easier. But amongst the things that get harder when you love is giving up. I may never make it to the top of the mountain, but I will continue to climb, to fight for these boys, until there is no longer breath in my body. Climbing the mountain seems impossible, but giving up IS impossible.
Sweet dreams everyone.
Artist
(Some of this is identical to Fighter’s story. That’s because they’re twins, and some of the information overlaps. I’m lazy and didn’t see the point in trying to rephrase the parts that were identical :P)
The day I found out I was pregnant with twins, I sobbed hysterically. I was SO nauseous, the vertigo was making it impossible to function, and I couldn't imagine dealing with more. And I knew twins meant more, along with a host of other worries.
I was SO right. A few weeks later, though, I started getting excited about it. I had always imagined having twin girls, just like the Sweet Valley High sisters. They would be beautiful and close and wonderful people, and their big brother would be proud and protective.
And then we discovered our twins were boys. Luckily, this was two days after I had decided that I wasn't sure I wanted girls, that my boy was perfect and two more boys would be that much more perfection. Everyone assumed I was disappointed--I had made no secret of wanting a girl. But I was secretly glad. In my mind, girls are harder to raise than boys, and I couldn't imagine having another me in the house. :D
Artist was Baby B. Our OB is a big believer in ultrasounds, and I was high risk before we found out there were two babies in there, so we were able to chronicle our pregnancy with frequent ultrasounds. Artist was smaller than Fighter in the beginning, significantly so around months 3 and 4, and then slowly, Artist began to catch up. And then surpass Fighter. I was concerned, but no one else was--after all, they were still both healthy sizes, with strong heartbeats. Fetal movements began to decrease alarmingly near the end, but then, of course they did--there was no more room! They were also amazingly strong already, cracking my ribs repeatedly during the last couple of months.
At 36 weeks, 6 days gestation, the physician's assistant handling my twice-a-week checkups said my blood pressure was too high. It had been slowly climbing throughout the pregnancy, and my kidneys were also having issues. Fetal movements were down, also, but no more so than they had been for two weeks. Nevertheless, she wanted me to go to the hospital--the larger hospital with the prenatal unit, not the smaller hospital where I wanted to deliver. The smaller hospital would not allow me there until I was 37 weeks. So I politely said no, I'll see you in two days, and left. She then tracked down my OB, who was not on call but was the head of obstetrics at my preferred hospital, and got his permission for me to go there. And then she called MY MOTHER, who happened to live near her, and told her to make me go to the hospital. I had just picked up my oldest and we had taken him out for a family dinner that we suspected would be the last before his brothers arrived, and my parents tracked us down at the video store, preparing for a family movie night. This is the sort of thing that happens when you live in a small town :P
I asked my OB to put off delivery. I wanted the boys' lungs to develop. And I told him in no uncertain terms that I wasn't prepared for a stay in the NICU--the pregnancy itself had sapped every bit of inner strength I had, and I simply had no more left. And then I joked "Besides, you promised me September babies, with pretty sapphires for my mother's jewelry. August is peridots. Peridots are simply not as pretty as sapphires." My OB saw right through my frivolous reasoning to the heart of the matter--part of the reason I trust my life and that of my children to him--and agreed to wait. Until September 1, four days away. But only if I would agree to an amniocentesis, a c-section instead of risking my blood pressure would go even higher during delivery, and only if I would stay there, in the hospital, in bed, until then. I agreed.
September 1 was a Saturday, and I was more than a little surprised not only that my OB had agreed to that delay but also that he had managed to assemble the team he had on a Saturday morning--my OB was there, as was my pediatrician, an anesthesiologist, and an additional doctor (I suspect a cardiologist, since they were concerned about my blood pressure). There was an RN to assist each doctor, and an additional RN for each of the twins. And there were two LPNs. That's right--a medical staff of 12 for what I assumed was a routine delivery. There was barely room for my husband in the operating room!
Things started off rocky--I crashed on the table after the spinal block was inserted. My blood pressure just bottomed out, much as it had during the beginning of the pregnancy. The anesthesiologist, who has one of the most calming voices I have ever heard, got the situation under control in about ten minutes, but it was pretty frightening there for a bit. In addition, there's only a short amount of time for a conscious c-section delivery (approximately 30 minutes) and if you go beyond that, then you need to put mom to sleep, which increases the risk of complication for everyone. So we were on a pretty tight time table. In addition, my OB wrongfully assumed that my little ones would be, well, little--twin sized, not normal baby sized :P He made the incisions smaller than he would have otherwise, and had some difficulties maneuvering the babies out, and because of the shortened time table didn't have time to make it larger.
Artist took a deep breath and then cried the most beautiful sound after delivery, and then peed all over the doctor--an action his twin had performed just two minutes earlier. He joked about it, but only for a second—I didn’t understand the frantic feel to the air, but I did see that the OB was examining the placenta very closely, even holding it up to the light, before he began stitching. He later explained that he was trying to establish if the placenta was a single placenta or two placentas that had fused, to help them determine if the boys had suffered from twin to twin transfusion (he could not make the call, but they clearly had twin to twin). Twin to twin transfusion is very, very rare in fraternal twins, but ours did suffer from it. Fighter was whisked out of the room and into an oxygen tent and given an IV, while my 6 pound 13 ounce Artist was given to his mama, who was begging to hold him. This was a new experience for me—my oldest was born by emergency c-section after days of labor, and while the nurses propped him into my arms with an artful placement of pillows and blankets to make a pretty picture for the grandparents as we were wheeled down the hall, I actually had little interest in anything other than sleep by that point. But with the twins, I was wide awake, and I wanted to hold my babies. So much so that not long after returning to my room, I was drugged into incoherence—and even then, I wouldn’t let them take Artist out of the room for longer than a few minutes at a time.
Artist nursed right away, and by all appearances was a healthy little boy. Our pediatrician seemed to hover over him, though, seemingly expecting some unseen catastrophe—it was only later that he explained that the recipient twin from twin to twin transfusion usually suffers more long term effects than the donor. Artist did not seem to have any of the ‘minor’ birth defects his brother had—he was not tongue tied, and most importantly did not have a discernible heart murmur. We reserved our worry those first few hours for Fighter, and just enjoyed our Artist.
When Fighter was 12 hours old, they removed the oxygen for good, and I felt like I had my babies. We put them into the same bassinet--they shared a womb, it just felt cruel to put them across the room from each other. They nursed and snuggled, loved to be held and swaddled. They were both thumb suckers--opposite thumbs--and looked so cute lying side by side, sucking their thumbs. As they grew, they occasionally sucked each others thumb, or foot, or whatever they could grab, which we saw as incredibly sweet and endearing.
Their growth was slow, and they spit up a LOT, but at first we thought it was just overeating, and then 'forceful let down' (a breastfeeding phenomenon which some 'lucky' moms have, in which the milk practically sprays into baby's mouth). Just before they were three months old, when they were still wearing preemie sized clothing and had not yet doubled their birth weight (which for Artist was 6 pounds 13 ounces), their pediatrician diagnosed acid reflux, and we medicated them for it. It didn't help. By Christmas, I was pumping milk and mixing it with cereal--that didn't work, either. New Year's Day was spent in the hospital with Artist--the babies had a virus, and Artist was dehydrated. We spent the next two months accepting that they could not process my breast milk and finding a formula that worked (Similac Sensitive AR, only available in ready to feed, with a secret ingredient of gold, apparently, based on the price), and then they finally started to grow. We all breathed a sigh of relief, and settled in to enjoy our babies.
That relaxation only lasted a few weeks. Artist always, always had an odd affect to him—there was just something otherworldly about him. It was like he had come from some other place, and intended to return there soon. It terrified me. So when he turned blue at around six months, I panicked. A LOT. We took him to his pediatrician, and his oxygen levels were fine. We took him to a cardiologist, a kidney specialist, even a specialist who dealt with childhood arthritis, and no one could tell us what was wrong. We still don’t know what was causing the problems, but theorize that it was a circulation issue caused by damage done by the twin to twin transfusion. He has lost the disconnected affect, and as he has gotten older the ‘attacks’ have decreased in frequency and severity. But occasionally, he still turns blue. Usually his lips, hands, and feet, but sometimes his limbs are blueish and mottled as well. Sometimes, his lips ‘harlequin’, so that half his lips are normal and the other half is blue. It’s still a frightening thing to see.
At their one year check up, I was told that they were a little behind, but that was to be expected both with twins and with their struggles the first few months. At their 18 month checkup, I brought up autism for the first time, mostly in reference to Fighter. My pediatrician (who would retire to academia soon after) told me that he himself had an autistic son, and that while we were free to have our son screened, in his opinion our son was not autistic. We breathed a sigh of relief, but unconsciously, I was still concerned. There was just something different about our boys. On the other hand, there was something different about ALL of our boys, so we tried to just tell ourselves it was just who they were.
At their two year check up, our pediatrician had changed, and the experience was insane. The kids were absolutely wild, and my attempts to talk with the pediatrician were in the middle of chaos. Still though, he said it looked like the boys were a little behind in speech, but we would review it again later, and it was probably nothing to worry about.
By the time everyone agreed the boys may have a delay, they were 2.5 years old. In West Virginia, there is a wonderful service for children called the birth to three program, designed to help young children and their families get 'caught up' before the school years start. By the time we all agreed there was a problem, however, my boys were really too old for the program. So I waited until the school year started and scheduled them for a speech evaluation, fully expecting to spend the year taking them to speech therapy. After just a few minutes with the boys, the therapist said "These boys need SO much more than just speech!" and in a whirlwind, we were enrolled in preschool, almost two years earlier than we had planned for them to be. A few months into preschool, the teacher gently suggested we consider an OT evaluation, and so we found a therapy center and the boys began speech an occupational therapy, and Fighter started physical therapy to address a weak core and poor body awareness. We took them to a family therapist as well, and still the closest thing to a diagnosis we got was 'developmentally delayed'.
We are not ignorant people. We read, we research, we ask questions. So we knew the direction we were heading, and were actually just surprised that no one was willing to give us a diagnosis. Finally, I contacted a local agency for case management services (I found myself completely overwhelmed, as well as with mounting debt), and they told me that before they could help, I needed an official diagnosis. We have a developmental evaluation scheduled, but that's still a while away. My Father in Law called in a favor and got someone he trusted (a psychologist with years of experience in both private practice and the education system) to do an evaluation. He gave up a Saturday and evaluated our three boys. He gave us his preliminary findings that day. We talked about Superhero a lot—his behaviors were really affecting his performance at school, and as he wasn’t currently receiving outside services, this was the only input we were getting for him. Then we talked about Fighter, who we strongly suspected was autistic, a suspicion confirmed by the psychologist.
He told us Artist had sat for half an hour and took an IQ test—longer than any other three year old he had worked with. And then I said ‘so what do you think is going on with him?’, and with the nonchalance one expresses when requesting sweet tea with dinner, he told us he thought Artist had brain damage.
It was like he had dropped a grenade at our feet, and all we could do was stare at it until it exploded.
We were shocked, but in hindsight, we shouldn’t have been. We know what he saw that gave him that suspicion—droopy eyelids, an odd slur to his voice, difficulty searching for the appropriate words when trying to communicate.
We have more to do. There will still be a complete developmental evaluation for Fighter and Artist, and possibly for Superhero later on, as well. Artist will need an MRI and/or CT scan to confirm the psychologist’s suspicions. Then there will be data analysis and treatment plans and work work work! We will get expert opinions, where we will all but beg for guarantees from people who would love to give them to us, but simply can’t. There will be smiles and tears and screams of frustration. And it will be a long, long journey.
But for now, we are enjoying our Artist. He began drawing and painting before he was walking, and it is still his favorite thing to do. His current favorite is drawing people—circles with eyes and hair and a nose and a mouth, sometimes ears, and occasionally legs and arms. He is currently in a tyrant phase, ordering everyone about and falling into complete meltdown whenever he is told no. And when he laughs, I am sure the angels stop to listen.
Artist is like a force of nature, and it remains to be seen which direction his winds will blow. The only thing I know for sure is that I will do my best to go with him, to let him direct us to a future that fulfills him, delights him, and brings him joy.
UPDATE: The official report from the psychologist listed autism as a diagnosis, with only a brief reference to 'neurophysical symptoms'. After discussing it with him, I think the psychologist stands by his original assessment, but generally wishes he hadn't given it to me :P He is concerned, I think, that both Artist's parents and his professional staff will treat him differently if they think he has physical damage to his brain, and seems to believe that he will show substantial improvement with his current treatment regimen. We will be discussing this with the treatment team scheduled to evaluate the boys at a children's hospital soon, and will probably bring up the matter and request MRI's then.
The day I found out I was pregnant with twins, I sobbed hysterically. I was SO nauseous, the vertigo was making it impossible to function, and I couldn't imagine dealing with more. And I knew twins meant more, along with a host of other worries.
I was SO right. A few weeks later, though, I started getting excited about it. I had always imagined having twin girls, just like the Sweet Valley High sisters. They would be beautiful and close and wonderful people, and their big brother would be proud and protective.
And then we discovered our twins were boys. Luckily, this was two days after I had decided that I wasn't sure I wanted girls, that my boy was perfect and two more boys would be that much more perfection. Everyone assumed I was disappointed--I had made no secret of wanting a girl. But I was secretly glad. In my mind, girls are harder to raise than boys, and I couldn't imagine having another me in the house. :D
Artist was Baby B. Our OB is a big believer in ultrasounds, and I was high risk before we found out there were two babies in there, so we were able to chronicle our pregnancy with frequent ultrasounds. Artist was smaller than Fighter in the beginning, significantly so around months 3 and 4, and then slowly, Artist began to catch up. And then surpass Fighter. I was concerned, but no one else was--after all, they were still both healthy sizes, with strong heartbeats. Fetal movements began to decrease alarmingly near the end, but then, of course they did--there was no more room! They were also amazingly strong already, cracking my ribs repeatedly during the last couple of months.
At 36 weeks, 6 days gestation, the physician's assistant handling my twice-a-week checkups said my blood pressure was too high. It had been slowly climbing throughout the pregnancy, and my kidneys were also having issues. Fetal movements were down, also, but no more so than they had been for two weeks. Nevertheless, she wanted me to go to the hospital--the larger hospital with the prenatal unit, not the smaller hospital where I wanted to deliver. The smaller hospital would not allow me there until I was 37 weeks. So I politely said no, I'll see you in two days, and left. She then tracked down my OB, who was not on call but was the head of obstetrics at my preferred hospital, and got his permission for me to go there. And then she called MY MOTHER, who happened to live near her, and told her to make me go to the hospital. I had just picked up my oldest and we had taken him out for a family dinner that we suspected would be the last before his brothers arrived, and my parents tracked us down at the video store, preparing for a family movie night. This is the sort of thing that happens when you live in a small town :P
I asked my OB to put off delivery. I wanted the boys' lungs to develop. And I told him in no uncertain terms that I wasn't prepared for a stay in the NICU--the pregnancy itself had sapped every bit of inner strength I had, and I simply had no more left. And then I joked "Besides, you promised me September babies, with pretty sapphires for my mother's jewelry. August is peridots. Peridots are simply not as pretty as sapphires." My OB saw right through my frivolous reasoning to the heart of the matter--part of the reason I trust my life and that of my children to him--and agreed to wait. Until September 1, four days away. But only if I would agree to an amniocentesis, a c-section instead of risking my blood pressure would go even higher during delivery, and only if I would stay there, in the hospital, in bed, until then. I agreed.
September 1 was a Saturday, and I was more than a little surprised not only that my OB had agreed to that delay but also that he had managed to assemble the team he had on a Saturday morning--my OB was there, as was my pediatrician, an anesthesiologist, and an additional doctor (I suspect a cardiologist, since they were concerned about my blood pressure). There was an RN to assist each doctor, and an additional RN for each of the twins. And there were two LPNs. That's right--a medical staff of 12 for what I assumed was a routine delivery. There was barely room for my husband in the operating room!
Things started off rocky--I crashed on the table after the spinal block was inserted. My blood pressure just bottomed out, much as it had during the beginning of the pregnancy. The anesthesiologist, who has one of the most calming voices I have ever heard, got the situation under control in about ten minutes, but it was pretty frightening there for a bit. In addition, there's only a short amount of time for a conscious c-section delivery (approximately 30 minutes) and if you go beyond that, then you need to put mom to sleep, which increases the risk of complication for everyone. So we were on a pretty tight time table. In addition, my OB wrongfully assumed that my little ones would be, well, little--twin sized, not normal baby sized :P He made the incisions smaller than he would have otherwise, and had some difficulties maneuvering the babies out, and because of the shortened time table didn't have time to make it larger.
Artist took a deep breath and then cried the most beautiful sound after delivery, and then peed all over the doctor--an action his twin had performed just two minutes earlier. He joked about it, but only for a second—I didn’t understand the frantic feel to the air, but I did see that the OB was examining the placenta very closely, even holding it up to the light, before he began stitching. He later explained that he was trying to establish if the placenta was a single placenta or two placentas that had fused, to help them determine if the boys had suffered from twin to twin transfusion (he could not make the call, but they clearly had twin to twin). Twin to twin transfusion is very, very rare in fraternal twins, but ours did suffer from it. Fighter was whisked out of the room and into an oxygen tent and given an IV, while my 6 pound 13 ounce Artist was given to his mama, who was begging to hold him. This was a new experience for me—my oldest was born by emergency c-section after days of labor, and while the nurses propped him into my arms with an artful placement of pillows and blankets to make a pretty picture for the grandparents as we were wheeled down the hall, I actually had little interest in anything other than sleep by that point. But with the twins, I was wide awake, and I wanted to hold my babies. So much so that not long after returning to my room, I was drugged into incoherence—and even then, I wouldn’t let them take Artist out of the room for longer than a few minutes at a time.
Artist nursed right away, and by all appearances was a healthy little boy. Our pediatrician seemed to hover over him, though, seemingly expecting some unseen catastrophe—it was only later that he explained that the recipient twin from twin to twin transfusion usually suffers more long term effects than the donor. Artist did not seem to have any of the ‘minor’ birth defects his brother had—he was not tongue tied, and most importantly did not have a discernible heart murmur. We reserved our worry those first few hours for Fighter, and just enjoyed our Artist.
When Fighter was 12 hours old, they removed the oxygen for good, and I felt like I had my babies. We put them into the same bassinet--they shared a womb, it just felt cruel to put them across the room from each other. They nursed and snuggled, loved to be held and swaddled. They were both thumb suckers--opposite thumbs--and looked so cute lying side by side, sucking their thumbs. As they grew, they occasionally sucked each others thumb, or foot, or whatever they could grab, which we saw as incredibly sweet and endearing.
Their growth was slow, and they spit up a LOT, but at first we thought it was just overeating, and then 'forceful let down' (a breastfeeding phenomenon which some 'lucky' moms have, in which the milk practically sprays into baby's mouth). Just before they were three months old, when they were still wearing preemie sized clothing and had not yet doubled their birth weight (which for Artist was 6 pounds 13 ounces), their pediatrician diagnosed acid reflux, and we medicated them for it. It didn't help. By Christmas, I was pumping milk and mixing it with cereal--that didn't work, either. New Year's Day was spent in the hospital with Artist--the babies had a virus, and Artist was dehydrated. We spent the next two months accepting that they could not process my breast milk and finding a formula that worked (Similac Sensitive AR, only available in ready to feed, with a secret ingredient of gold, apparently, based on the price), and then they finally started to grow. We all breathed a sigh of relief, and settled in to enjoy our babies.
That relaxation only lasted a few weeks. Artist always, always had an odd affect to him—there was just something otherworldly about him. It was like he had come from some other place, and intended to return there soon. It terrified me. So when he turned blue at around six months, I panicked. A LOT. We took him to his pediatrician, and his oxygen levels were fine. We took him to a cardiologist, a kidney specialist, even a specialist who dealt with childhood arthritis, and no one could tell us what was wrong. We still don’t know what was causing the problems, but theorize that it was a circulation issue caused by damage done by the twin to twin transfusion. He has lost the disconnected affect, and as he has gotten older the ‘attacks’ have decreased in frequency and severity. But occasionally, he still turns blue. Usually his lips, hands, and feet, but sometimes his limbs are blueish and mottled as well. Sometimes, his lips ‘harlequin’, so that half his lips are normal and the other half is blue. It’s still a frightening thing to see.
At their one year check up, I was told that they were a little behind, but that was to be expected both with twins and with their struggles the first few months. At their 18 month checkup, I brought up autism for the first time, mostly in reference to Fighter. My pediatrician (who would retire to academia soon after) told me that he himself had an autistic son, and that while we were free to have our son screened, in his opinion our son was not autistic. We breathed a sigh of relief, but unconsciously, I was still concerned. There was just something different about our boys. On the other hand, there was something different about ALL of our boys, so we tried to just tell ourselves it was just who they were.
At their two year check up, our pediatrician had changed, and the experience was insane. The kids were absolutely wild, and my attempts to talk with the pediatrician were in the middle of chaos. Still though, he said it looked like the boys were a little behind in speech, but we would review it again later, and it was probably nothing to worry about.
By the time everyone agreed the boys may have a delay, they were 2.5 years old. In West Virginia, there is a wonderful service for children called the birth to three program, designed to help young children and their families get 'caught up' before the school years start. By the time we all agreed there was a problem, however, my boys were really too old for the program. So I waited until the school year started and scheduled them for a speech evaluation, fully expecting to spend the year taking them to speech therapy. After just a few minutes with the boys, the therapist said "These boys need SO much more than just speech!" and in a whirlwind, we were enrolled in preschool, almost two years earlier than we had planned for them to be. A few months into preschool, the teacher gently suggested we consider an OT evaluation, and so we found a therapy center and the boys began speech an occupational therapy, and Fighter started physical therapy to address a weak core and poor body awareness. We took them to a family therapist as well, and still the closest thing to a diagnosis we got was 'developmentally delayed'.
We are not ignorant people. We read, we research, we ask questions. So we knew the direction we were heading, and were actually just surprised that no one was willing to give us a diagnosis. Finally, I contacted a local agency for case management services (I found myself completely overwhelmed, as well as with mounting debt), and they told me that before they could help, I needed an official diagnosis. We have a developmental evaluation scheduled, but that's still a while away. My Father in Law called in a favor and got someone he trusted (a psychologist with years of experience in both private practice and the education system) to do an evaluation. He gave up a Saturday and evaluated our three boys. He gave us his preliminary findings that day. We talked about Superhero a lot—his behaviors were really affecting his performance at school, and as he wasn’t currently receiving outside services, this was the only input we were getting for him. Then we talked about Fighter, who we strongly suspected was autistic, a suspicion confirmed by the psychologist.
He told us Artist had sat for half an hour and took an IQ test—longer than any other three year old he had worked with. And then I said ‘so what do you think is going on with him?’, and with the nonchalance one expresses when requesting sweet tea with dinner, he told us he thought Artist had brain damage.
It was like he had dropped a grenade at our feet, and all we could do was stare at it until it exploded.
We were shocked, but in hindsight, we shouldn’t have been. We know what he saw that gave him that suspicion—droopy eyelids, an odd slur to his voice, difficulty searching for the appropriate words when trying to communicate.
We have more to do. There will still be a complete developmental evaluation for Fighter and Artist, and possibly for Superhero later on, as well. Artist will need an MRI and/or CT scan to confirm the psychologist’s suspicions. Then there will be data analysis and treatment plans and work work work! We will get expert opinions, where we will all but beg for guarantees from people who would love to give them to us, but simply can’t. There will be smiles and tears and screams of frustration. And it will be a long, long journey.
But for now, we are enjoying our Artist. He began drawing and painting before he was walking, and it is still his favorite thing to do. His current favorite is drawing people—circles with eyes and hair and a nose and a mouth, sometimes ears, and occasionally legs and arms. He is currently in a tyrant phase, ordering everyone about and falling into complete meltdown whenever he is told no. And when he laughs, I am sure the angels stop to listen.
Artist is like a force of nature, and it remains to be seen which direction his winds will blow. The only thing I know for sure is that I will do my best to go with him, to let him direct us to a future that fulfills him, delights him, and brings him joy.
UPDATE: The official report from the psychologist listed autism as a diagnosis, with only a brief reference to 'neurophysical symptoms'. After discussing it with him, I think the psychologist stands by his original assessment, but generally wishes he hadn't given it to me :P He is concerned, I think, that both Artist's parents and his professional staff will treat him differently if they think he has physical damage to his brain, and seems to believe that he will show substantial improvement with his current treatment regimen. We will be discussing this with the treatment team scheduled to evaluate the boys at a children's hospital soon, and will probably bring up the matter and request MRI's then.
Fighter
(Some of this is identical to Artist’s story. That’s because they’re twins, and some of the information overlaps. I’m lazy and didn’t see the point in trying to rephrase the parts that were identical :P)
The day I found out I was pregnant with twins, I sobbed hysterically. I was SO nauseous, the vertigo was making it impossible to function, and I couldn't imagine dealing with more. And I knew twins meant more, along with a host of other worries.
I was SO right. A few weeks later, though, I started getting excited about it. I had always imagined having twin girls, just like the Sweet Valley High sisters. They would be beautiful and close and wonderful people, and their big brother would be proud and protective.
And then we discovered our twins were boys. Luckily, this was two days after I had decided that I wasn't sure I wanted girls, that my boy was perfect and two more boys would be that much more perfection. Everyone assumed I was disappointed--I had made no secret of wanting a girl. But I was secretly glad. In my mind, girls are harder to raise than boys, and I couldn't imagine having another me in the house. :D
Fighter was Baby A. Our OB is a big believer in ultrasounds, and I was high risk before we found out there were two babies in there, so we were able to chronicle our pregnancy with frequent ultrasounds. Fighter was bigger than Artist in the beginning, significantly so around months 3 and 4, and then slowly, Artist began to catch up. And then surpass Fighter. I was concerned, but no one else was--after all, they were still both healthy sizes, with strong heartbeats. Fetal movements began to decrease alarmingly near the end, but then, of course they did--there was no more room! They were also amazingly strong already, cracking my ribs repeatedly during the last couple of months.
At 36 weeks, 6 days gestation, the physician's assistant handling my twice-a-week checkups said my blood pressure was too high. It had been slowly climbing throughout the pregnancy, and my kidneys were also having issues. Fetal movements were down, also, but no more so than they had been for two weeks. Nevertheless, she wanted me to go to the hospital--the larger hospital with the prenatal unit, not the smaller hospital where I wanted to deliver. The smaller hospital would not allow me there until I was 37 weeks. So I politely said no, I'll see you in two days, and left. She then tracked down my OB, who was not on call but was the head of obstetrics at my preferred hospital, and got his permission for me to go there. And then she called MY MOTHER, who happened to live near her, and told her to make me go to the hospital. I had just picked up my oldest and we had taken him out for a family dinner that we suspected would be the last before his brothers arrived, and my parents tracked us down at the video store, preparing for a family movie night. This is the sort of thing that happens when you live in a small town :P
I asked my OB to put off delivery. I wanted the boys' lungs to develop. And I told him in no uncertain terms that I wasn't prepared for a stay in the NICU--the pregnancy itself had sapped every bit of inner strength I had, and I simply had no more left. And then I joked "Besides, you promised me September babies, with pretty sapphires for my mother's jewelry. August is peridots. Peridots are simply not as pretty as sapphires." My OB saw right through my frivolous reasoning to the heart of the matter--part of the reason I trust my life and that of my children to him--and agreed to wait. Until September 1, four days away. But only if I would agree to an amniocentesis, a c-section instead of risking my blood pressure would go even higher during delivery, and only if I would stay there, in the hospital, in bed, until then. I agreed.
September 1 was a Saturday, and I was more than a little surprised not only that my OB had agreed to that delay but also that he had managed to assemble the team he had on a Saturday morning--my OB was there, as was my pediatrician, an anesthesiologist, and an additional doctor (I suspect a cardiologist, since they were concerned about my blood pressure). There was an RN to assist each doctor, and an additional RN for each of the twins. And there were two LPNs. That's right--a medical staff of 12 for what I assumed was a routine delivery. There was barely room for my husband in the operating room!
Things started off rocky--I crashed on the table after the spinal block was inserted. My blood pressure just bottomed out, much as it had during the beginning of the pregnancy. The anesthesiologist, who has one of the most calming voices I have ever heard, got the situation under control in about ten minutes, but it was pretty frightening there for a bit. In addition, there's only a short amount of time for a conscious c-section delivery (approximately 30 minutes) and if you go beyond that, then you need to put mom to sleep, which increases the risk of complication for everyone. So we were on a pretty tight time table. In addition, my OB wrongfully assumed that my little ones would be, well, little--twin sized, not normal baby sized :P He made the incisions smaller than he would have otherwise, and had some difficulties maneuvering the babies out, and because of the shortened time table didn't have time to make it larger.
Fighter gave a strong wail and then peed all over the doctor--an act his twin repeated two minutes later. The OB insisted this was a good sign though, and handed him to the pediatrician to deliver Artist. The room got incredibly quiet a few seconds later, and there was a lot of whispering going on. Fighter didn't have enough blood in his body and was having some difficulty breathing. He needed an IV and some oxygen. This was our first hint that the twins had twin to twin transfusion, a condition in which one twin 'vampires' from the other, with one being born with too much blood and the second with too little. Twin to twin transfusion usually only occurs in identical twins with a single placenta. After delivery, my OB took quite some time examining the placenta, even at one point holding it up to the light. He told me later that he was unable to determine if it was a single placenta or two placentas that had fused. In either case, and despite the fact that I am now mostly sure my twins are fraternal, it is clear that they did in fact have twin to twin transfusion.
A further exam by our pediatrician revealed that Fighter also had a few cosmetic birth defects (such as being tongue tied) and a more worrisome heart murmur. My OB kept me fairly well drugged for the rest of the day--from the behavior of the nurses, I suspect the prescription said 'give her more medication whenever she becomes remotely coherent'--so while I kept asking about my little Fighter, I spent most of my time unconscious, snuggled into the hospital bed with Artist, with family members close by to grab him whenever I nodded off and allowed them to do so. Hubby, on the other hand, stayed by the oxygen tent, talking to our little bundle and telling him to fight. The nurses brought him to me wearing oxygen when he was just a few hours old so that he could nurse. His O2 saturation kept dropping, and when it hit the magic number (I want to say 80) they whisked him away as if he had never been there, but for a few brief moments, he latched and nursed and looked into my eyes, and I fell in love in the most heartbreaking way possible--I knew this child now held my heart in his teeny, tiny hand, and there was nothing I could do about it.
When Fighter was 12 hours old, they removed the oxygen for good, and I felt like I had my babies. We put them into the same bassinet--they shared a womb, it just felt cruel to put them across the room from each other. They nursed and snuggled, loved to be held and swaddled. They were both thumb suckers--opposite thumbs--and looked so cute lying side by side, sucking their thumbs. As they grew, they occasionally sucked each others thumb, or foot, or whatever they could grab, which we saw as incredibly sweet and endearing.
Their growth was slow, and they spit up a LOT, but at first we thought it was just overeating, and then 'forceful let down' (a breastfeeding phenomenon which some 'lucky' moms have, in which the milk practically sprays into baby's mouth). Just before they were three months old, when they were still wearing preemie sized clothing and had not yet doubled their birth weight (which for Fighter was 6 pounds 6 ounces), their pediatrician diagnosed acid reflux, and we medicated them for it. It didn't help. By Christmas, I was pumping milk and mixing it with cereal--that didn't work, either. New Year's Day was spent in the hospital with Artist--the babies had a virus, and Artist was dehydrated. We spent the next two months accepting that they could not process my breast milk and finding a formula that worked (Similac Sensitive AR, only available in ready to feed, with a secret ingredient of gold, apparently, based on the price), and then they finally started to grow. We all breathed a sigh of relief, and settled in to enjoy our babies.
At their one year check up, I was told that they were a little behind, but that was to be expected both with twins and with their struggles the first few months. At their 18 month checkup, I brought up autism for the first time. My pediatrician (who would retire to academia soon after) told me that he himself had an autistic son, and that while we were free to have our son screened, in his opinion our son was not autistic. We breathed a sigh of relief, but unconsciously, I was still concerned--while our son was not the 'extreme' that is the stereotype for autism, there was still something different about him, and I wasn't sure what it was.
At their two year check up, our pediatrician had changed, and the experience was insane. The kids were absolutely wild, and my attempts to talk with the pediatrician were in the middle of chaos. Still though, he said it looked like the boys were a little behind in speech, but we would review it again later, and it was probably nothing to worry about.
By the time everyone agreed the boys may have a delay, the boys were 2.5 years old. In West Virginia, there is a wonderful service for children called the birth to three program, designed to help young children and their families get 'caught up' before the school years start. By the time we all agreed there was a problem, however, my boys were really too old for the program. So I waited until the school year started and scheduled them for a speech evaluation, fully expecting to spend the year taking them to speech therapy. After just a few minutes with the boys, the therapist said "These boys need SO much more than just speech!" and in a whirlwind, we were enrolled in preschool, almost two years earlier than we had planned for them to be. A few months into preschool, the teacher gently suggested we consider an OT evaluation, and so we found a therapy center and the boys began speech an occupational therapy, and Fighter started physical therapy to address a weak core and poor body awareness. We took them to a family therapist as well, and still the closest thing to a diagnosis we got was 'developmentally delayed'.
We are not ignorant people. We read, we research, we ask questions. So we knew the direction we were heading, and were actually just surprised that no one was willing to give us a diagnosis. Finally, I contacted a local agency for case management services (I found myself completely overwhelmed, as well as with mounting debt), and they told me that before they could help, I needed an official diagnosis. We have a developmental evaluation scheduled, but that's still a while away. My Father in Law called in a favor and got someone he trusted (a psychologist with years of experience in both private practice and the education system) to do an evaluation. And he told us Fighter has autism.
We were not surprised. We were upset, but only because we know the work that is ahead of us, and because no one can guarantee that Fighter will ever live on his own or have an independent life. I have read a lot of blogs and stories written by parents about finding out their child was autistic, and there are lots of variations on 'our whole world changed' or 'life as we knew it ended.' Many experts even suggest a mourning period, to allow the parents to 'grieve' for the child they lost. I didn't feel any of that. We were thrown, don't get me wrong, but it was more from confirmation that all three of our boys were special needs, and the shock of getting that information all at once, than from the diagnosis itself. Fighter was the same child after the evaluation as he was before the evaluation. The only thing that had changed was that we now had an inkling of how much work was ahead of us, and we no longer could hold out hope for the 'bad parent' diagnosis (the one where the expert just says "oh, the child is fine, you just need to do this this and this to become a better parent and all will be well").
Fighter is an amazing child. His view of the world is so unique, so amazing, that I feel blessed to be able to share it with him. And he is a fighter. If anyone can overcome hardships, it's my little Fighter. He's been doing it since before he was born, and that skill will serve him well for the next 80 or 90 years :D .
The day I found out I was pregnant with twins, I sobbed hysterically. I was SO nauseous, the vertigo was making it impossible to function, and I couldn't imagine dealing with more. And I knew twins meant more, along with a host of other worries.
I was SO right. A few weeks later, though, I started getting excited about it. I had always imagined having twin girls, just like the Sweet Valley High sisters. They would be beautiful and close and wonderful people, and their big brother would be proud and protective.
And then we discovered our twins were boys. Luckily, this was two days after I had decided that I wasn't sure I wanted girls, that my boy was perfect and two more boys would be that much more perfection. Everyone assumed I was disappointed--I had made no secret of wanting a girl. But I was secretly glad. In my mind, girls are harder to raise than boys, and I couldn't imagine having another me in the house. :D
Fighter was Baby A. Our OB is a big believer in ultrasounds, and I was high risk before we found out there were two babies in there, so we were able to chronicle our pregnancy with frequent ultrasounds. Fighter was bigger than Artist in the beginning, significantly so around months 3 and 4, and then slowly, Artist began to catch up. And then surpass Fighter. I was concerned, but no one else was--after all, they were still both healthy sizes, with strong heartbeats. Fetal movements began to decrease alarmingly near the end, but then, of course they did--there was no more room! They were also amazingly strong already, cracking my ribs repeatedly during the last couple of months.
At 36 weeks, 6 days gestation, the physician's assistant handling my twice-a-week checkups said my blood pressure was too high. It had been slowly climbing throughout the pregnancy, and my kidneys were also having issues. Fetal movements were down, also, but no more so than they had been for two weeks. Nevertheless, she wanted me to go to the hospital--the larger hospital with the prenatal unit, not the smaller hospital where I wanted to deliver. The smaller hospital would not allow me there until I was 37 weeks. So I politely said no, I'll see you in two days, and left. She then tracked down my OB, who was not on call but was the head of obstetrics at my preferred hospital, and got his permission for me to go there. And then she called MY MOTHER, who happened to live near her, and told her to make me go to the hospital. I had just picked up my oldest and we had taken him out for a family dinner that we suspected would be the last before his brothers arrived, and my parents tracked us down at the video store, preparing for a family movie night. This is the sort of thing that happens when you live in a small town :P
I asked my OB to put off delivery. I wanted the boys' lungs to develop. And I told him in no uncertain terms that I wasn't prepared for a stay in the NICU--the pregnancy itself had sapped every bit of inner strength I had, and I simply had no more left. And then I joked "Besides, you promised me September babies, with pretty sapphires for my mother's jewelry. August is peridots. Peridots are simply not as pretty as sapphires." My OB saw right through my frivolous reasoning to the heart of the matter--part of the reason I trust my life and that of my children to him--and agreed to wait. Until September 1, four days away. But only if I would agree to an amniocentesis, a c-section instead of risking my blood pressure would go even higher during delivery, and only if I would stay there, in the hospital, in bed, until then. I agreed.
September 1 was a Saturday, and I was more than a little surprised not only that my OB had agreed to that delay but also that he had managed to assemble the team he had on a Saturday morning--my OB was there, as was my pediatrician, an anesthesiologist, and an additional doctor (I suspect a cardiologist, since they were concerned about my blood pressure). There was an RN to assist each doctor, and an additional RN for each of the twins. And there were two LPNs. That's right--a medical staff of 12 for what I assumed was a routine delivery. There was barely room for my husband in the operating room!
Things started off rocky--I crashed on the table after the spinal block was inserted. My blood pressure just bottomed out, much as it had during the beginning of the pregnancy. The anesthesiologist, who has one of the most calming voices I have ever heard, got the situation under control in about ten minutes, but it was pretty frightening there for a bit. In addition, there's only a short amount of time for a conscious c-section delivery (approximately 30 minutes) and if you go beyond that, then you need to put mom to sleep, which increases the risk of complication for everyone. So we were on a pretty tight time table. In addition, my OB wrongfully assumed that my little ones would be, well, little--twin sized, not normal baby sized :P He made the incisions smaller than he would have otherwise, and had some difficulties maneuvering the babies out, and because of the shortened time table didn't have time to make it larger.
Fighter gave a strong wail and then peed all over the doctor--an act his twin repeated two minutes later. The OB insisted this was a good sign though, and handed him to the pediatrician to deliver Artist. The room got incredibly quiet a few seconds later, and there was a lot of whispering going on. Fighter didn't have enough blood in his body and was having some difficulty breathing. He needed an IV and some oxygen. This was our first hint that the twins had twin to twin transfusion, a condition in which one twin 'vampires' from the other, with one being born with too much blood and the second with too little. Twin to twin transfusion usually only occurs in identical twins with a single placenta. After delivery, my OB took quite some time examining the placenta, even at one point holding it up to the light. He told me later that he was unable to determine if it was a single placenta or two placentas that had fused. In either case, and despite the fact that I am now mostly sure my twins are fraternal, it is clear that they did in fact have twin to twin transfusion.
A further exam by our pediatrician revealed that Fighter also had a few cosmetic birth defects (such as being tongue tied) and a more worrisome heart murmur. My OB kept me fairly well drugged for the rest of the day--from the behavior of the nurses, I suspect the prescription said 'give her more medication whenever she becomes remotely coherent'--so while I kept asking about my little Fighter, I spent most of my time unconscious, snuggled into the hospital bed with Artist, with family members close by to grab him whenever I nodded off and allowed them to do so. Hubby, on the other hand, stayed by the oxygen tent, talking to our little bundle and telling him to fight. The nurses brought him to me wearing oxygen when he was just a few hours old so that he could nurse. His O2 saturation kept dropping, and when it hit the magic number (I want to say 80) they whisked him away as if he had never been there, but for a few brief moments, he latched and nursed and looked into my eyes, and I fell in love in the most heartbreaking way possible--I knew this child now held my heart in his teeny, tiny hand, and there was nothing I could do about it.
When Fighter was 12 hours old, they removed the oxygen for good, and I felt like I had my babies. We put them into the same bassinet--they shared a womb, it just felt cruel to put them across the room from each other. They nursed and snuggled, loved to be held and swaddled. They were both thumb suckers--opposite thumbs--and looked so cute lying side by side, sucking their thumbs. As they grew, they occasionally sucked each others thumb, or foot, or whatever they could grab, which we saw as incredibly sweet and endearing.
Their growth was slow, and they spit up a LOT, but at first we thought it was just overeating, and then 'forceful let down' (a breastfeeding phenomenon which some 'lucky' moms have, in which the milk practically sprays into baby's mouth). Just before they were three months old, when they were still wearing preemie sized clothing and had not yet doubled their birth weight (which for Fighter was 6 pounds 6 ounces), their pediatrician diagnosed acid reflux, and we medicated them for it. It didn't help. By Christmas, I was pumping milk and mixing it with cereal--that didn't work, either. New Year's Day was spent in the hospital with Artist--the babies had a virus, and Artist was dehydrated. We spent the next two months accepting that they could not process my breast milk and finding a formula that worked (Similac Sensitive AR, only available in ready to feed, with a secret ingredient of gold, apparently, based on the price), and then they finally started to grow. We all breathed a sigh of relief, and settled in to enjoy our babies.
At their one year check up, I was told that they were a little behind, but that was to be expected both with twins and with their struggles the first few months. At their 18 month checkup, I brought up autism for the first time. My pediatrician (who would retire to academia soon after) told me that he himself had an autistic son, and that while we were free to have our son screened, in his opinion our son was not autistic. We breathed a sigh of relief, but unconsciously, I was still concerned--while our son was not the 'extreme' that is the stereotype for autism, there was still something different about him, and I wasn't sure what it was.
At their two year check up, our pediatrician had changed, and the experience was insane. The kids were absolutely wild, and my attempts to talk with the pediatrician were in the middle of chaos. Still though, he said it looked like the boys were a little behind in speech, but we would review it again later, and it was probably nothing to worry about.
By the time everyone agreed the boys may have a delay, the boys were 2.5 years old. In West Virginia, there is a wonderful service for children called the birth to three program, designed to help young children and their families get 'caught up' before the school years start. By the time we all agreed there was a problem, however, my boys were really too old for the program. So I waited until the school year started and scheduled them for a speech evaluation, fully expecting to spend the year taking them to speech therapy. After just a few minutes with the boys, the therapist said "These boys need SO much more than just speech!" and in a whirlwind, we were enrolled in preschool, almost two years earlier than we had planned for them to be. A few months into preschool, the teacher gently suggested we consider an OT evaluation, and so we found a therapy center and the boys began speech an occupational therapy, and Fighter started physical therapy to address a weak core and poor body awareness. We took them to a family therapist as well, and still the closest thing to a diagnosis we got was 'developmentally delayed'.
We are not ignorant people. We read, we research, we ask questions. So we knew the direction we were heading, and were actually just surprised that no one was willing to give us a diagnosis. Finally, I contacted a local agency for case management services (I found myself completely overwhelmed, as well as with mounting debt), and they told me that before they could help, I needed an official diagnosis. We have a developmental evaluation scheduled, but that's still a while away. My Father in Law called in a favor and got someone he trusted (a psychologist with years of experience in both private practice and the education system) to do an evaluation. And he told us Fighter has autism.
We were not surprised. We were upset, but only because we know the work that is ahead of us, and because no one can guarantee that Fighter will ever live on his own or have an independent life. I have read a lot of blogs and stories written by parents about finding out their child was autistic, and there are lots of variations on 'our whole world changed' or 'life as we knew it ended.' Many experts even suggest a mourning period, to allow the parents to 'grieve' for the child they lost. I didn't feel any of that. We were thrown, don't get me wrong, but it was more from confirmation that all three of our boys were special needs, and the shock of getting that information all at once, than from the diagnosis itself. Fighter was the same child after the evaluation as he was before the evaluation. The only thing that had changed was that we now had an inkling of how much work was ahead of us, and we no longer could hold out hope for the 'bad parent' diagnosis (the one where the expert just says "oh, the child is fine, you just need to do this this and this to become a better parent and all will be well").
Fighter is an amazing child. His view of the world is so unique, so amazing, that I feel blessed to be able to share it with him. And he is a fighter. If anyone can overcome hardships, it's my little Fighter. He's been doing it since before he was born, and that skill will serve him well for the next 80 or 90 years :D .
Superhero
Superhero is currently 6 years old, and is very big for his age (he wears size 8 clothing, and is currently 4'5" tall!). He has an amazing intellect, and his reading level is on par with that of a high school student.
Superhero spoke in complete sentences when most children his age were still using single-syllable words to express their needs. He was a breastfed baby who never had formula and self weaned at 17 months (and threw away his pacifier a month later). He walked a little late (around 13.5 months), and in fact hit most of his physical milestones on the later side of 'normal'. Since he hit his cognitive and speech milestones earlier than average, however, we weren't concerned. He was a fiercely independent baby, determined to do things on his own. One of his first words was 'light', and he would spend extended periods blissfully trying to 'catch' the sunbeams streaming through the window.
Superhero was an easygoing baby, easily adapting himself to nearly any situation. Long car trips, erratic schedules, crowds or solitude didn't seem to affect him. In fact, until his brothers were born just a few months before his third birthday, he was a model child. Even when his behavior changed drastically just after his third birthday, even when we joked that if we had known what three year olds were like we would never have had another baby, even then we assumed that his behavior was simply a reaction to spending a lot of time away during the last few months of my pregnancy (he spent a lot of time with my parents) and to having two new babies in the house. It never occurred to us that his behavior was anything other than that of a three year old dealing with his new status as big brother.
He attended a private preschool at four, and he struggled. Academically, he was fine, but his behavior was inappropriate at best. He was disruptive, often uncooperative, and occasionally aggressive (though this was mostly due to his size rather than actual aggressive behavior). Worse, when I observed him with his class, he always seemed a bit disconnected, as if he was alone in his own little bubble. He desperately tried to break out of that bubble, but seemed unsure how best to do that.
We expressed our concerns to his kindergarten teachers and principals, both of whom assured us that they were sure he would blossom in the more structured kindergarten environment. He did not. Within a few months, he had developed an ulcer and was expressing suicidal thoughts to us (there is little on this earth more frightening to the heart of a mother than hearing her child say he wished he were "dead and under the dirt"). We sought the assistance of a counselor, who tested his IQ and told us he had a below average attention span and an above average intellect (knew that, thanks). Another 'expert' told us simply that we needed to parent him better, without giving us any advice on how to do so, but assured us that he most certainly was NOT autistic.
Let me pause for a moment to say that this last sentence was exactly what I wanted to hear. All I wanted was to be told my child was fine, I just needed to do a better job as his mother. To me, this was the best possible outcome--I could take a class or two, read a few books, maybe even undergo some therapy myself, and I could make all my son's problems go away (technically sons' problems, but I'm only talking about Superhero for this post :P) If I just tried harder, knew more, GAVE more, then he would be fine. All he needed was a better mother, and if all else failed, I could find him a better mother.
Sound familiar? If so, take a minute to think about it. Alternatively, think about all the people who are telling you that this is true--that all your child needs is more discipline, more structure, more reinforcement, more time. Ask yourself if you believe it--do you really think you're not trying hard enough? Do you really think that just a little more effort on your part is going to fix everything? If so, then by all means put forth the effort. But if the thought of giving any more makes you feel empty, desperate, lost, then please, take a moment and consider that it may not be YOU.
But back to my Superhero. :D While I was still dealing with trying to figure out exactly how to parent him better, we were told our younger two needed an official diagnosis to expand the treatments they were receiving, and my wonderful Father-in-Law called in a few favors to get evaluations done in a few weeks rather than the months and months it was going to take elsewhere. At the last minute, we asked that Superhero be evaluated as well, hoping to get SOME clue as to what he needed, or at the very least have an official 'there is nothing wrong with this child other than his parents' diagnosis. Again, I want to say that the last was what I was wishing for. However, just a few weeks before, after the third 'program' tried by his school counselor failed to illicit any improvement in his classroom behavior and we were left with little more than a hope that he would magically improve over the summer, I had begun to strongly question the earlier analysis of our parenting. After all, the person who made that analysis had met with Superhero for a total of 15 minutes, with other people in the room, and in a controlled, new environment. His school had had him for 8 hours a day for almost an entire school year at this point, and they, too, were struggling for answers. How could the problem be that NONE of the adults in his life--parents, grandparents, teachers, counselors--had figured out the 'correct' parenting techniques, particularly when we had all tried so many different approaches? I was willing to believe that I was somehow lacking, but it was harder for me to accept that kindergarten teachers with decades of experience, a principal who had been working with elementary students for years, and a school counselor trained in dealing with children and their idiosyncrasies could all be 'bad parents'. (I'll explore this more fully in a later post).
So we took him to the specialist--a psychologist with years of experience working with children and the state education system. And a few hours later, our preliminary diagnosis was in--ADHD, the symptoms of which were masking Asperger's Syndrome.
We weren't shocked by any means. We had actually discussed ADHD a few weeks before as a possibility. Moreover, we were expecting an autism diagnosis for at least one of our twins, and all the latest research tells us that if one child is autistic, the other children in the household are likely to exhibit autism, or at least aspects of it, too. We had, as best we could, prepared ourselves for this diagnosis. In addition, we saw it not as an end, but rather another piece to the puzzle, another avenue to explore in our search to help our son realize his potential.
What we hadn't considered was the effect the news would have on Superhero. We didn't discuss it in advance, but we have always attempted age-appropriate honesty with our children, so not telling him about it wasn't even a consideration in my mind. It took him a few days to absorb the news, and to be honest, I'm still not sure he's grasped all of it. Our first conversation about it went something like this:
Superhero: So what is Asperger's? Does it mean there's something wrong with me?
Me: No, it just means your brain works in a different way than some other people's.
Superhero: So my brain is wrong?
me: No, it's not wrong. More like . . . it's more like a superpower. Your brain is so amazing that it's a superpower. The problem is that you don't know how to control your powers yet.
Superhero: You mean like the X-Men, the kids?
Me: yes, a lot like the X-men. You need to learn to control your superpowers just like the x-men needed to learn to control their powers.
A few days later . . .
Superhero: Mommy, am I an alien?
me: no, why would you ask that?
Superhero: 'cause sometimes I feel like an alien, like this isn't really my planet.
A friend posted this link on their facebook page a few days later, and Superhero really seemed to like it.
So that's where we are. Superhero will finish up kindergarten in just a few days, and we will consider ADHD medications this summer. I am also going to consult an occupational therapist to see if she thinks OT would help him. He has already shown vast improvement since his preschool days, and we fully expect even more improvement now that we have some idea of what's going on with him.
Superhero spoke in complete sentences when most children his age were still using single-syllable words to express their needs. He was a breastfed baby who never had formula and self weaned at 17 months (and threw away his pacifier a month later). He walked a little late (around 13.5 months), and in fact hit most of his physical milestones on the later side of 'normal'. Since he hit his cognitive and speech milestones earlier than average, however, we weren't concerned. He was a fiercely independent baby, determined to do things on his own. One of his first words was 'light', and he would spend extended periods blissfully trying to 'catch' the sunbeams streaming through the window.
Superhero was an easygoing baby, easily adapting himself to nearly any situation. Long car trips, erratic schedules, crowds or solitude didn't seem to affect him. In fact, until his brothers were born just a few months before his third birthday, he was a model child. Even when his behavior changed drastically just after his third birthday, even when we joked that if we had known what three year olds were like we would never have had another baby, even then we assumed that his behavior was simply a reaction to spending a lot of time away during the last few months of my pregnancy (he spent a lot of time with my parents) and to having two new babies in the house. It never occurred to us that his behavior was anything other than that of a three year old dealing with his new status as big brother.
He attended a private preschool at four, and he struggled. Academically, he was fine, but his behavior was inappropriate at best. He was disruptive, often uncooperative, and occasionally aggressive (though this was mostly due to his size rather than actual aggressive behavior). Worse, when I observed him with his class, he always seemed a bit disconnected, as if he was alone in his own little bubble. He desperately tried to break out of that bubble, but seemed unsure how best to do that.
We expressed our concerns to his kindergarten teachers and principals, both of whom assured us that they were sure he would blossom in the more structured kindergarten environment. He did not. Within a few months, he had developed an ulcer and was expressing suicidal thoughts to us (there is little on this earth more frightening to the heart of a mother than hearing her child say he wished he were "dead and under the dirt"). We sought the assistance of a counselor, who tested his IQ and told us he had a below average attention span and an above average intellect (knew that, thanks). Another 'expert' told us simply that we needed to parent him better, without giving us any advice on how to do so, but assured us that he most certainly was NOT autistic.
Let me pause for a moment to say that this last sentence was exactly what I wanted to hear. All I wanted was to be told my child was fine, I just needed to do a better job as his mother. To me, this was the best possible outcome--I could take a class or two, read a few books, maybe even undergo some therapy myself, and I could make all my son's problems go away (technically sons' problems, but I'm only talking about Superhero for this post :P) If I just tried harder, knew more, GAVE more, then he would be fine. All he needed was a better mother, and if all else failed, I could find him a better mother.
Sound familiar? If so, take a minute to think about it. Alternatively, think about all the people who are telling you that this is true--that all your child needs is more discipline, more structure, more reinforcement, more time. Ask yourself if you believe it--do you really think you're not trying hard enough? Do you really think that just a little more effort on your part is going to fix everything? If so, then by all means put forth the effort. But if the thought of giving any more makes you feel empty, desperate, lost, then please, take a moment and consider that it may not be YOU.
But back to my Superhero. :D While I was still dealing with trying to figure out exactly how to parent him better, we were told our younger two needed an official diagnosis to expand the treatments they were receiving, and my wonderful Father-in-Law called in a few favors to get evaluations done in a few weeks rather than the months and months it was going to take elsewhere. At the last minute, we asked that Superhero be evaluated as well, hoping to get SOME clue as to what he needed, or at the very least have an official 'there is nothing wrong with this child other than his parents' diagnosis. Again, I want to say that the last was what I was wishing for. However, just a few weeks before, after the third 'program' tried by his school counselor failed to illicit any improvement in his classroom behavior and we were left with little more than a hope that he would magically improve over the summer, I had begun to strongly question the earlier analysis of our parenting. After all, the person who made that analysis had met with Superhero for a total of 15 minutes, with other people in the room, and in a controlled, new environment. His school had had him for 8 hours a day for almost an entire school year at this point, and they, too, were struggling for answers. How could the problem be that NONE of the adults in his life--parents, grandparents, teachers, counselors--had figured out the 'correct' parenting techniques, particularly when we had all tried so many different approaches? I was willing to believe that I was somehow lacking, but it was harder for me to accept that kindergarten teachers with decades of experience, a principal who had been working with elementary students for years, and a school counselor trained in dealing with children and their idiosyncrasies could all be 'bad parents'. (I'll explore this more fully in a later post).
So we took him to the specialist--a psychologist with years of experience working with children and the state education system. And a few hours later, our preliminary diagnosis was in--ADHD, the symptoms of which were masking Asperger's Syndrome.
We weren't shocked by any means. We had actually discussed ADHD a few weeks before as a possibility. Moreover, we were expecting an autism diagnosis for at least one of our twins, and all the latest research tells us that if one child is autistic, the other children in the household are likely to exhibit autism, or at least aspects of it, too. We had, as best we could, prepared ourselves for this diagnosis. In addition, we saw it not as an end, but rather another piece to the puzzle, another avenue to explore in our search to help our son realize his potential.
What we hadn't considered was the effect the news would have on Superhero. We didn't discuss it in advance, but we have always attempted age-appropriate honesty with our children, so not telling him about it wasn't even a consideration in my mind. It took him a few days to absorb the news, and to be honest, I'm still not sure he's grasped all of it. Our first conversation about it went something like this:
Superhero: So what is Asperger's? Does it mean there's something wrong with me?
Me: No, it just means your brain works in a different way than some other people's.
Superhero: So my brain is wrong?
me: No, it's not wrong. More like . . . it's more like a superpower. Your brain is so amazing that it's a superpower. The problem is that you don't know how to control your powers yet.
Superhero: You mean like the X-Men, the kids?
Me: yes, a lot like the X-men. You need to learn to control your superpowers just like the x-men needed to learn to control their powers.
A few days later . . .
Superhero: Mommy, am I an alien?
me: no, why would you ask that?
Superhero: 'cause sometimes I feel like an alien, like this isn't really my planet.
A friend posted this link on their facebook page a few days later, and Superhero really seemed to like it.
So that's where we are. Superhero will finish up kindergarten in just a few days, and we will consider ADHD medications this summer. I am also going to consult an occupational therapist to see if she thinks OT would help him. He has already shown vast improvement since his preschool days, and we fully expect even more improvement now that we have some idea of what's going on with him.
And so it begins
I started this blog for a simple and complicated reason: I wanted a place to talk about the challenges of raising our sons, without taking away from the blog dedicated to the pleasures of raising them. In an effort to protect their privacy, I have removed their names from their stories blog and will use pseudonyms on this blog as well. It is my hope that this blog will create a safe space to talk about my own frustrations, as well as create a place for others to find hope, strength, and support. Welcome aboard!
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