When we first started having our concerns about developmental delays, our new pediatrician gave us two options for Developmental Pediatricians. The first was at the Phoenix Children's Hospital and the other was The Melmed Center. We called the Phoenix Children's Hospital first. We were told that they only had one Developmental Pediatrician on staff, and they were currently booking appointments well into the next year (this was in December), and that our doctor would need to fax them a referral and the DP would choose which cases she would see when. So we called the Melmed Center. Thankfully, they let us schedule the appointments ourselves, and even though they were not until June, we were placed on a cancellation list.
A few months passed and the appointments were kind of forgotten about, at least put on the back burner. Then E.T. started showing some signs of regression. He was becoming increasingly clumsy and irritable. He was refusing to participate in his therapy sessions, spending the time throwing himself on the floor in tantrums instead. When we took him to familiar play areas, he would show fear and become stuck where just days previous he acted like he owned the place. I was getting concerned that something more serious than was going on. Even his Speech Therapist suggested that I take him for a neurological evaluation. I was back on Google, and everywhere I looked confirmed that regression was never a good sign. I called everyone I could think of; his early intervention support coordinator, his therapists, his pediatrician. No one had any way of getting our appointment with the Developmental Pediatrician moved up.
Then that Friday afternoon, my phone rang. It was the Melmed Center calling to let me know that they had had a cancellation Monday morning. Would I like the appointment? Um, yes!!! I almost cried. Finally, something was going our way. I went online, printed out they 30 page new client packet, and got busy filling out forms. By Monday morning, my fingers were numb, but I was beyond ready to get in and find out what was going on with my baby. E.T. however, felt differently. He was not having a good day, not that he had been having too many good days lately, but I was hoping for some more good luck.
The appointment was a nightmare. E.T. was miserable. He wanted nothing to do with anyone or anything. He stood at the door to the doctor's office crying and banging his head. He threw himself down on the floor, made himself bright red and would not calm down for anything. The doctor and I tried to talk for a few minutes, but finally she suggested that I go sit in my car so E.T. could watch a movie, and she would call me on the phone. This worked out alright. We talked for 15 or 20 minutes while E.T. calmed down, and then we went back on. She observed him playing, and even got him to participate in a few of her tests. I was relived that the appointment was not a waste, and she was relieved that her initial impression of his condition was much worse than what it actually ended up being.
When she finally wrote up her care plan for us to take home, she started talking about her initial diagnosis. She very casually stated that he had some severe developmental delays. His speech was at the level of a 10 -12 month old, his fine motor skills were around 14 - 16 months and his gross motor skills were not much better. Most of that I had known, and was expecting. Then she said that she was diagnosing him with encephalopathy unspecified (meaning disorder or disease of the brain of unknown origin). Even that I could understand. Something was not functioning properly in his brain or he wouldn't be as delayed as he was. Then came the unexpected. She said she had been working with children with all types of disorders for over 30 years, and she felt very comfortable diagnosing him as moderately Autistic, but would like to order further testing to confirm.
My ears started humming and I just stared at her. She didn't just say he was Autistic, that wasn't possible. I had already ruled that out. He pointed at things, he made eye contact, he didn't line up his toys. I expressed this to her, and she gave me a sympathetic smile. She explained how Autism was a spectrum disorder (ASD), and that the symptoms I was describing were the stereotyped symptoms that most people associate with children on the spectrum. However, there were many different ways a child could be affected, and to varying degrees. She said that E.T. fit many of the characteristics, and to a level that she felt could continue progressing to a more severe degree as he got older, especially since he been having some regression. She gave me a list of books to read, a number of a support group for Autistic children and their families and the number to apply for Long Term Care through the Department of Disabilities. I scheduled his appointment for testing, thanked her and left.
I made it all the way to my car, got E.T. buckled into his seat, and got myself settled. I started the car, turned the air up as high as it would go since I was suddenly on fire, covered my face and then I lost it. I cried for E.T., I cried for myself, I cried for my husband. I cried for the life I had envisioned for E.T. being lost. I looked in the rear-view mirror at my sweet, sweet boy. He was happily watching his cartoon again. I realized that nothing had changed for him. He was the same adorable, curious little monkey that he had been before we had left the house that morning. I was mourning the life that I had planned for him, one that he would have been unlikely to follow regardless of what this appointment told me. He was his own person, he was going to walk his own path no matter what a piece of paper told him. I stopped crying, and started planning. I smiled at my boy, told him I loved him, and put the car in drive. I had work to do.
Sunday, April 8, 2012
Wednesday, April 4, 2012
L.M., The Non-Comformist
My husband and I were trying to be the responsible adults we knew we were supposed to be by waiting until we were "financially ready" to have a baby. What a joke. I don't care how much money you sock away, unless you are loaded, you are never financially ready for a baby. Anyhow, we finally made it to that point in 2007, a few months before our fourth wedding anniversary and my 26th birthday. We were thrilled (and pretty shocked) to be making the pregnancy announcement within a few short weeks.
My little man wasted no time in making his presence known. This kid seriously knew how to push my buttons from the instant he was conceived. I spent the next nine months either throwing up, or crying in bed because it hurt to walk. L.M. found a nice comfy spot on my spine right around 4 months, specifically on my sciatic nerve, and refused to budge for the remainder of his incubation. I am not kidding. Multiple doctors, chiropractors and massage therapists attempted to dislodge him, but he was stubborn from the start. This also ensured that his sex was a delivery surprise, since after 5 ultrasounds, no one could determine anything about him, except that he did in fact have a spine.
As I neared the end of my pregnancy, I was assured that I had a big baby on my hands, and I should be prepared for him arrive a few weeks early. I went to bed every night for a month convinced that tonight was the night, and woke up morning after morning in tears. Finally, a week after my due date, my water broke. It was 4:00 in the afternoon, and I had actually just made it to the doctor's office because I was feeling ill. I started to undress and then noticed I was standing in a small puddle. I was sent home to wait for labor to start, and told to come back to the hospital when the contractions were strong and regular or at 4am, whichever came first. Can you guess which came first?
When we arrived at the hospital (yep, in the middle of the night), the nurse at the ER desk looked at me like I was the most naive thing she had ever seen. I suppose only first time mom's arrive to be induced with an entire entourage. More experienced moms know that the family has more than enough time to sleep in and come up later. Oh well, I was excited and she was bitter, so the heck with her. Anyhow, we got all settled in, and they started a Pitocin drip to kick start labor. Little did they know that there drugs were no match for my little guy. He was not coming out until he was good and ready. By mid afternoon the following day, I was finally starting to feel contractions. My in-laws asked if I was excited to finally be finding out if we were having a girl or a boy and I responded that I didn't care if it was a freaking raccoon, I just wanted it out. Here is where I will skip over the details, because it was the absolute worst delivery, ever. Like, should be used in high school sex ed classes. I promise you it would have had the ability to prevent pregnancies. I know it involved lots of screaming, eyes rolling into the back of heads and a terrified husband and a vow that I would NEVER, NOT IN A MILLION YEARS go through it again. Have I mentioned that I am not that great with pain? No... well, I may be a bit of a wuss.
When I finally have my baby in my arms (along with a stuffed raccoon that was conveniently located in the hospital gift shop), and look into his eyes for the first time, I know I'm a goner. The last nine months of hell are completely forgotten, at least for the most part. (You can ask anyone, I know how to hold a grudge.)
The next two weeks are heaven. Our new little family spends every waking minute laying in bed, watching movies, snuggling. I think I actually spent hours each day just staring at my perfect angel baby. So what if he only slept during the day for an hour or two at a time. What was the big deal if he refused to nurse for more than 30 seconds at a time. He was brand new, still adjusting, he would get the hang of things. At his two week check up we were advised to start supplementing his feedings with formula. He had lost a little weight, but otherwise was healthy.
The time had come to get out of bed and get back to reality. My husband started back to work, and L.M. and I tried to get into our new routine. Within a few days of that, L.M. started crying, and I am pretty sure he didn't stop for the next six months. Even then it didn't really stop, I think his lungs just finally needed a few hours break each day. We went back to the doctor. Again and again and again. We were assured that our little man just had a bad case of colic, and it would magically disappear around 12 weeks. We counted down the days for that magical number to hit, but either our calendar was busted or L.M. had not been keeping track properly. Back to the doctor. Don't worry, he has all the symptoms of GERD (gastro esophageal reflux disease), and a combination of (ridiculously expensive) hypoallergenic formula and acid reflux medicine would fix everything. Months on the meds, and there was no change.
We started to notice some patterns as L.M. got older. Eventually we would learn that he had a Sensory Processing Disorder, but at the time we learned to recognize what upset him, and then we avoided it all costs. We found that everything was worse when we were anywhere loud, bright or strong smelling. We limited the time we spent at family gatherings and didn't go to restaurants unless we had to. We spent the whole time we were out taking turns walking, and rocking, and soothing. We ate dinner in the car most nights, seeing how long we could keep driving without being stuck at a red light. The silence in the car was one of our few reprieves. We spent a fortune on fast food and gas, but it was so worth it. I gave up attempting to get anything done during the day and got used to L.M. not napping unless he was on my chest.
We rearranged our entire lives to revolve around L.M. and his quirks. We practically moved in with my ridiculously accommodating in-laws. They were one of the few reasons we kept our sanity. I cannot tell you how much better it can feel when someone else actually sees what you go through day after day. That one safe place where you don't ever have to defend yourself against assumptions that you are being dramatic or are a bad parent, because they have first hand knowledge that proves otherwise.
It is easy to look at a screaming child and assume that he or she is a spoiled brat. But if you took a minute to look closer, you might see a child that is so overcome by their environment that they can't do anything but scream. Instead of shooting them a dirty look, give them a sympathetic smile. Even if the kid really is just a brat, that one smile will do more than a million of your glares ever would.
Stop yourself the next time you want to tell an exasperated, overwhelmed new parent that they need to stop "coddling" their baby and then the baby will be forced to conform. Maybe that approach worked for your child, but for the kids who can't just "figure it out", it most likely will not. Unless you have been there, you have no idea what these parents are going through. Instead of offering up advice, offer to babysit for a night. Maybe they are unnecessary coddlers, they are still new parents, and could use a break.
I know three things for sure. First, L.M. was not just a brat; he was unhappy, uncomfortable and unprepared for his new world. Second, my little man was not a conformist then and he definitely isn't a conformist now. But you know what? He doesn't have to be. Third, he is mine and I wouldn't trade him for anything.
My little man wasted no time in making his presence known. This kid seriously knew how to push my buttons from the instant he was conceived. I spent the next nine months either throwing up, or crying in bed because it hurt to walk. L.M. found a nice comfy spot on my spine right around 4 months, specifically on my sciatic nerve, and refused to budge for the remainder of his incubation. I am not kidding. Multiple doctors, chiropractors and massage therapists attempted to dislodge him, but he was stubborn from the start. This also ensured that his sex was a delivery surprise, since after 5 ultrasounds, no one could determine anything about him, except that he did in fact have a spine.
As I neared the end of my pregnancy, I was assured that I had a big baby on my hands, and I should be prepared for him arrive a few weeks early. I went to bed every night for a month convinced that tonight was the night, and woke up morning after morning in tears. Finally, a week after my due date, my water broke. It was 4:00 in the afternoon, and I had actually just made it to the doctor's office because I was feeling ill. I started to undress and then noticed I was standing in a small puddle. I was sent home to wait for labor to start, and told to come back to the hospital when the contractions were strong and regular or at 4am, whichever came first. Can you guess which came first?
When we arrived at the hospital (yep, in the middle of the night), the nurse at the ER desk looked at me like I was the most naive thing she had ever seen. I suppose only first time mom's arrive to be induced with an entire entourage. More experienced moms know that the family has more than enough time to sleep in and come up later. Oh well, I was excited and she was bitter, so the heck with her. Anyhow, we got all settled in, and they started a Pitocin drip to kick start labor. Little did they know that there drugs were no match for my little guy. He was not coming out until he was good and ready. By mid afternoon the following day, I was finally starting to feel contractions. My in-laws asked if I was excited to finally be finding out if we were having a girl or a boy and I responded that I didn't care if it was a freaking raccoon, I just wanted it out. Here is where I will skip over the details, because it was the absolute worst delivery, ever. Like, should be used in high school sex ed classes. I promise you it would have had the ability to prevent pregnancies. I know it involved lots of screaming, eyes rolling into the back of heads and a terrified husband and a vow that I would NEVER, NOT IN A MILLION YEARS go through it again. Have I mentioned that I am not that great with pain? No... well, I may be a bit of a wuss.
 |
| L.M. Born 2-22-08 |
The next two weeks are heaven. Our new little family spends every waking minute laying in bed, watching movies, snuggling. I think I actually spent hours each day just staring at my perfect angel baby. So what if he only slept during the day for an hour or two at a time. What was the big deal if he refused to nurse for more than 30 seconds at a time. He was brand new, still adjusting, he would get the hang of things. At his two week check up we were advised to start supplementing his feedings with formula. He had lost a little weight, but otherwise was healthy.
The time had come to get out of bed and get back to reality. My husband started back to work, and L.M. and I tried to get into our new routine. Within a few days of that, L.M. started crying, and I am pretty sure he didn't stop for the next six months. Even then it didn't really stop, I think his lungs just finally needed a few hours break each day. We went back to the doctor. Again and again and again. We were assured that our little man just had a bad case of colic, and it would magically disappear around 12 weeks. We counted down the days for that magical number to hit, but either our calendar was busted or L.M. had not been keeping track properly. Back to the doctor. Don't worry, he has all the symptoms of GERD (gastro esophageal reflux disease), and a combination of (ridiculously expensive) hypoallergenic formula and acid reflux medicine would fix everything. Months on the meds, and there was no change.
We started to notice some patterns as L.M. got older. Eventually we would learn that he had a Sensory Processing Disorder, but at the time we learned to recognize what upset him, and then we avoided it all costs. We found that everything was worse when we were anywhere loud, bright or strong smelling. We limited the time we spent at family gatherings and didn't go to restaurants unless we had to. We spent the whole time we were out taking turns walking, and rocking, and soothing. We ate dinner in the car most nights, seeing how long we could keep driving without being stuck at a red light. The silence in the car was one of our few reprieves. We spent a fortune on fast food and gas, but it was so worth it. I gave up attempting to get anything done during the day and got used to L.M. not napping unless he was on my chest.
We rearranged our entire lives to revolve around L.M. and his quirks. We practically moved in with my ridiculously accommodating in-laws. They were one of the few reasons we kept our sanity. I cannot tell you how much better it can feel when someone else actually sees what you go through day after day. That one safe place where you don't ever have to defend yourself against assumptions that you are being dramatic or are a bad parent, because they have first hand knowledge that proves otherwise.
It is easy to look at a screaming child and assume that he or she is a spoiled brat. But if you took a minute to look closer, you might see a child that is so overcome by their environment that they can't do anything but scream. Instead of shooting them a dirty look, give them a sympathetic smile. Even if the kid really is just a brat, that one smile will do more than a million of your glares ever would.
Stop yourself the next time you want to tell an exasperated, overwhelmed new parent that they need to stop "coddling" their baby and then the baby will be forced to conform. Maybe that approach worked for your child, but for the kids who can't just "figure it out", it most likely will not. Unless you have been there, you have no idea what these parents are going through. Instead of offering up advice, offer to babysit for a night. Maybe they are unnecessary coddlers, they are still new parents, and could use a break.
I know three things for sure. First, L.M. was not just a brat; he was unhappy, uncomfortable and unprepared for his new world. Second, my little man was not a conformist then and he definitely isn't a conformist now. But you know what? He doesn't have to be. Third, he is mine and I wouldn't trade him for anything.
Tuesday, April 3, 2012
The Unknown
One of the first things I learned when starting this journey was that thinking your child has a developmental delay is very different from having someone tell you your child has a developmental delay. After our two year check up with E.T.'s pediatrician, I went into full blown research mode. What was wrong with my baby, what should I be doing to fix it, and what did it mean for his future, were just a few of my immediate concerns. Our pediatrician had referred us to a developmental pediatrician, but our appointment was over 6 months away.
Thankfully, I am blessed with two very helpful and patient cousin-in-laws who had some professional experience in the area. They listened to my concerns, replied to my nonstop texts about possible causes, and pointed me in the direction of help. They talked me through my Google addiction back into safer territories, and suggested I get in touch with Early Intervention. This was one of those situations that without supportive friends and family, the rough days would be unbearable. (I hope you both know who you are and how thankful I am for you. But being the incredibly modest people you are, you probably don't, so I will give a hint... One of you is E.T.'s God-mommy and the other is her super awesome sister.)
I followed their suggestions and arranged to have E.T. evaluated in our home. Within a couple weeks he had received his evaluation, and we were told that he was eligible for services. They said we would receive their report in 7 - 10 days. I have never waited so anxiously for mail (okay, that's probably not true... I am weird about the mail). When the report came, I read it with tears streaming down my face. I knew his speech was delayed, and I knew that I had sensed other issues, but reading what a stranger thinks about your child is maddening. I felt the urge to be the protective mama bear and stand up for my baby. What did they know? They think because they spent an hour with him that suddenly they "know" him or what he is capable of? I was so angry. How dare they judge my child.
Then I reread it. Everything they said was true. They had given voice to every one of my secret concerns. My baby was not a baby at all. He was actually a two year old toddler, but you would never know it from looking at him. They found that E.T. had at least a 50% delay in receptive and expressive language, fine motor skills and social / emotional skills. They actually noted that he seemed so unresponsive and uncommunicative that they felt he might be deaf. We were referred for hearing, speech and occupational therapy evaluations.
While waiting for our appointments, we did a hundred tests on his hearing. We could not decide one way or the other if he could hear us or not. My heart was breaking for my baby. Was this our fault? Did I do something wrong while I was pregnant, or when he fell down the stairs that time did he damage his brain? The endless stream of questions and feelings of guilt were a constant burden. I was getting migraines and having trouble sleeping. When the hearing appointment finally arrived, I was so relieved and yet terrified at the same time. I dreaded hearing that he was deaf, but I dreaded the unknown even more. When the audiologist told us that his hearing appeared fine, I think I was actually disappointed. E.T. having a hearing problem was something that I had resigned myself to. I had researched it and read about the very simple procedures, like tubes, that could repair it. Even the worst case scenarios did not seem like the end of the world. With one simple test, I was right back where I had started, Google.
In the following weeks, E.T. had an evaluation by a Speech Therapist who confirmed the findings of the Early Intervention evaluators. We were able to create a treatment plan and specific goals, but I was still searching for that underlying cause. When the Occupational Therapist came, she told us that E.T. had a sensory processing disorder. The symptoms he was exhibiting could all be explained by SPD, from appearing to have hearing loss, all the way to his being a picky eater. I felt like I finally had something to focus on.
Of course, this is when the other shoe dropped. I spoke with E.T.'s Early Intervention Support Coordinator about his evaluations, and how we wanted to proceed with therapy. While speaking with her, she said she was sending me information on evaluations that the Public School System offered for preschool children. I thought it seemed early to be thinking about preschool for E.T., but she clarified that the information was for L.M., my first handsome boy. She said that the evaluators had expressed concern to her about certain behaviors they had witnessed from the other child in the home when they were evaluating E.T.. She assured me that it was not uncommon for developmental issues, such as sensory processing disorders, to run in families. With all of our attention focused on E.T., we had completely overlooked what was staring us right in the face. L.M. was also struggling, and had been for as long as we could remember.
Had it not been for E.T.'s speech delay, we probably never would have sought treatment for either of them, because as far as we were concerned, that was how little boys behaved.
Thankfully, I am blessed with two very helpful and patient cousin-in-laws who had some professional experience in the area. They listened to my concerns, replied to my nonstop texts about possible causes, and pointed me in the direction of help. They talked me through my Google addiction back into safer territories, and suggested I get in touch with Early Intervention. This was one of those situations that without supportive friends and family, the rough days would be unbearable. (I hope you both know who you are and how thankful I am for you. But being the incredibly modest people you are, you probably don't, so I will give a hint... One of you is E.T.'s God-mommy and the other is her super awesome sister.)
I followed their suggestions and arranged to have E.T. evaluated in our home. Within a couple weeks he had received his evaluation, and we were told that he was eligible for services. They said we would receive their report in 7 - 10 days. I have never waited so anxiously for mail (okay, that's probably not true... I am weird about the mail). When the report came, I read it with tears streaming down my face. I knew his speech was delayed, and I knew that I had sensed other issues, but reading what a stranger thinks about your child is maddening. I felt the urge to be the protective mama bear and stand up for my baby. What did they know? They think because they spent an hour with him that suddenly they "know" him or what he is capable of? I was so angry. How dare they judge my child.
Then I reread it. Everything they said was true. They had given voice to every one of my secret concerns. My baby was not a baby at all. He was actually a two year old toddler, but you would never know it from looking at him. They found that E.T. had at least a 50% delay in receptive and expressive language, fine motor skills and social / emotional skills. They actually noted that he seemed so unresponsive and uncommunicative that they felt he might be deaf. We were referred for hearing, speech and occupational therapy evaluations.
While waiting for our appointments, we did a hundred tests on his hearing. We could not decide one way or the other if he could hear us or not. My heart was breaking for my baby. Was this our fault? Did I do something wrong while I was pregnant, or when he fell down the stairs that time did he damage his brain? The endless stream of questions and feelings of guilt were a constant burden. I was getting migraines and having trouble sleeping. When the hearing appointment finally arrived, I was so relieved and yet terrified at the same time. I dreaded hearing that he was deaf, but I dreaded the unknown even more. When the audiologist told us that his hearing appeared fine, I think I was actually disappointed. E.T. having a hearing problem was something that I had resigned myself to. I had researched it and read about the very simple procedures, like tubes, that could repair it. Even the worst case scenarios did not seem like the end of the world. With one simple test, I was right back where I had started, Google.
In the following weeks, E.T. had an evaluation by a Speech Therapist who confirmed the findings of the Early Intervention evaluators. We were able to create a treatment plan and specific goals, but I was still searching for that underlying cause. When the Occupational Therapist came, she told us that E.T. had a sensory processing disorder. The symptoms he was exhibiting could all be explained by SPD, from appearing to have hearing loss, all the way to his being a picky eater. I felt like I finally had something to focus on.
Of course, this is when the other shoe dropped. I spoke with E.T.'s Early Intervention Support Coordinator about his evaluations, and how we wanted to proceed with therapy. While speaking with her, she said she was sending me information on evaluations that the Public School System offered for preschool children. I thought it seemed early to be thinking about preschool for E.T., but she clarified that the information was for L.M., my first handsome boy. She said that the evaluators had expressed concern to her about certain behaviors they had witnessed from the other child in the home when they were evaluating E.T.. She assured me that it was not uncommon for developmental issues, such as sensory processing disorders, to run in families. With all of our attention focused on E.T., we had completely overlooked what was staring us right in the face. L.M. was also struggling, and had been for as long as we could remember.
Had it not been for E.T.'s speech delay, we probably never would have sought treatment for either of them, because as far as we were concerned, that was how little boys behaved.
E.T.'s Beginning
Although born second, E.T.'s story comes first. My handsome little man was not what you might call planned, although that did not make him any less wanted. I was slightly terrified because my first pregnancy had not been the easiest, my first delivery had been something I feel could have been in a horror film, and my first baby was not the happy, cooing, nothing but giggles child I had signed up for. However, that is L.M.'s story, so I will save it for later. This pregnancy went as expected until around 37 weeks when I came down with a severe sinus and upper respiratory infection, and developed pre-eclampsia. My routine weekly check up had turned into my delivery day.
Surprise number two came just after delivery, when my beautiful baby girl, Olivia (according to THREE ultrasounds), had some unexpected parts. My little girl was actually my handsome boy, and other than some minor redecorating and a closet overhaul, he fit in quite nicely. Our first night in the hospital, after the nurses had taken him to the nursery for the evening, a haggard nurse came back after a few hours with a very upset baby. She said that he was restless and keeping the other babies awake, and that she thought maybe he was hungry. I tried nursing him, but he just didn't seem interested. After what seemed like an endless line of nurses trying to coax him into latching on, they admitted defeat and suggested that we try giving him formula just to get him through the first night. I agreed, but unfortunately formula was not the answer. The doctor was paged, and E.T. was whisked away to the NICU.
He ended up being put on an NG Feeding Tube, and IV antibiotics (as a precaution in case he had my infection) and put in one of those terrifying baby bubbles. I wasn't allowed to visit him until I had received a full 36 hours of IV antibiotics so that I would not be a danger to him or any of the other NICU infants. I'm not sure that any diagnosis was ever made, but we were told that it is common for babies born before 40 weeks to have initial adjustment issues. Everything was fine at his follow up pediatrician appointments, so I never thought twice. E.T. had some minor colic and reflux issues, but otherwise he seemed to be developing right on schedule.
At his 12 month check up we expressed concern because he was not speaking yet. Not even trying really, just normal baby babble. We were told that second children, and especially boys, develop speech more slowly and he would catch up. We expressed the same concerns at 15 months, and were told the same thing. At 18 months, our new pediatrician said let's just wait and see. Finally, in Arizona, at his newest pediatrician's office for his 24 month check up someone finally suggested that we have him evaluated just to be safe. Instead of the 50 - 200 single words he should have had, he had roughly 5. He had zero ability to put two words together, he could not point to any parts of his body when asked and he could not follow simple commands.
This was in February 2012, which is when our journey into developmental delays began.
 |
| E.T. Born 1-28-10 |
He ended up being put on an NG Feeding Tube, and IV antibiotics (as a precaution in case he had my infection) and put in one of those terrifying baby bubbles. I wasn't allowed to visit him until I had received a full 36 hours of IV antibiotics so that I would not be a danger to him or any of the other NICU infants. I'm not sure that any diagnosis was ever made, but we were told that it is common for babies born before 40 weeks to have initial adjustment issues. Everything was fine at his follow up pediatrician appointments, so I never thought twice. E.T. had some minor colic and reflux issues, but otherwise he seemed to be developing right on schedule.
At his 12 month check up we expressed concern because he was not speaking yet. Not even trying really, just normal baby babble. We were told that second children, and especially boys, develop speech more slowly and he would catch up. We expressed the same concerns at 15 months, and were told the same thing. At 18 months, our new pediatrician said let's just wait and see. Finally, in Arizona, at his newest pediatrician's office for his 24 month check up someone finally suggested that we have him evaluated just to be safe. Instead of the 50 - 200 single words he should have had, he had roughly 5. He had zero ability to put two words together, he could not point to any parts of his body when asked and he could not follow simple commands.
This was in February 2012, which is when our journey into developmental delays began.
The Catalyst
Do you ever feel like things are just as they should be? Everything seems to
be falling into place, challenges have been overcome, sacrifices have been
made, and the time has come to sit back and just enjoy it. That is where we
were. I had a wonderful, supportive husband (and thankfully, still do), and two
handsome little boys. We had moved into a beautiful home in the suburbs northwest
of Chicago, my husband had a steady job with a steady income. Things were good.
Of course, that is when I should have known better. Because as soon as things
get good, WHAM!, life throws you a curve ball that you never could have
prepared for. In my case, it was tragedy, the fastest way to turn an entire
world upside down.
It was one of those middle of the night, immediate dread in the pit of your stomach, not a chance of it being anything but bad news phone calls. It took everything in my power to answer the phone, and before a word was spoken I was hyperventilating. My baby brother had been hit by a car. He was unconscious, in critical condition, and they needed his family to come to the hospital immediately. I asked a single question, "Is there time?". Her response told me everything I needed to know, "Be safe, but please hurry". We ended up making it to the hospital in time. Not really sure in time for what... to hear what had happened, to see the extent of his injuries, to sit helplessly by his bedside for days, to say goodbye.
Nothing can prepare you for the loss of a loved one. Especially one that is young, healthy and full of life with nothing but time ahead of them. There is a certain inability to comprehend how you can be talking, laughing and hugging someone, only to be holding their hand as they die a few hours later. I went through (and will still be going through for some time) all the stages you are supposed to when you are grieving, some for longer than others, others more than once. It was an emotional roller coaster of anger, disbelief, guilt, pain, loneliness, and depression. Somewhere along the way, I felt the need to act, to not let his death be an ending, but a catapult for a new beginning.
My sister and her family were living in Arizona, and not being with them made me feel like we were throwing away precious days and weeks, especially since our children were so close in age (4,3,2 & 1 this year!). Death has a way of making you see just how mortal you really are. It rips away any sense of comfort or safety you may feel. It makes you feel like your time is limited, and you’d better make the most of it. So, my husband got a new job, we packed up all our belongings (after just nine months in our new home), and headed to Arizona. I firmly believe that beauty is good for the soul. The closer we got, the lighter the weight on my chest became. Waking up to incredible mountains on this amazing landscape does wonders for your mood. It really does make it feel like vacation every day. It felt good to feel some peace.
We moved into our new home, hopefully our last for quite some time. We are slowly getting back to that place where we were before, that sneaky, elusive place that we like to call “good”. Of course, I will never be the same. Our family will never be the same. We lost an important, irreplaceable piece of our already slightly distorted puzzle. We have all become different people, changing to accommodate our tragedy in our own ways. Each of our pieces has grown to include a part of the piece that was lost. Yet somehow, that is how we will manage to fit back together again. We no longer create the same picture when put together, but this new picture looks like it might just be okay, too.
It was one of those middle of the night, immediate dread in the pit of your stomach, not a chance of it being anything but bad news phone calls. It took everything in my power to answer the phone, and before a word was spoken I was hyperventilating. My baby brother had been hit by a car. He was unconscious, in critical condition, and they needed his family to come to the hospital immediately. I asked a single question, "Is there time?". Her response told me everything I needed to know, "Be safe, but please hurry". We ended up making it to the hospital in time. Not really sure in time for what... to hear what had happened, to see the extent of his injuries, to sit helplessly by his bedside for days, to say goodbye.
Nothing can prepare you for the loss of a loved one. Especially one that is young, healthy and full of life with nothing but time ahead of them. There is a certain inability to comprehend how you can be talking, laughing and hugging someone, only to be holding their hand as they die a few hours later. I went through (and will still be going through for some time) all the stages you are supposed to when you are grieving, some for longer than others, others more than once. It was an emotional roller coaster of anger, disbelief, guilt, pain, loneliness, and depression. Somewhere along the way, I felt the need to act, to not let his death be an ending, but a catapult for a new beginning.
My sister and her family were living in Arizona, and not being with them made me feel like we were throwing away precious days and weeks, especially since our children were so close in age (4,3,2 & 1 this year!). Death has a way of making you see just how mortal you really are. It rips away any sense of comfort or safety you may feel. It makes you feel like your time is limited, and you’d better make the most of it. So, my husband got a new job, we packed up all our belongings (after just nine months in our new home), and headed to Arizona. I firmly believe that beauty is good for the soul. The closer we got, the lighter the weight on my chest became. Waking up to incredible mountains on this amazing landscape does wonders for your mood. It really does make it feel like vacation every day. It felt good to feel some peace.
We moved into our new home, hopefully our last for quite some time. We are slowly getting back to that place where we were before, that sneaky, elusive place that we like to call “good”. Of course, I will never be the same. Our family will never be the same. We lost an important, irreplaceable piece of our already slightly distorted puzzle. We have all become different people, changing to accommodate our tragedy in our own ways. Each of our pieces has grown to include a part of the piece that was lost. Yet somehow, that is how we will manage to fit back together again. We no longer create the same picture when put together, but this new picture looks like it might just be okay, too.
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| In Loving Memory TRP 7/10/84-6/22/11 |
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