Two other things happened to brighten my day yesterday - I won a giveaway. I won a lovely 99% pure silver necklace from Silver Mermaid Jewelry. This is from the fundraiser for the Leukemia and Lymphoma Society that I told you about last week. The one for hosted by Who Knew Reviews. Lani was able to raise $772. She's still short of her total fundraising goal, so if it moves you, please go visit her and donate. :-) On a separate but related note, anybody see emails circulating talking about the benefits of soursop in fighting cancer? Just got an email yesterday but have never heard anything about this. Find this one very interesting, particularly as there are soursops from the neighbours' tree just getting eaten by the birds right now. :-)
The other thing that helped me is an award that the girl with the flour in her hair gave to me. Thanks hon. You are so sweet. Check it out.
That's bound to make you feel better isn't it. :-) I am so grateful.
Now for the update. So I was surprised at how nervous I was on the eve of taking him to the doctor. I didn't expect it. I'm rather practical when it comes to these things. Usually. So I decided to just email the post to the doctor so that he could see for himself in case I messed up the words and forgot (highly likely) all the salient points. Well he did read it, and he chatted with me one on one before we brought boy child in, and I think I was able to give a good sense of what my concerns were. Physically my boy checked out fine, maybe even great. But as I explained to his doctor, the concerns I have are less evident in a one-off situation and setting like this unless you provoke it. It's more when he has to process his emotions, or a change of emotions. Or when he has to learn a new concept. Still the doctor did agree that there seems to be something that warrants further evaluation. And I was happy to hear that his side of the conversation was tending toward putting me in touch with someone who could assess and teach me the skills to help him. I am not looking for a label out of this.
I am not looking for - your child is autistic, or obsessive-compulsive, or any of the million and one labels. I am looking for someone to understand what he's facing and armed with experience and understanding what the underlying causes could be, to help us to overcome those challenges. That's it. No drugs, no labels... I know it's all workable. I just need help, because I have exhausted my experience.
Speaking of which. I have to be very honest, I'm not sure how this post is turning out, because as I'm writing it I'm a little numb. I was so disappointed and angry last night, again. When it comes to this situation, I just feel like I need to keep my mouth shut and not speak to my very dear beloved family. They mean the world and moon and stars to me. I adore them. But I feel as though one or two are so dismissive of my concerns.
One of my big concerns is that he - in his words - just feels like crying, and he doesn't know why. And it's not every day, but it was twice in the last two weeks, and then yesterday again he told me he felt the same way. Yall need to understand how huge this is. For this child to come find me to talk about his feelings is ginormous. This is the child who if he gets mad or sad or whatever, will go to his room, lie in his bed until... I'm not really sure what goes on... but he will eventually, once he's ok, return to join the rest of the family. And if you venture in at those times to ask what's wrong, he won't talk. If I ask I might get a nod if I ask the right question, or I may eventually be able to coax some clues out of him, and we take it from there.
Anyway, so when I am met with - oh he's just sad, that happens. Hellooooo... I have 3. Do I not know what just sad looks like? I know it's with the best of intentions but it feels so belittling... as if I'm imagining what I'm seeing. Or worse as though my wanting to do something about it is irrational. You know what. If I just followed what other people said, he'd still be sitting alone in a corner of a room filled with other kids interacting and thinking that's what play is. It took work to get him where he is. Work that no-one else but my husband sees. The fact that you don't see it is the testament to its success.That's bound to make you feel better isn't it. :-) I am so grateful.
Now for the update. So I was surprised at how nervous I was on the eve of taking him to the doctor. I didn't expect it. I'm rather practical when it comes to these things. Usually. So I decided to just email the post to the doctor so that he could see for himself in case I messed up the words and forgot (highly likely) all the salient points. Well he did read it, and he chatted with me one on one before we brought boy child in, and I think I was able to give a good sense of what my concerns were. Physically my boy checked out fine, maybe even great. But as I explained to his doctor, the concerns I have are less evident in a one-off situation and setting like this unless you provoke it. It's more when he has to process his emotions, or a change of emotions. Or when he has to learn a new concept. Still the doctor did agree that there seems to be something that warrants further evaluation. And I was happy to hear that his side of the conversation was tending toward putting me in touch with someone who could assess and teach me the skills to help him. I am not looking for a label out of this.
I am not looking for - your child is autistic, or obsessive-compulsive, or any of the million and one labels. I am looking for someone to understand what he's facing and armed with experience and understanding what the underlying causes could be, to help us to overcome those challenges. That's it. No drugs, no labels... I know it's all workable. I just need help, because I have exhausted my experience.
Speaking of which. I have to be very honest, I'm not sure how this post is turning out, because as I'm writing it I'm a little numb. I was so disappointed and angry last night, again. When it comes to this situation, I just feel like I need to keep my mouth shut and not speak to my very dear beloved family. They mean the world and moon and stars to me. I adore them. But I feel as though one or two are so dismissive of my concerns.
One of my big concerns is that he - in his words - just feels like crying, and he doesn't know why. And it's not every day, but it was twice in the last two weeks, and then yesterday again he told me he felt the same way. Yall need to understand how huge this is. For this child to come find me to talk about his feelings is ginormous. This is the child who if he gets mad or sad or whatever, will go to his room, lie in his bed until... I'm not really sure what goes on... but he will eventually, once he's ok, return to join the rest of the family. And if you venture in at those times to ask what's wrong, he won't talk. If I ask I might get a nod if I ask the right question, or I may eventually be able to coax some clues out of him, and we take it from there.
The other thing I heard from another family member was that "I hope you have money. You could go through all this, and at the end he could be totally normal." Well, a - that's what I'm hoping for, not some badge of handicap that gives "special" privileges. And, b - no I don't have the money. And that might be a stumbling block that will delay all this. But this is going to happen. Isn't it worth it? What's the alternative? Settle for whatever happens? Isn't it my job to protect the interests of my children above all else?
Please forgive the ranting, but I really just needed to vent. I'm okay now. Really. I am.
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11 comments:
Big hugs to a Wonderful mom who is being proactive in keeping her kids happy and healthy!
Family always has the best intentions, but sometimes they can say the dumbest things!
I can't believe that your doctor isn't refering you to your area's program for special needs children. You shouldn't have to worry about money to pay for any therapies he needs. There SHOULD be something funded by your own tax dollars. This varies depending on where you live, but you should have something state or country funded. Early intervention is so important, so please don't waste too much time on one doctor. The truth is - you are incredibly knowledgeable about your son's challenges and that's really half the battle. You'd be surprised how many people will just chalk these things up to quirkiness.
I'd also like to say that you have a very inspiring story. That kid has made amazing progress without any professional help. And that is a true testement to your parenting. It's also obvious that he has an unlimited amount of potential. What a little hero. (You too by the way)
Oh please don't be mad at my family. They are truly the sweetest most loving and supportive and I know that where they're coming from is a doubt about how expensive this is going to be. (I just got my first call from the psychologist - it IS going to be expensive.) I understand that, and I truthfully don't know yet how this is going to happen. But I can tell you that it will.
For me it cannot be an option. Why should my boy have to settle for anything less because he wasn't born into a family with more money? Here's my acid test. If it was free, would you do anything about it. If the answer is yes, and there's a need, that's all that matters.
I will write more later on this.
Thanks Kate too. I really wish there was some kind of service that could help me with this. I have faith that this is going to work out fine. And I know that he is going to be fine.
Thanks for your words of support ladies. :-)
I feel so bad for what you're going through and so sad for your son. It's pretty wonderful that he's expressing himself with you.....and that is so key, to me.
I hope you can get to the bottom of this soon so that your son is feeling better.
My sister went through some of this with her son. Years of it, actually. And once they got a diagnosis (which in their case was Aspergers) eerything fell into place and they were able to understand the why's and the feelings.
I hope you get that diagnosis soon....and I'm glad you have "us" to vent to!
Hugs
xoxo
You are on your way to getting the help you need. You are the expert on your child, not your "well meaning" family members. They have no idea what you go through on a day to day basis and they never will. Stay strong.
Will pray that all turns out well. Don't worry what others say(past,now or future). Trust your instincts, they appear to be quite super.
Hug your child for me.
BM
I'm going to agree with Kate. There has to be a program to help.....I will help you find one if you need me too. I'm good at researching....most anything.
You are doing an amazing job and I'm so proud of you. Don't get down on yourself or the situation. You can work through this.
HUGS!
I stopped by from SITS. I read some of your posts and it sounds like you're doing a great job. I hope you can get the answers you need.
You know what...you know your child better than anyone. We went through something similar a couple years ago with one of our boys. He is so very smart, yet had anxiety problems as well as a few other things going on. I had a few family members tell me everything was fine with him and I was wasting my time and money. We were driving an hour and a half to see the best specialist. No, we couldn't afford it, but when it comes to our children we don't settle for anything but the best. If I had to take on 3 jobs just so that my children could get the care they need I would, as I know you would. You are a great mother and it shows! If you ever need to talk I'm here. Best of luck! I hope you get everything figured out.
You feel free to rant as much as you want to. It helps to get the emotions and feelings out and we're here to listen. I hope that the doctor will help you find exactly what you and your child need. :)
So glad to hear ...
sometimes no one knows.. but you...
what needs to be done.
xoxox supah
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