When It’s On Paper
First off, I want to thank Eric for inviting me to post on Black Box Warnings to talk about my son, Doorbell (as he is affectionately called). I was reading a very poignant post from OCDTalk called OCD and Watchful Waiting and made a comment to which Eric then asked if I would like to make a contribution to his blog. And of course I said “yes”…you don’t say “no” to Eric, else he’ll unleash Le Clown upon you … and well, you don’t want to know the rest…
In all seriousness, I am grateful to be given an opportunity to write about all the feelings that have recently surfaced since having a neuropsych evaluation for my 10 year old son.
My son is pretty freakin’ awesome and endured more in the first year of his life than I could ever cope with. Below is an excerpt from a post I have called Smart Boy which gives you an idea of how resilient babies are…
December 22, 2002
- Death
- 14 minutes – no oxygen
- Resuscitation
- 75% loss of life blood
- 60+ blood product transfusions
- Convulsions
- Morphine withdrawals
- Intubation
- Massive hematoma
- Internal bleeding
- Baptism
- Last Rites
- Near kidney failure
- Massive edema
- Bleeding out of every orifice
- Gangrene in the lower intestine
- Chance of survival – almost nil
Forty-eight hours have elapsed.
It’s Christmas Eve 11:30 PM. Doctors knocking on my hospital room door. Two doctors are telling me that my baby is bleeding out of every orifice with massive edema and internal bleeding. They don’t know why – they need to operate immediately else he won’t survive. They tell me in all likelihood he will die regardless.
It’s Christmas Eve – my son is going to die. I’ve not even held him – I witnessed his Baptism and Last Rites. I may never hold him. I’m not religious but I’m desperately praying that he doesn’t die on Christmas.
After the surgery, Dr. G comes to my room. He gently smiles and touches my arm asking how I’m doing. He tells us Doorbell has survived the surgery much to everyone’s surprise. He has gangrene in his intestines because he went so long without oxygen after his birth that his all his major organs shut down and so far part of his intestine has died and he has a massive hematoma in his stomach that is bleeding – they don’t know how to stop it. They have clamped off his intestine in a couple of places but there are more areas that look suspicious. At this point it’s just a minute-by-minute watch. He tells us if Doorbell survives two more days he’ll have another surgery. He tells us the truth – his survival rate is very low; don’t get your hopes up. If he survives, he may have massive brain damage.
Two days later; Doorbell is still alive. He also pulls through the 2nd surgery with Dr. G. He has several internal & external stomas. He is very ill. He is still bleeding internally and requires many transfusions. Dr. G tells us he will be in the Neonatal ICU for a while. He may not survive – don’t get your hopes up. He upgraded Doorbell to hour-by-hour survival.
101 days later, Doorbell is discharged with a couple more surgeries under his belt. Dr. G has informed us we can get our hopes up.
24 hours old to 9 years old – pretty amazing!
Throughout Doorbell’s hospital stay, we’d been very positive. My husband and I were very close and helped each other cope – we lived in the day and didn’t think about the future. At that point we didn’t know what it held; we just wanted to be with Doorbell as much as possible because we didn’t know if he was going to die. It took my husband about 1 year to really trust that Doorbell was not just going to expire at any moment. He went through a lot of anger and emotions for about 2 years. I didn’t understand that – I didn’t have a lot of angry emotions; I was just overjoyed that our son was alive and thriving. He was alert and very bright as a baby. We were all amazed when he recognized letters in the alphabet before he could talk. He stunned us with his use of American Sign Language (I was fluent at the time and decided to teach him to sign) and completely floored us when he started reading at age 3. I thought – AH HA! This will be easy – he’ll thrive in school.
He started preschool around 4 ½. That’s when the calls started coming. Your son can’t sit still, he constantly interrupts and corrects the teacher, your child cannot cope in ‘circle time’, your child doesn’t understand personal space, your child needs to have the teacher’s attention constantly…your child, your child, your child.
Who was this child? Yes, our socialization interactions were limited. We didn’t have friends with kids, we couldn’t even think of daycare with his food allergies and worries about possible illness from a compromised immune system. But we went to parks and such; we tried to have a very ‘normal’ toddlerhood. But I wasn’t prepared for this.
So we found a small progressive private school and Doorbell has had the freedom to work through some of his social issues in an environment that is very forgiving. His doctors have never recommended medication; we have never had any kind of a label for him. Part of me wanted it that way but part of me wanted to KNOW – what is going on? I am the type of person that needs to know what and why. No one could tell me – his doctors said ‘wait and see’; his teachers said ‘wait and see’. I tried – I saw us move 3 steps forward and 1 step back, 2 steps forward, half a step back etc. But I noticed that Doorbell was not writing well, he was choosing to not attend classes, he was disruptive most of the time, he had some nervous ticks and when his anxiety peeked, he couldn’t stop talking – and I was stressed.
At age 9 ½, I finally decided to get him a neuropsych evaluation. Because I KNOW that you don’t go through the kind of fire he’s gone through and come out unscathed. When he was young, his neurologist had always told me that he probably has some sort of brain damage, but what it was, was not apparent – and yes, we could do an MRI but she said that the only thing it would tell us is that there was damage – at the end of the day, he’s still the same child.
Years later, I realized that was not enough, I wanted to know if I was expecting things of him that he wasn’t able to accomplish or if I needed to find a different way of teaching him…I needed something to help me navigate the stress of what was ‘going on’.
The neuropsych was great – the results showed where exactly Doorbell’s strengths were and what areas were compromised with suggestions and recommendations to help him cope with some of the issues. His IQ was well above normal – and even though I know IQ is not always the best indicator of creative intelligence, it did make me feel relieved that he was functioning well.
The downside was that he had been given a label, mostly for the sake of having insurance pay for this eval and so that we can use this eval to receive ‘reasonable accommodations’ if Doorbell went to a different school in the future. He was diagnosed with a Non-Verbal Learning Disorder and ADHD. The doc reported that Doorbell was bright, articulate young man with a nice personality – and given the severity of his birth situation, it is miraculous what he has accomplished. And the best part, all of the issues he struggles with are things that can be overcome with maturity, time, patience and practice (possibly drugs). Finally – an outcome I could sink my teeth into with a road map for improvement.
What was completely unexpected was the overwhelming amount of emotions that surfaced the evening after bringing home the written report. I spent the entire night sobbing – not really knowing why, but sobbing none-the-less. I think I was angry – finally.
Angry with the doctor that refused to give me a C-section despite everything happening that indicated severe distress with Doorbell; anger that my son was going to struggle from a situation that he did not ask for, sadness for him because I know he is teased at times and feels frustrated because he speaks like an adult but writes like a pre-schooler, guilt that I was so angry when we were so lucky that Doorbell is the person he is when so many struggle with disabilities far more severe.
I can’t seem to get a hold of my feelings. They are all over the place. And I cannot believe that they took so long to come. I really thought I had dealt with everything and I’m not sure why it’s so different. Everything that the eval ‘showed’ was not surprising – so why am I so emotional now? What difference is there from the day before he started the tests to the day after I spoke with the doctor? There is NOTHING different, my son is the same sweet little boy that talks non-stop, jumps with excitement over EVERTYTHING and says things like “I’m in an existential quandary”. So why is having this on paper so different and difficult? What really kills me is that I’ve started implementing some of the recommendations, have started weaning Doorbell off white flour and sugar and started acupuncture with positive results…yet I’m still struggling emotionally.
I know that we have another hurdle that I’m also not sure how to handle. Medication – to help him focus. I go back and forth with one person in my family about this. EVERYONE in Doorbell’s life has suggested that we avoid medication except one person. Her argument is valid – why would you not try something for your son that might give him clarity and focus and possibly make his day to day life easier? Would you keep insulin from him if he was diabetic (this is an argument I’ve heard several times from different sources – always using diabetes as an example)? I don’t have a good answer – except to say that I’d rather try other alternatives before turning to pharmaceuticals. But am I denying something to my son that might be beneficial? I don’t know – I just don’t know… I’ve read countless articles from both sides of the argument and I’m still no closer to an answer.
So that’s where we stand. We are three weeks into Doorbell’s dietary changes and he’s dropped 5 lbs and seems calmer; but is that enough? I wish I knew.
About Rutabaga the Mercenary Researcher
90 Comments on “When It’s On Paper”
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I was leaning about an inch away from my screen reading this, because I was so invested in it. How proud you must be of your son–he’s clearly a fighter. I don’t have any children myself, but I can’t imagine what it must feel like to be in the situation you’re in having to make those hard choices. Just from reading this, I’d say you’re doing a fine job.
Katie – thank you – that means a lot to me. I have to say since I wrote this and it’s been published (about a month) I’ve seen huge changes in my son, and my mental state of mind has calmed down quite a bit.
Having the support of all these wonderful people in this blog world makes a huge difference too – thank you again for reading and commenting.
Wow. Just wow. There is nothing I could say that would accurately reflect how I’m feeling about all that. You are amazing, your son is amazing.
Thanks Steph – he’s amazing alright – I’m doing what parents do – you’d do the same and are doing the same for your son. Doing whatever you can to help him navigate through the world and be safe.
You are a real champion for your son. You have been through so much more than most parents have been through just to get him to where he is today. You are doing what is best for him and will know what is best for him, whether that is medication or none. Keep up the fine work you are doing. You are a good parent.
Thank you – that means a lot to me. He’s a rather amazing person – I hope I’m doing right by him! Thank you for reading and commenting.
Reblogged this on The Mercenary Researcher and commented:
Eric invited me to post on his incredible blog – where people share their experiences of mental, emotional and physical health conditions. I’m honored to have been asked and allowed to write about my feelings for my son.
there’s no question the kid is a fighter. here’s what i wonder – how many doctors would also be the “fighter”? how many doctors would have looked at him and said, “there’s no chance. why bother?” maybe it’s not unusual, or maybe it’s very rare for doctors to give up, i have no idea. or maybe there are none who would have given up. i’m wondering what you might have learned about that part of this unimaginable event.
One doc did ‘give up’ but another saw some Rapid Eye Movement and bagged Doorbell- so it depends on the person.
One day we went to visit D’s surgeon and as we were leaving – the surgeon pulled an intern to him – pointed at Doorbell and said “See this kid? This is why we never give up – you never know so you have keep trying” – it made me cry.
that’s what i was trying to find out. thanks. it’s both wonderful to know there are people like that but also scary to know that they’re not all like that.
I know – but I always try to think that people are doing the best they can. It’s got to be a hard job where people are depending on you to always do the right thing.
i like to think we’re always depending on everyone to do the right thing.
Me too ~
Denise,
I had no idea your son had been through so much. It is truly amazing that he is still with you and thriving.
As to his challenges, you have to do what you feel is best for him. That’s for you and your husband to decide. You guys know him best and interact with him on a daily basis. Even if you end up putting him on drugs that won’t be enough. He’s going to learn differently than most kids. It sounds like he is extremely smart and learns very quickly, so he’ll get bored in a conventional classroom.
I can tell you from experience that drugs like ritalin do help, for a short time. I had a step-son who was ADHD and they medicated him. It worked until his body became immune to the dosage and they had to keep increasing the dosage for the desired effects. So I might save medication for a last resort. It’s going to take trial and error, but you just have to find what works for him. I have faith in you and your abilities. You are a very smart and strong woman who is dedicated to her son and I have every faith that you’ll not only find what works, but that you’ll help him excel.
And for those times that you may get a little stressed out or need to vent you can always vent to me. Lord knows I owe you after you let me vent and ramble on the last couple of weeks.
Your dear friend,
Twindaddy
Twindaddy – I’m now all misty eyed. Thank you – you owe me nada – as a friend, we give to each other freely.
I didn’t think about the meds and body changing like that – so your advice is a nugget of information for me to store in my head…last resort is a great idea.
I try to not live too much in the past anymore – that was Doorbell’s baby/toddler story – I want to move forward and not become bitter about it – which I’ve seen in other people and it makes me sad for everyone around them as well as themselves.
Yup, that kids ‘been around the block’ so to speak – and it’s ironic that I’m having a HARDER time now than when he was in danger of dying. How does that happen??
And thank you – you’re words mean so much to me.
Living in the past only blinds you to the present. And no good can come of it.
Probably you’re having a hard time now because it’s now official. They’ve actually given you a diagnosis. Suspecting something is different than having it confirmed. D will have a different path than most of us, but he’ll still get there. And he’ll do so with your loving guidance.
It’s good that you have him in a private school because in my experience the public schools want nothing to do with hyper children and do all they can just to pass them along and do as little as possible to help.
The ADHD child I raised is very different from yours, from what I can gather, but if you ever have any questions I’ll be more than happen to share my story with you or answer any questions you may have.
I so appreciate that – having someone with experience is always a good thing – just knowing that you’re not alone is a relief! I’m glad we met, Twindaddy!!
Me, too!!! You make me laugh and I need all the laughter I can get right now!
hee hee..
I fear I am going to have to face the medication question at some point as well, and I always come down to two questions: 1) Is the purpose of the medication to make things better for your child or just easier for other people? 2) Will the medication change the wonderful, unique person that is and always will be your child?
As parents, we second-guess and overwhelm ourselves with feelings of inadequacy all the time, but never more so than when our child doesn’t fit the norm. My daughter brought home a report card yesterday, failing Grade 6 Math and Science, scoring 90s in Music, English and Drama. She was in tears. I say screw math! Sing, kid, sing!
Thanks for this post, D.
Thank you Ross – (I can’t call you Rosemary in a serious comment, now can I?) . My son, when he was in a charter school, got ‘in trouble’ in every class but music. So I hear ya. I hate grades – so I like that we were able to find a school that doesn’t use grades. It’s a leap of faith -and a struggle.
I ask myself those same two questions myself – and so far no one has said to medicate him to make it easier for them … so now I’m left to wonder – will it be easier for him? And do you ‘trial’ on your kid if you’re not at a last resort because we ‘trialed’ so many things when he was in the hospital to see what worked – all to his advantage. Oi – you’re right – it’s always second guessing.
We (I) second-guess everything with our kids. It’s just that some decisions have greater ramifications than others. I sometimes feel a Magic 8 Ball would do about as good a job at decision-making as I do.
I can get behind that.
What a story you have and it sounds as if you are doing everything right for your son. I have no doubt, with you by his side, he will thrive and go on to have a great life. I can relate to so much of what you write (thanks for the mention, by the way) having had a daughter in the NICU for six weeks (details to come in an upcoming post). Anyway, you ask why the anger is coming now? Who knows? I know when I am actually going through a crisis, I am usually calm, cool, and collected. It’s afterwards that the floodgates open. My husband was a rock through everything we went through. Ten years later, almost to the day, he fell apart. I believe our bodies hold on to our emotions, and at some point, if we are lucky, it will all come pouring out. I think it’s a good thing…….
I hope so! And the time that elapsed btwn writing and publishing – my emotions have calmed down and I’ve seen some very positive changes in D.
I agree, I think being ‘in crisis’ makes you have to focus on keeping things rolling – and I know it was easy to disconnect from the emotions and concentrate on all the technical stuff happening – and his docs and nurses were all so fabulous.
I look forward to reading about your daughter’s NICU experience – I hope it was a good one.
I found it odd that my husband & I were so close when D was in the hospital but when he came home, we had a rough year with our relationship. But we worked through it – and some of it was his anger coming out and working thru – and being nervous about being on our own with a sick baby. But it’s all good ~
Thank you for inspiring me to comment and then write –
Thank you for sharing. I hope to see an update about your son’s progress soon.
Thank you!! I will update!
I was sobbing by the end of the first paragraph. Forgive me if my comment is in the realm of the ridiculous. Could a tiny part of Doorbell’s problem be that as a highly intelligent kid he simply is “bored” at school? And the writing problem? Is it a pathway eye-hand coordination thing? When I was in grade 4 my teacher had me sit in with a grade 2 class for a week, hoping to improve my (messy) writing skills. Helped for about three minutes when I learned that quality was more useful than quantity. No one needs to write now-a-days, what with computers etc. My writing is worse than ever and I have never found out why it was bad in the first place. Keep up the great work, you guys.
I didn’t mean to make you cry –
His school is really a good place and offers him the opportunity to study what interests him – he’s smart but not genius smart. So he’s not board – I think b/c writing is physically difficult (and it’s typical for NVLD people – dysgraphia is what it’s called) that he gets frustrated in class when his writing ability is far behind his verbal ability. Computers and keyboards are what everyone recommends – so it’s great to be in this world right now.
My writing is horrible too – so I can understand a little how he feels – but for him writing a paragraph is like climbing a mountain. the writing is hand-eye coordination and that part of his brain is what was affected by his lack of oxygen – the brain is amazing and it has rewired itself to be verbally acute since visual processing is impaired.
Thank you HE WHO – I appreciate your kind words ~
Wow, Denise. What a story you have. I am amazed at your inner strength and level-headedness in all all that you’ve been through. When you ask about why are you emotional now, I wonder if perhaps you have been bottling all this emotion inside of you and for so long. For so long, you’ve had to be strong. Just because time passes, it doesn’t mean that it is going to go away. I hope you are taking care of yourself, too. Your son sounds incredibly bright and I know you must be so proud of him. Medication is a big step to me, so maybe take some more time. Schools seem to put so much pressure on kids. It irks me, because their environments are far less than ideal usually. I have a feeling this kid is going to come out of all this way out on top! He is, indeed, a fighter. Trust your instincts.
Thank you. I think you are correct – that I’ve been holding all this emotion and now it’s come out and seeing it on paper sort of solidifies what it “IS” – and everyone here is so supportive. It makes me all teary eyed.
Honestly, my son started kids Yoga and he is so happy after the class – I wish he could it EVERY DAY!
Our school is beautiful in that it doesn’t have those pressures – like grades, and desks, and being silent etc. He’d be eaten alive in a public school setting (and it is great for some not so for others).
I am no more strong than anyone that is in the same situation – you would be amazed at what you can cope with when the need arises. We are all of us amazing for what we do every day.
My heart goes out to you and I know exactly where you are coming from. I too, was against medication. I did end up giving my son medication, and I’ll tell you why. Mostly for the reasons your friend pointed out. He needed to get over the hump. While ADHD doesn’t really ever go away it does get better, mostly because we mature and learn better coping mechanisms and hopefully with the coping skills we learn and some maturity we won’t need the meds anymore. That is what happened with my son. By approx age 16 he stopped taking his Ritalin, he is 23 today and copes quite well considering what he deals with. The medication allows better focus during the formative years and therefore the coping skills we are teaching stick. School was a nightmare for my son, and we could not afford any kind of specialized education. I took on the school district to get him accommodated. It was a nightmare for me too. He has always been above average intelligence, most ADHD/ADD kids are. So I knew his struggles had nothing to do with whether or not he was smart. Diet does help tremendously. That was a powerful tool to have in my arsenal. However, back then other people did not understand about diet. The information was not as mainstream and so I had difficulty restricting his diet while he was at school or with others. What he did do in high school was transfer to an adult type education where you work primarily at your own pace on the computer and he finished all of his course work and graduated with honors. I have never advocated medication where it is not necessary. I am just saying for my son… it helped, and when it stopped helping we stopped the meds. Hang in there, it sounds like you have a great support network.
Thank you Dani – it’s so great to get a wide range of experience for different people. Sounds like you made the right decision for your son – and that’s the same reasoning that my family member has put forth. Diet is helping, and exercise – and maturity. When that is no longer working – I’ll probably seek out more information on medication. And you’re absolutely right – everyone is different and you can’t just have one way to do something for everyone.
I do have great support – including this beautiful blog world with wonderful people like you to share your experiences.
Hi…
I must say, I am totally impressed with any one (much less a ten year old) who can claim to be (and understand that he is) “… in an existential quandary”! Seems like a pretty bright (like light years ahead of many adults) being. I sincerely hope that you will be able to continue to offer him the love and supportive environment he seems to be currently getting. Imagine if Einstein had been stifled because he couldn’t write very well.
I sense that not only did Doorbell surprise everyone, overcoming the things he did, but that you have realized what a delightful little person you are living with. Seems to me that’s about the best thing you can do for him – celebrate his masterful selfhood!!!
Thank you! He surprises me on a daily basis!! He’s a pretty cool little person.
I knew he was my kid when the “Existential Quandary” came from his mouth – that’s something I would have said in high school! He picked it up from a song – and didn’t really know what it meant but could sort of put it in a context of looking at a map!
Thank you for reading and your thoughtful and much appreciated comment.
What a story you all have. You’ve dealt with it all bravely — give yourself a break if some of it is getting to you. Life does that — it may be the season or the weather or any one of a million things that makes you take it harder right now. It doesn’t matter. Don’t beat yourself up over having feelings.
My son is ADHD and I am in favor of the drugs. He was flailing in school for years in Switzerland where we live where they don’t believe in ADHD or medication. He was considered a problem. We tried every alternative (although eliminating wheat was never offered or tried). Took classes, counseling, you name it.
When we returned to the US his teacher recommended he see a neurologist. Like your son, Jacob is of above average IQ — but at some point I realized that he needed to get through school to do anything in life. And so we started with the drugs. They make a huge difference. Seriously. He is still not a great student (a junior in college). But he will make it through college and then can use the meds or not as is appropriate for whatever the next step in his life.
Earlier today, I read this article in the NY Times: http://well.blogs.nytimes.com/2013/03/14/how-creative-is-your-doctor/?ref=health
One of the things it talks about is finding a doctor that can treat the patient with medication while letting the non-medicated plus side come out. Jacob is often off his meds now when I see him — vacations and weekends. But he uses them to help him get through school.
As a drug safety person (medical writer NOT scientist, NOT doctor) I did a lot of research on the drugs. I am comfortable with having my son take them, for what that’s worth. But not all drugs work for all kids — my son did poorly on Adderall but well on Concerta. It just depends.
Good luck. You will find your solution. And I think you are an amazing mother.
Elyse – thank you – I appreciate your kind words – sounds like you’re a pretty amazing mom, yourself!
I feel relieved to see such a spectrum of opinion and knowing that there are positive stories about using meds for situations. I will look at the link -thank you.
We have been fortunate to have a great group of docs that have shown us a variety of options to try.
Sounds like your son found what helped him get through it rather than it being easier for people to ‘deal’ with him – that’s what is important, eh?
Have a great weekend.
You too!
This is such an amazing post. And your son has amazing strength in him – so do you for keeping the faith and guiding him through life, even if it’s challenging.
I hope you can find a way to direct his energy constructively, he sounds brilliant and I’m sure will have a fantastic life.
Hugs xx
Thank you Pixie Girl ~
He’s tenacious – that’s for sure. And I totally love him – so I hope we can find the right path…I think we’re on the right road to get there (to mix my metaphors).
What a strong, brilliant boy you’ve got there. Thank you for sharing his (and your) story
Thank you – It was my honor to write for BBW!
He sure is quite a kid!
Grief, it sounds like. Strange to think about grieving when he’s alive. But what you’re going through sounds like grief. Or maybe relief. Or both.
Sometimes when you get an answer, it helps you let go–or let out–those emotions you’ve been holding onto. It also opens up more questions, doesn’t it?
Sending you hugs.
Thank you Kylie -definitely grief for some past stuff!
Ruta, your son looks like a kind, handsome and wonderful little human being, obviously one who has strength and purpose. After what he’s been through, I would imagine he is free-spirited and “different” in the very best sense of the word as someone is when they go through a life-threatening and life-changing incident. Doesn’t matter how tiny/young he was. And I’m sure it’s changed you and your husband as well. I think you have the right instincts — you are his mother and “something” is telling you what you should do. Trust that, trust yourself. You know best. Very moving story and all the best to your and yours.
Thank you Brigitte! We changed – and for the better!!
Dear Rutabaga. Wow, what an ordeal for you and your son to go through. I have 2 kids (out of 3) that had a hard time in school. It’s not easy, and yours has medical conditions to add to it. I feel for you Rutabaga. Follow your maternal instincts. They’ll never steer you wrong. xo
Thank you Wendy, sometimes I don’t even KNOW what those instincts are.
For me, it’s a gut feeling. If doing something for your child makes your stomach turn, then it’s probably not the right thing to do.
I totally know when it’s WRONG – my stomach tells me true –
Then follow your own instincts Rutabaga. I’ll be rooting for you.
You are awesome.
I think I love you even more now… if that’s possible.
You’re an amazing person, mt friend. As is your progeny.
Aw Hook – thank you – I don’t know if I’m amazing – you’d do just the same!
You are an amazing person, Denise. So is your son. I can’t imagine how difficult it must be to make such hard choices.
Thank you – I’m really not amazing – it’s all on the Doorbell’s side!
Hopefully we’ll be good with what we’re doing right now!
As someone who suffers from depression (and has since a very young age), I can tell you that dietary changes can have an enormous effect on the brain. I hope the diet has a lot of positive changes for Doorbell. Fingers crossed on this end!
Thank you – I’ve seen some change and when he does Yoga, it’s tremendous the difference in whole mindset.
Isn’t it interesting that some of the most clever and funny people suffer from depression?
It is interesting. I’m not sure the correlation, but it would be interesting to see a connection. Honestly, passing that hereditary demon to someone else was one of my big reasons for choosing not to have kids.
I bet your other qualities would be pretty spiffy to pass on ~
One of my nephews is practically a little me, so I’m content with that. Also, I like to think our dog takes after me in a lot of ways.
Hee hee – you’re kind of adorbs.
What a fantastic post! You must be so proud of your son – what a fighter! I found myself sympathising so much with your story. My own son, though nowhere near as ill as yours, also had very worrying/scary health issues at a very young age, has ADHD now which his teachers can’t cope with and my wife and I too get angry/upset at the report cards twice a year. We have also, so far, chosen not to use medication.
Your story is heartbreaking and I would like to re-blog this to encourage my readers to come here and read this themselves.
Thank you for sharing this.
Ken
Ken – you honor me with that entire comment – thank you. My son is pretty fantastic.- I bet your son is pretty fantastic too. Our children can endure so much, can they not?
It’s so hard when we have to figure out what we can reasonably expect from our children, how to teach in other ways that work for them and to keep our anger at the result of outcome (i.e. the behaviors) separate from the child. Report cards are hard – so much at stake based on a letter grade. I wish you well and hope your all able to get on a good path for your child and your family.
Thank you for reading and commenting and of course you can totally reblog ~
Thanks for your loving comment – you are so very right about our kids and how much they can endure. I think our anger tends to get directed at the authorities who should know better rather than our son – though sometimes that is difficult to do as you say!
Best wishes to you and your family
Thank you! We were lucky and able to afford a progressive private school – so there’s no grades, not testing – and it has made a world of difference. It’s a leap of faith to be sure – I was raised in a traditional school setting so wrapping my brain around a progressive education model has it’s own challenges – but he’s thriving and I see what great kids he goes to school with that come from all different backgrounds – not just having a LD or physical issue – just a group of kids learning in a different way than I’ve ever had.
Best wishes for you and yours as well – I’m glad we ‘met’.
Same here! Very glad to have met you indeed
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I think what you have written is an amazing story of your journey and feelings. We too have an amazing bundle of 10 year old energy who’s mouth moves much faster than his writing ever will. We have not had as much luck with schools but I work with as an OT with kids for a living so that side has been easier. All I suspect is that if we navigate these roads of childhood well then the next generation will have some brilliant adults.
Vicki – thank you so much.
So as an OT – do you work with your bundle of energy to help him/her improve writing skills or do you focus on using a keyboard and other forms of communication?
And yes, I’m pretty sure we’re raising up very intelligent & brilliant future adults!
Your story inspires and awes and makes me prayerful, mindful, teary-eyed and a lot of things. A mother myself, my son had borderline dyslexia through school (he is now on the brink of getting into college) but we coped. And yes, I smiled at the ‘existential quandary’… it is the kind of thing my son spews during emotional highs… along with Nietzsche!
God bless your little one and you! He will be your corner of the pink sky always – a source of joy and wonder and proof that there is a merciful god someplace not far!
Thank you MJ – your comment touched me as is seems my story touched you. So many of us learn the joys and challenges of have a child that is not ‘quite the norm’ – it’s good to have so much support as we learn to navigate and help our children grow to use their talents. Take care, thank you for reading and your loving comments
Your story is so compelling and I literally also felt all the emotions myself as you described them…. I can also empathize on many levels…. and including as mothers and sons.
My son was diagnosed with Tourettes when he was 12 years old…..I felt guilty because both his father and I had yelled at him continually to settle down and to behave and to sit still. We especially hated his constant sniffing …..and in irritation we both would constantly tell him to stop that sniffing ….. and say things like “for Heaven’s sake, go blow your nose”, altho it was obviously “dry”. I feel guilty for both his dad and I giving him Claritin for his stuffy nose , altho obviously with no “stuff” in it! We thought he trying to get attention….and so we gave him plenty of NEGATIVE attention, unfortunately. It was out of ignorance tho.
Unfortunately, It wasn’t until he started “bahhhing” like a sheep that we knew something was seriously wrong.
I had just relayed the whole story in writing here ….and then deleted it . I realized it was waaaaay too long for a “comment” …..and sorry, but I don’t know the proper procedure and I also don’t want to break any rules re “blog etiquette”.
So am thinking maybe I’ll save the whole story and use in response to your kind invitation as a guest blogger if you like…. ?
(Altho I do also have a story about my weird, but TRUE, experience with my apparent “doppleganger” that I thought you might be interested in hearing too…..and which was what I had originally thought I’d do!)
So anywaaaay……now it is a “toss-up”…… as the experience of my son being dx with Tourette’s is powerful too….AND INSPIRED by your blog….(which is brilliant, AS ALWAYS!)
Vicki – I’ll post BOTH stories. I never knew you had son with Tourette’s – and I totally understand the ‘stop doing that’ kind of stuff before realizing – oops – they cannot just ‘stop’.
Here’s what to do for posting – write out your stories and then email them to me (use me work email that’s fine) also send me an email on FB that you send it in case it goes to spam. I’ll put your name and whatever you’d like about yourself in the post and then publish it.
I look forward to hearing about your son and your doppelganger!
no matter what you do, you will make the right decision with the knowledge that you have–both my sons were born extremely prematurely — both are in their twenties now and thriving–there are always questions–they do not go away – just do the best you can with the knowledge you have
Thank you so much for your kind and wise words! I’m always grateful to get some perspective from those that have ‘been there’ and have seen their children grow and thrive into wonderful adults!
Rutabaga, I was going to comment very much along the lines of what Twindaddy said. So I won’t repeat his words, I’ll just second what he said.
Whatever happens to Doorbell in his life, you’re going to be there for him, which is more important for a kid than anything else. Having the unconditional support of one’s parents is vital at all ages.
Thank you – those are wise words indeed. I would always want my parents to support what decisions I made – and I still do.
I wrote about my own son and his ADHD struggles here. (A Tale of Two Meds and One Teen). Our son did Concerta and Wellbutrin. Concerta helped the concentration, but he lost 2 pounds every month he was on it. Wellbutrin worked well and since he has depression on top of it, seems to be a good solution for now. I wish he’d been diagnosed at an earlier age; maybe we could have had success with diet changes, creating new habits, etc. Good luck. Be glad you have a diagnosis should you choose public school. It can be a terrible fight with the Spec Ed. department, though it can also be amazing.
I am going to find your post –
I’m always glad to hear about successes people have had with what they’ve tried. I’m positive that all different kinds of therapies are beneficial for the right person – so I want to be open to anything out there.
Thank you for reading and your thoughtful comment -
Funny how things change when kids go to school..it one of the many reasons I homeschool, there is no pressure to sit in a circle, write according to your age, personal space..the whole house is our personal space..I don’t have the worries you have( I know others that do) and must say you, your husband and your son (love his smile) sound amazing, you are all so strong.
Thank you –
I would have considered homeschooling if we’d not found the school he goes to -however, since he doesn’t believe me when I tell him that noon is 12PM; I don’t know if he’d have believed nuggets of factual wisdom I’d impart to him! Luckily his school doesn’t have all those crazy pressures –
I love his smile too – he’s a keeper!!
I’m not sure there is a right or wrong answer on the drug question… I studied psychology in college and took several classes that were devoted to researching and understanding the effects of drugs on our minds… and the results of those classes were always a bit questionable too: these drugs work but we don’t know how or why, these drugs should work, but they have so many side effects and aren’t as effective as we thought they’d be, these drugs should work but do something completely different.
I think you should just trust your instincts, and go with that. You are the parent. You know your child. Do what you think is best, but be willing to change if needed. I think that’s all we can ever really do, isn’t it?
Thanks for sharing your story. Since I’m not a parent yet, I feel weird throwing in my two cents, so you can take my words knowing they are from someone who hasn’t been where you are. But, I’m about a week away from becoming a parent for the first time, and I’d hope that as I delve into the parenting world I’ll be able to trust my instincts for any challenges that pop up.
Wow – you have ONE week to get everything perfect – there’s a test! Just kidding – it’s a pop quiz – and it can happen at ANY time.
I totally want your two cents – I like getting everyone’s insight – people have all sorts of wisdom to impart.
The pharmacy option is definitely the most confusing – but I hear some good stories from people – and obviously not so good stories – but it’s all about how it works with the individual, right?
Exactly, and as the parent, you have the best understanding of what makes sense for your son, which is why I say to trust your instincts.
Wow, amazing story! When my younger brother was born I was 8 years old. He was born with his esophagus detached. Any breast milk he consumed was going to his lung instead of his stomach.
He had his first major operation at 2 days old and then another a couple of weeks later. He had about a 50% chance at survival both times.
He’ll be having his 18th birthday in June
Your little fella is a miracle child, he certainly has a strong will to survive. As for the meds I’m pretty med skeptic. As a kid I was pretty hyper and moody, there was definitely a case to have me put on something. My parents weren’t into medication so that never happened. These days I’ve calmed right down, I’m probably the most balanced person I know (other than my dad) haha. In my family it was all about keeping a peaceful and safe environment at home, good food, supportive, open environment and discipline (set bed times etc). Oh and affirmations and sometimes spiritualist healing for medical issues.
There’s no “one size fits all” model, and I wouldn’t presume to tell you what to do. One thing I would suggest (as mandatory reading for any parent, let alone of a child who received major surgery) is a book called Trauma Through A Child’s Eyes.
Seriously, find and read this book, it might help you with the difficult decisions now and in the future
All the best, good luck!
Rohan.
Wow Rohan, what a story about your brother. It’s truly amazing what a small baby can withstand – so much more power or strength than when we get older.
I will look for that book. And it’s calming for me to know that Doorbell could just as easily mature into a calmer person – doing Yoga weekly and changing his diet has made a HUGE change. He does have a strong will to survive – from the first time I went to my OB-GYN, his readings were not registering correctly and they said ‘ you will probably not keep this pregnancy’ – and he was tenacious. He has something to teach me – I just know it.
Once again – I’m glad our paths have crossed as you have something to teach me as well.
What an amazing story. I adopted my daughter when she was about 4 months old, she weighed less than 8 lbs. A twin. Also malnourished through the pregnancy, no fault of the family. Both girls have brain malformations, exhibit the AHDH/ODD and are gifted students. I don’t know how they lived without the intervention of western medicine…my daughter was twice the size of her twin at 2.5 months. These kids are special – we raise them, guide them, put down guidelines for them. I believe they are here for a reason. Hug your guy for me
I know we’d not survived (my son and myself) without modern medicine! I will hug my guy and know he’s here for a reason. Thank you!
Sounds like your little girl is quite a special gift as well!