Last week was my emotionally charged post, written after learning that Caleb may have autism. One week later, we are settling in. We are calmer, and trying to think more clearly.
We took Caleb to get an EEG this week. That was the first step, apparently. At this time, we have no further appointment, and we didn't even meet the neurologist yet. We have to wait for the results of the EEG before anything else is done.
Caleb already has a speech therapist who comes to the house once a week, but we immediately asked to have an occupational therapist as well, and she deals with autism specifically. Brian happened to have a snow day the day she came, so we both bombarded her with questions, and she was a huge help- a tremendous wealth of information. She plainly admitted she is not a doctor and cannot diagnose anything, but she questioned whether or not Caleb had autism. She said he may just have a sensory disorder... but again, no one is professing anything here. She was incredibly impressed with how Caleb actively engaged her, a total stranger, and how social he was with her.
Caleb has calmed down this week, thank goodness. The dreadful crying at bedtime has stopped. I changed his sheet, and I think that may have helped. He had a waterproof sheet on top of his regular sheet, and the waterproof sheet would move a bit and would not align just so to satisfy Caleb's needs. I said, "Forget this!" I moved the waterproof sheet underneath his regular sheet, so there are no more issues and Caleb is no longer upset. (Meanwhile, that sheet had been in place for well over two years, but according to our occupational therapist, things that were fine last week can become a problem AT ANY TIME.)
There are still new issues we are dealing with, and since he sort of "snapped" for lack of a better word, Brian and I have been finding ourselves walking on tiptoe, trying so hard not to make him MAD. We are struggling to find that balance. Obviously, in spite of any issues he has, life still goes on. There are rules to follow, and no matter what, he is not in charge. Yet, we want to be sensitive to his needs, whatever they are. We need lots of prayer and wisdom and we try to work our way through these issues.
Today, Caleb's speech therapist (whom I have gotten friendly with over the past several months), after discussing Caleb at length, looked at me and said, "But how are YOU?" It was almost weird to even answer such a question. As a mom, you just go on and on. You answer the needs and the cries as they come. Taking time for this blog is a challenge.
I am okay. I'm not brimming over with joy, I'll be honest. Life is hard right now. Silas is getting at the stage where he is a handful. (Ask my dad; he'll tell you that he is!) He is still up at night, and sometimes cries way more than necessary, and it is hard. I am trying everything to get him to sleep at night, including spending extra money on materials and sleep plans... I'm not yet sure if they will be a waste of money or not.
Mostly I feel drained. Yet, I know this is a season, and seasons do not last forever. It is funny, because before Caleb's regression, we were all sick. Fevers and the whole nine yards. Our pastor emailed us and said he was praying for us and reminded us that it is always darkest before the dawn. Then, just a few days later, our doctor was referring Caleb to a pediatric neurologist to determine if he has autism.
We have been dealing with a lot around here. This is not to say we want you to feel sorry for us. Life is full of pain for everyone. No one escapes. Yet, what matters is that we keep our eyes on Him. Regardless of whatever happens down here, He is still on the throne. Always and forever, I bow my knee to Him. He will one day wipe every tear away, even those that were unshed. I have that hope, because it is His promise.
Thank you for your prayers for us. They mean everything.
Friday, February 26, 2016
Friday, February 19, 2016
Broken Heart
When my world spins out of control, or collapses right in front of my eyes, of course I cry out to God in prayer. But the other thing I do? I write.
I have known for some time that my postpartum depression is very much linked to the behavior of my oldest. Caleb has been defiant, obstinate, and violent for quite some time. We were slowly realizing something was wrong with him... but we didn't know what. Our "training" never seemed to work. Good behavior was elusive. And as I had to deal with him day after day, my own spirits were plummeting.
After a few days of unusual regression, we brought Caleb to the doctor. While he has not been officially diagnosed (we still need to bring him to the neurologist), all signs are pointing to autism.
I WEPT right there in the room. All my worst fears came rushing forth, and at the same time, everything made sense. So THIS was why we were struggling SO MUCH with him. Why all of our training seemed to get us no where but FRUSTRATED.
I could have handled the news better one week ago. But since Sunday night, I don't know how to explain it, Caleb has regressed, and he is no longer the same boy he was last week. We have the same problems we had before, but more. He's been going to bed at night screaming, and banging his head in the crib. He's been waking in the middle of the night, screaming, and banging his head. During the day, if one thing goes wrong in his world, he has been screaming, inconsolable. He keeps requesting things that Brian and I can't understand, things he hasn't requested before, and he is mad when we don't do what he wants. Not just mad, but fall on the floor, screaming in hopeless heap, unable to move on and play with another toy. He continually slaps himself in the head.
Folks, I don't know how to parent an autistic child. I have no idea. I want to head for the hills and hide out, away from it all. But I can't. I am his mommy.
Brian and I need you on your knees for us, like never before. We have a long road ahead of us. We are going to look into diet changes (ie: gluten free) for Caleb. Down the road, perhaps dairy and sugar free, too. We were reading that some of those things can be of help.
My heart has been hurting for a while now, always wondering where in the world my sweet boy was. Now I know. He's locked up inside himself, trapped, unable to get out.
If you have been reading this blog, you know we can't take much more. I didn't think I could take any more before this. We are so isolated here in PA, with no family to love on us or help us in our times of weakness, like this one. I have a baby to take care of, and now an autistic child. I don't know what I'm doing. I don't even know how to go on.
I called my mother yesterday, as I always do, when I first heard the news. She wept with me over the phone. And in some strange way, it was the most comforting thing in the world.
So, please, weep with me. I promise I won't push you away.
And please pray for our boy.
I have known for some time that my postpartum depression is very much linked to the behavior of my oldest. Caleb has been defiant, obstinate, and violent for quite some time. We were slowly realizing something was wrong with him... but we didn't know what. Our "training" never seemed to work. Good behavior was elusive. And as I had to deal with him day after day, my own spirits were plummeting.
After a few days of unusual regression, we brought Caleb to the doctor. While he has not been officially diagnosed (we still need to bring him to the neurologist), all signs are pointing to autism.
I WEPT right there in the room. All my worst fears came rushing forth, and at the same time, everything made sense. So THIS was why we were struggling SO MUCH with him. Why all of our training seemed to get us no where but FRUSTRATED.
I could have handled the news better one week ago. But since Sunday night, I don't know how to explain it, Caleb has regressed, and he is no longer the same boy he was last week. We have the same problems we had before, but more. He's been going to bed at night screaming, and banging his head in the crib. He's been waking in the middle of the night, screaming, and banging his head. During the day, if one thing goes wrong in his world, he has been screaming, inconsolable. He keeps requesting things that Brian and I can't understand, things he hasn't requested before, and he is mad when we don't do what he wants. Not just mad, but fall on the floor, screaming in hopeless heap, unable to move on and play with another toy. He continually slaps himself in the head.
Folks, I don't know how to parent an autistic child. I have no idea. I want to head for the hills and hide out, away from it all. But I can't. I am his mommy.
Brian and I need you on your knees for us, like never before. We have a long road ahead of us. We are going to look into diet changes (ie: gluten free) for Caleb. Down the road, perhaps dairy and sugar free, too. We were reading that some of those things can be of help.
My heart has been hurting for a while now, always wondering where in the world my sweet boy was. Now I know. He's locked up inside himself, trapped, unable to get out.
If you have been reading this blog, you know we can't take much more. I didn't think I could take any more before this. We are so isolated here in PA, with no family to love on us or help us in our times of weakness, like this one. I have a baby to take care of, and now an autistic child. I don't know what I'm doing. I don't even know how to go on.
I called my mother yesterday, as I always do, when I first heard the news. She wept with me over the phone. And in some strange way, it was the most comforting thing in the world.
So, please, weep with me. I promise I won't push you away.
And please pray for our boy.
Wednesday, February 10, 2016
Silas: Six Months
Dear Silas,
Six months! My darling boy, I'm not sure how in the world we've arrived at half a year with you already, but here we are! The time with you has been so precious, and it is going far too quickly.
You are blossoming so much! Your little personality is coming out more and more, and you are so full of life! You love to make contact. You might be lying contentedly on the floor, but when I come over and rub my head into your belly, the giggles begin! You seem to love all attempts at physical affection, and you reach out to me all the time. Of course, it is normal for babies to reach out and grab, but you seem to delight in touching my face and leaving your hand there. I love it!
Last week, you began sleeping on your belly, though so far it only happens at nap time. It scared me, because you were completely face down, and I kept creeping in to make sure you were still breathing! Since then, you have been taking almost all of your naps on your tummy!
You are rolling around like crazy now, and at times you are trying to get your knees underneath you. Perhaps we will have an early crawler? Only time will tell!
I think you are getting a tooth, and if so, it would explain the bouts of very loud fussiness we've been enduring the past couple of days. Teething definitely is one of those things that can be as hard on the parent as the child!
It's been interesting to watch the changes in you. A few months ago, when I started putting together a nap time/bedtime routine, you could barely sit through a reading of one story. Now, you calmly let me read several books to you, and you rarely fuss. I have a wonderful time with you, holding you cheek-to-cheek, while I read books, sing, and recite other stories from memory.
Caleb still makes you giggle, but I sometimes get nervous, because he can be rather rough with you. However, I look forward to watching you grow and play with Caleb more and more. I tell the two of you all the time that you have a built-in best friend in each other. No searching for a best man to stand beside you at the altar one day. You have each other, and that is a wonderful gift.
Your first Valentine's Day is just around the corner, and it is my first with three men! I can remember when I didn't even have one! My cup runneth over!
Silas, I love you. I love watching you grow, but I wish you weren't doing it so fast! I want to enjoy you just as you are now- forever.
Love,
Your mama
Six months! My darling boy, I'm not sure how in the world we've arrived at half a year with you already, but here we are! The time with you has been so precious, and it is going far too quickly.
You are blossoming so much! Your little personality is coming out more and more, and you are so full of life! You love to make contact. You might be lying contentedly on the floor, but when I come over and rub my head into your belly, the giggles begin! You seem to love all attempts at physical affection, and you reach out to me all the time. Of course, it is normal for babies to reach out and grab, but you seem to delight in touching my face and leaving your hand there. I love it!
Last week, you began sleeping on your belly, though so far it only happens at nap time. It scared me, because you were completely face down, and I kept creeping in to make sure you were still breathing! Since then, you have been taking almost all of your naps on your tummy!
You are rolling around like crazy now, and at times you are trying to get your knees underneath you. Perhaps we will have an early crawler? Only time will tell!
I think you are getting a tooth, and if so, it would explain the bouts of very loud fussiness we've been enduring the past couple of days. Teething definitely is one of those things that can be as hard on the parent as the child!
It's been interesting to watch the changes in you. A few months ago, when I started putting together a nap time/bedtime routine, you could barely sit through a reading of one story. Now, you calmly let me read several books to you, and you rarely fuss. I have a wonderful time with you, holding you cheek-to-cheek, while I read books, sing, and recite other stories from memory.
Caleb still makes you giggle, but I sometimes get nervous, because he can be rather rough with you. However, I look forward to watching you grow and play with Caleb more and more. I tell the two of you all the time that you have a built-in best friend in each other. No searching for a best man to stand beside you at the altar one day. You have each other, and that is a wonderful gift.
Your first Valentine's Day is just around the corner, and it is my first with three men! I can remember when I didn't even have one! My cup runneth over!
Silas, I love you. I love watching you grow, but I wish you weren't doing it so fast! I want to enjoy you just as you are now- forever.
Love,
Your mama
Tuesday, February 9, 2016
Bumpy Road
When we were dating, Brian took me horseback riding. It was basically a fulfillment of a lifelong dream. I had always wanted to try it, but never had the opportunity.
Well, it was a lot harder than I thought! I opted to wear a helmet, because I didn't trust myself. We were put with a coach of sorts who guided us as we cantered through the woods, with lots of inclines, descents, rocks, and all manner of difficulties (at least, for me, the beginner). I don't remember if it was Brian's horse or the coach's, but one of them kept biting my more gentle horse, and I was basically scared to death. I kept thinking, "Why can't we just let the horses go on a nice leisurely stroll on flat ground so I can get used to all of this?"
Needless to say, I was glad when my two feet met solid ground again.
Life is like that. More often than not, we must walk the bumpy, difficult road, feeling like the inexperienced traveler, longing instead for a smooth, easy path. And certainly nothing to bite us in the behind when we are already down!
For me right now, the path I am on is a bumpy one. I won't sugar coat it or make excuses or pretend otherwise. I've been through hard times in my life before, and this one ranks up there as one of the hardest.
I had a second seizure almost three weeks ago. After my first one in September, we assumed it was a postpartum thing, and we were not overly concerned. When the second came and went, we realized something more was happening inside of me.
The neurologist quickly diagnosed me with epilepsy, for the simple reason that I had seizure #2. His solution was to immediately put me on medication with a warning to wean Silas, who could not have the medication via breast milk. Brian and I left the office extremely discouraged, knowing that we were NOT going to wean Silas from the wonderful benefits of nursing this early.
My sister encouraged me to run, not walk, to a doctor not too far north from my former stomping grounds. He is all homeopathic, and works on figuring out what is wrong with the body while bringing the whole body back into balance. Some people might find it just plain weird or wacky, but he has cured leukemia and other terrible things. One girl came to him who was told she needed her leg amputated... needless to say, she still has her leg. My sister went there and he has cured her of Lyme's Disease.
So, we went. My dad was nice enough to come with us, since the appointment itself takes about two hours, and I knew Brian would need an extra hand with the boys. The doctor used his computer to do a body scan and found that my nervous system was in terrible shape, as well as my ovaries, and my hormones. (Hello, postpartum depression.)
I walked away with several homeopathic treatments, and a water treatment to detox my body. I will need to go back again next month, but it feels so good to be on a path to better health. Lord willing, I can kiss these seizures goodbye forever.
This treatment isn't cheap, and I am so grateful to have a husband who cares so much for me, and he didn't even think twice about spending the money. Normally, I would never agree to spend this on myself, but, since we are dealing with seizures here, I really felt like I had no choice. I am home alone with these boys every day, so getting treatment is absolutely vital.
I am also struggling with sleep deprivation. My darling boy still is not sleeping through the night, and, no, I don't want to hear your comments. "He STILL isn't sleeping through the night?!?!" "You just gotta let him cry-it-out!" "He should be sleeping through the night by now!!" Believe me, I have already heard it all.
I am just about desperate to get some real sleep. DESPERATE. My lack of sleep is affecting my whole life. My attitude for starters. I am exhausted, worn out, depleted, and just plain empty. I have tried cry-it-out, repeatedly. Let me tell you, this kid can endure. Last night, he started at about 10:18, and went until 11:55. Meanwhile, I was right next to him in my bed (this is why he is in our room and not with Caleb), not sleeping as he was screaming in his pack 'n play. I tried, folks. I really did. I was falling asleep on the couch in the living room before bed, totally exhausted, only to head to my room, and the crying began. I lasted as long as I could. I just needed sleep, so I finally took him and nursed him. Did I win the battle? No, I did not. But when you are exhausted in the middle of the night and you just want to sleep... enough said.
So I nursed him, put him down a little after midnight, and then he was up again at 2:41. Then he was up for the day at something like 5.
I truly have no idea what else to do. Cry-it-out worked with Caleb, fairly easily and quickly. Not so with Silas. Even when he does successfully cry himself back to sleep, he is up again in an hour. That happened the night before last.
This is the hard, bumpy road right now. It is tough, folks. I won't lie. In the middle of the night, as I cry out to God, begging Him to help my little one get back to sleep, and He doesn't, even He feels so far away.
When I went home this past weekend, my parents welcomed us with open arms. What's more, is they took care of me. My dad is 100% Italian, and that means that no one goes hungry, ever, on his watch. My mom sort of picked up this concept, as her mother-in-law taught her how to cook authentic Italian meals. It felt so good to have other people take care of me for a change, instead of me take care of everyone else. My mom made homemade sauce, meatballs, sausage, and pasta. My dad even made sandwiches for our car ride back to PA, and bought bagels for us at my favorite bagel place to take back with us, just because. My parents are by no means rolling in money, in fact, the total opposite, yet they still treat us to good quality meals. Though I still was up in the middle of the night there, too, I came away feeling a bit refreshed due to the tender, loving care I received.
I hope I have not wearied you while reading this. Who else does this, opens up about all their issues, online, no less? (Not like many people read this blog.) I have nothing to hide. I'm not worried what people think. It is a tough road, and I do have the hope that it won't last forever.
Thank you for reading. Your prayers are appreciated a thousand times over.
Well, it was a lot harder than I thought! I opted to wear a helmet, because I didn't trust myself. We were put with a coach of sorts who guided us as we cantered through the woods, with lots of inclines, descents, rocks, and all manner of difficulties (at least, for me, the beginner). I don't remember if it was Brian's horse or the coach's, but one of them kept biting my more gentle horse, and I was basically scared to death. I kept thinking, "Why can't we just let the horses go on a nice leisurely stroll on flat ground so I can get used to all of this?"
Needless to say, I was glad when my two feet met solid ground again.
Life is like that. More often than not, we must walk the bumpy, difficult road, feeling like the inexperienced traveler, longing instead for a smooth, easy path. And certainly nothing to bite us in the behind when we are already down!
For me right now, the path I am on is a bumpy one. I won't sugar coat it or make excuses or pretend otherwise. I've been through hard times in my life before, and this one ranks up there as one of the hardest.
I had a second seizure almost three weeks ago. After my first one in September, we assumed it was a postpartum thing, and we were not overly concerned. When the second came and went, we realized something more was happening inside of me.
The neurologist quickly diagnosed me with epilepsy, for the simple reason that I had seizure #2. His solution was to immediately put me on medication with a warning to wean Silas, who could not have the medication via breast milk. Brian and I left the office extremely discouraged, knowing that we were NOT going to wean Silas from the wonderful benefits of nursing this early.
My sister encouraged me to run, not walk, to a doctor not too far north from my former stomping grounds. He is all homeopathic, and works on figuring out what is wrong with the body while bringing the whole body back into balance. Some people might find it just plain weird or wacky, but he has cured leukemia and other terrible things. One girl came to him who was told she needed her leg amputated... needless to say, she still has her leg. My sister went there and he has cured her of Lyme's Disease.
So, we went. My dad was nice enough to come with us, since the appointment itself takes about two hours, and I knew Brian would need an extra hand with the boys. The doctor used his computer to do a body scan and found that my nervous system was in terrible shape, as well as my ovaries, and my hormones. (Hello, postpartum depression.)
I walked away with several homeopathic treatments, and a water treatment to detox my body. I will need to go back again next month, but it feels so good to be on a path to better health. Lord willing, I can kiss these seizures goodbye forever.
This treatment isn't cheap, and I am so grateful to have a husband who cares so much for me, and he didn't even think twice about spending the money. Normally, I would never agree to spend this on myself, but, since we are dealing with seizures here, I really felt like I had no choice. I am home alone with these boys every day, so getting treatment is absolutely vital.
I am also struggling with sleep deprivation. My darling boy still is not sleeping through the night, and, no, I don't want to hear your comments. "He STILL isn't sleeping through the night?!?!" "You just gotta let him cry-it-out!" "He should be sleeping through the night by now!!" Believe me, I have already heard it all.
I am just about desperate to get some real sleep. DESPERATE. My lack of sleep is affecting my whole life. My attitude for starters. I am exhausted, worn out, depleted, and just plain empty. I have tried cry-it-out, repeatedly. Let me tell you, this kid can endure. Last night, he started at about 10:18, and went until 11:55. Meanwhile, I was right next to him in my bed (this is why he is in our room and not with Caleb), not sleeping as he was screaming in his pack 'n play. I tried, folks. I really did. I was falling asleep on the couch in the living room before bed, totally exhausted, only to head to my room, and the crying began. I lasted as long as I could. I just needed sleep, so I finally took him and nursed him. Did I win the battle? No, I did not. But when you are exhausted in the middle of the night and you just want to sleep... enough said.
So I nursed him, put him down a little after midnight, and then he was up again at 2:41. Then he was up for the day at something like 5.
I truly have no idea what else to do. Cry-it-out worked with Caleb, fairly easily and quickly. Not so with Silas. Even when he does successfully cry himself back to sleep, he is up again in an hour. That happened the night before last.
This is the hard, bumpy road right now. It is tough, folks. I won't lie. In the middle of the night, as I cry out to God, begging Him to help my little one get back to sleep, and He doesn't, even He feels so far away.
When I went home this past weekend, my parents welcomed us with open arms. What's more, is they took care of me. My dad is 100% Italian, and that means that no one goes hungry, ever, on his watch. My mom sort of picked up this concept, as her mother-in-law taught her how to cook authentic Italian meals. It felt so good to have other people take care of me for a change, instead of me take care of everyone else. My mom made homemade sauce, meatballs, sausage, and pasta. My dad even made sandwiches for our car ride back to PA, and bought bagels for us at my favorite bagel place to take back with us, just because. My parents are by no means rolling in money, in fact, the total opposite, yet they still treat us to good quality meals. Though I still was up in the middle of the night there, too, I came away feeling a bit refreshed due to the tender, loving care I received.
I hope I have not wearied you while reading this. Who else does this, opens up about all their issues, online, no less? (Not like many people read this blog.) I have nothing to hide. I'm not worried what people think. It is a tough road, and I do have the hope that it won't last forever.
Thank you for reading. Your prayers are appreciated a thousand times over.
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