I let World Autism Awareness Day slide by me.
And I’ve been quiet about it during this month, Autism Awareness Month.
Because, you see, I’m still trying to figure this all out.
I’m still a newbie in this world.
And I’ve seen wars practically break out over the correct terminology to use, what treatments are the “right” ones, and on and on. I think it might actually be worse than the breast vs bottle or working vs stay-at-home mom debates ever were.
And when I read the different views, I’m completely swayed until I read the next rationale. And then my head starts to spin.
My son was diagnosed with PDD-NOS back in January. And that just opens another can of worms, since I’ve also seen arguments where PDD-NOS shouldn’t even be considered on the Autism spectrum. And then another that the term is going to be phased out eventually and simply called ASD(Autism Spectrum Disorder).
And then there’s the truth that I hate what my son is going through. I hate that things are harder for him than they would be if he weren’t dealing with PDD-NOS. And yet, I read that I can’t really love my child if I hate something about him. Bullshit. I love my child.
How could you not love this kid?
But then you add in that I haven’t truly accepted his diagnosis. Some might say that I’m in denial.
All the characteristics that were used to arrive at a PDD-NOS diagnosis are also things that can be a result of lead poisoning, which my child did have for years: his numbers still aren’t completely down. He’s made tremendous strides as his numbers have dropped… so who’s to say that he won’t continue making improvements and some day not have any sort of label on him?
Or maybe he will always live with these struggles. Maybe he would have had them even without the lead.
The truth is that we’ll never really know what was a result of the lead and what still would have happened.
I haven’t fought the label because it’s getting him the help he needs in school.
But, I still haven’t made peace with it. It still makes me angry that he struggles.
And there are those who would tell me I’m not a good mom because I haven’t made peace with it.
It’s disheartening- all the drama.
Whatever your child has to struggle with(whether it’s with Autism or even if it’s just getting teased for being the worst player on their baseball team), I hate that there isn’t more acceptance. That it can’t be understood that we all deal with things in our own way and that we all wish we could make things easier for our kids. There shouldn’t be nitpicking about what we decide to do in our own families: none of us is going through the exact same thing with our kids.
When it comes down to it, we’re all just parents, loving our kids.
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It’s a lot to take in, Shell. I can understand. And I’m sorry that there is so much debate about this. I completely agree, we are all doing the best we can for our kids, no matter their struggles. Hugs.
I didn’t realize how much debate there was until I entered this world. And then I just wanted to hide. B/c things are hard enough!
I’m sorry you’re feeling this way, but it’s completely understandable. And it doesn’t make you a “bad mom” that you’re struggling with accepting this. You’re mad and frustrated b/c this isn’t what you wanted for him–you didn’t want him to struggle and hurt and have a label. You wanted other things for him and his world and your world don’t make sense right now and you’re exhausted. You are still a good mother. You’re still fighting for your boy.
Thanks for understanding, Rach. I think we all just want the easiest road possible for our kids. That’s what I’d wish for mine.
I so feel you on this one. It sort of reminds me of my last week PYHO about support groups. They can drown you in ideas, philosophies, etc. And … Autism – it is just a BEAST of a diagnosis. By that, I mean – it is so broad, so varying, and no one has the answers. And everyone wishes they did. Hugs to you girl. Keep swimming. Because I DO believe your family will find a peaceful way to function. You love him. And that is the most important thing.
I really haven’t gone into groups/forums very much at all. Just reading a few blogs- and there are just so many different opinions out there. But none of us goes through the exact same thing, so trying to come up with a blanket answer for all just will never work.
Hugs dear Shell, you have the best heart for your boy.
So very hard … life just keeps on handing out a curve ball.
Over here, still many a thing, that I can’t say …
We all have our curveballs to deal with, don’t we? I just wish there was more support instead of people insisting their way is the only way.
the mommy wars are insane, I totally agree…I stay out of it mostly, but I just recently got my head bit off because I stated something like I don’t agree with therapy just for the sake of doing therapy…well, some moms think everyday should be therapy and blah blah blah…and I wasn’t judging, someone asked the question and I answered, but hot damn…
It’s so bad when someone asks a question and then only wants an answer if it totally agrees with their opinion.
Oh Shel…I understand your every line. This is tricky stuff. And a autism blog stuff? Even trickier! As a community – we will always disagree. But then there are moments – that we will all come together. We all want the same opportunities for our children.
You love your son. You are doing all that you can for him. “Making peace” comes with time…and we all work in our own time frames. Don’t listen to any blog that tells you different. ((HUGS))
Thanks so much for understanding, Lisa. I know we see different opinions everyone- especially on parenting blogs but then you throw special needs parenting into it too and it just gets more complicated.
I’m just happy at this point that my son is getting some help at school. And is making progress. That is what I try to focus on.
I agree. It’s tricky to do, hard to process and difficult to write. I am trying to share my own thoughts on this subject. I hate that we have to talk about labels for our kids so often. Each of my children fit many labels but it feels so official to have a professional confirm that, scary.
Cheers to you for being so understanding and thoughtful about it!
My favorite part of this post – besides the love and thoughtful parenting, because that’s a given with you – is that you used the word acceptance instead of tolerance.
(Acceptance we need more of. Thinking of you, sweet friend.)
xo
I knew you’d get the difference between the two. Acceptance is much more loving than tolerance.
Who in the hell is the whackjob that says you can’t truly love your child if there’s something you hate about them?? I think THEY need some sort of diagnosis….Cranium in Rectumis or something.
I don’t think I ever knew how your boy got lead poisoning. :/
I agree with that comment. I LOVe my daughter with all my heart and soul, but I hate that she has ADHD. Who was that moron?!
That was my thought, too- though that idea has a lot of support behind it. I actually can get their reasoning after reading enough posts, but it’s just not how I feel.
Mimi, I never really blogged all the details about it- due to a pending lawsuit against those at fault.
Sorry to hear about your son’s diagnosis. But it was apparent a long time ago that you seemed to me a fighting mother, who’ll go to any length for the best for her child. I’m sure you will find the best way to help your son.
I have been out of the blogging world and out of touch for about a year. Love the new streamlined look to your blog and see that you, like a lot of other blogs I follow, have moved to WordPress. I need to make the move too, but haven’t the first clue how to get it all done. That’s my project to work on as I jump back into blogland.
A fighting mom- I love that description!
Welcome back! My blogging partner and I are offering an online class next week that will walk you through all the steps of moving yourself to wp- I didn’t lose anything when I transferred! Here’s the info about it if you are interested: http://www.howtorockyourblog.com/transfer-your-blog-from-blogger-to-wordpress/
It makes me angry and sad that there isn’t more acceptance, that there has to be so much judgement. You are so right in that acceptance and tolerance aren’t the same things. They are vastly different with different intentions. We all love our children and are trying to do the best by them.
Totally different things. To me, tolerance seems to still have disapproval while acceptance is more loving.
Girl, I hate that you both face so many struggles. And to look for support and find contention instead? It’s just not okay. You’re an amazing mom with an amazing kid- no matter what. xo
You mean you aren’t sick of hearing me whine about all of this every single day? Thanks so much for always listening to me. xo
Sending you lots of hugs and love, my friend. You are right, we’re all just parents, loving our kids.
oxoxox
Thanks, Sili! xo
It’s disheartening 🙁 So many people talk about letting each family figure out what works for them, but it can be difficult to manuever different groups and circles, even without a “label” for either of my kids. I’m sorry you’re going through this, too, because it is so obvious how much you love all of your boys. I know you’ll figure out how it will work for you guys; I just wish it could be easier. xo
So many seem to say it and then don’t actually walk the walk.
I rarely talk about my eldest son being diagnosed with Asperger’s Syndrome. Why? Because often I feel attacked by others, especially within the Autism community. Most often, I haven’t felt the support.
Scarier is, I now worry about my youngest having AS. Signs I missed from my eldest at this age are slapping me in the face again. Am I being premature in worry? Maybe. It’d sure be nice to have the support of others from such a huge community. Instead, I am too wary to even mention it to most people.
Shell, I think you are a great Mom. I am positive that most Mom’s would go through some kind of denial. I am also positive many mother’s would not LOVE that their child was diagnosed with anything other than being a healthy “normal” child. It has nothing to do with not loving your child, quite the opposite. We all want the best for our children because we love our children.
I totally understand. It’s why even though there’s a huge community out there, I really haven’t jumped into it- aside from those who have already been reading me and “get” me. On those days when we have a really bad day, I think I’d lose it if I were met with more judgment. No one can be as hard on me as I am, so I don’t need that extra stress.
Thanks for understanding. xo
Hugs!!! I still feel that same sense of newbie-ness and we were diagnosed over a year ago. I totally get the same way when I read all the different articles/arguments/debates. It sounds great and I totally get on board and then I read an opposite point of view and it makes total sense and I switch sides. And then I feel like a crappy mom because most of the time I don’t have the tomach to do the reading or research that I need to do to form my own opinions. Blah. Sending more hugs.
Oh, my. You are so in my head. People can totally sway me with their view and then I read an opposing one and I’m swayed by that, too. I try to do research, but so much of it just gives me even more anxiety. So, I mostly deal with those who have had actual interaction with him instead of reading everything out there.
Oh Shell. I hurt for you. I don’t even know what to say, but I’m thinking about you and there’s probably no better mom to have than a fighter like you.
Thanks, Ali! xo
Hugs to you. I understand how hard it can be to accept a diagnosis you don’t want to hear, but know that you have a huge support system around you filled with people who care and love. Your son is gorgeous. Keep on being a wonderful mama, because you’re doing the best you can! xo
Thank you so much, Loukia! I definitely didn’t ever want to hear any negative diagnosis for any of my kids. I think as moms, we just want to keep them all in a bubble where everything is just fine. It’s hard to move out of that.
I understand every word of this post. I’ve found more drama in the world of special needs parenting than anywhere else and it makes me sad. We’re all just doing the best we can. Hugs Shell!
I really had no clue it was there until my son’s diagnosis. And then wow, did I see it. It’s so sad.
It makes me crazy that as moms we have to feel like we have to defend to the death every decision we make and in the process make the mom who made the opposite decision feel attacked.
How is it possible to “make peace” as a mom when your child is struggling. I am not a peaceful mom. Keep fighting and stop worrying about making peace. And oh yeah there are plenty of things about all 3 of my children that I am not crazy about, but that doesn’t stop me from loving every single little bit of them.
Ah, you so get how I’m feeling. I’ve always been a fighter, so I don’t see how this would be any different.
I’m sorry you guys are going through this, Shell. Hugs to you and your beautiful family.
And you’re right–we are all just parents loving our babies.
That’s all we can do, right?
I’m sorry 🙁 I don’t have words to make this better but I sure wish I could hug you again. I had no idea any of this was going on since I’ve been non existent in the blog world. I’m here if you need me. xo
Thank you- I’m so glad you are back around again! I missed my blogging lil sis!
Ah … sweet Shell, I can’t even begin to imagine! One of the reasons we home-schooled Josiah was that I hate labels! He was a VERY delayed reader (almost 10) and I knew that, along with his STRONGLY kinesthetic learning style (he scored zero on both visual and auditory), his dyslexia, and an auditory processing difficulty, would definitely label him … maybe for life! I’m NOT saying home-school your child! Only your family can decide that. I’m just saying that I share your reluctance to allow ANYONE define my child!
It’s hard to listen to other people’s definitions of our own children.
SO much to say and think. As with anything, you are entitled to take your time, mama. And you’re allowed to be confused, overwhelmed, mixed up and still hopeful and utterly in love with your child. xoxo to you.
Thank you so much, Andrea!
I can totally understand why you’d feel that way. That would be such a hard thing to come to terms with and to understand. And you’re right – you can love him but hate the illness (or whatever it is). Work through it as you need to – that’s all any of us can do.
That’s what I’m trying!
You love him, no matter what, and you’re fighting for him, whatever label is slapped on him. That’s what matters, and you need to hang on to that. *hugs*
Thank you. I do love my little men.
How can you not love that face!? What a handsome guy … and a brave Momma.
He is so lucky to have you!
I think he’s a cutie, though I might be a little biased as his mama. 😉
How in the WORLD could some idiot say that you cant love your child if you hate something about them? Im with you. Im calling bullshit. I think that sweet boy couldnt have a better Mama fighting for him, fighting for acceptance. You are amazing. Thinking about you. XO
Glad I’m not the only one calling bullshit.
Chiming in on the autism-related stuff like I always do, Shell. You know, I think it’s a good thing that you are skeptical of a new diagnosis. My now 12yo son was given a PDD-NOS diagnosis at 5. And it was RULED OUT at age 7! (He actually has Nonverbal Learning Disability, or NLD.)***** We thought our son had autism for 2 years. We told our families that their grandson/nephew had autism. And he doesn’t. So I think a little skepticism can be a good thing!******Basically, PDD-NOS means, “my kid has some autistic traits, but not enough, or not in the right combination to qualify for a more specific ASD.” So while playing the labels game for services is a necessity, in your mind, it can be called what you want. You can think, “My son has a few autistic traits.” It’s much less scary that way! 🙂
It really is such a vague diagnosis. I’ll take it b/c it’s getting him help, though! Thanks for chiming in! 🙂
We struggled with our son’s autism at first. I think that’s perfectly normal. We had been told for several years that he would be fine when they finally dropped the bombshell. My sweetie was in total denial for a long time. That doesn’t make us bad parents, it makes us human. Our son is 18 now and he is awesome! Oh, he still has his moments, what kid doesn’t? But the good things by far outweigh the bad. It will be OK for your son too…and for you…
Sandy
Thanks, Sandy! xo
I love how you said ‘bullshit, I love my son’. That’s ALL that matters. Society can come up with as many labels and then unlabels as they want. EVERYONE has abilities and everyone struggles in different ways. Some people choose to become the best they can be and some people are just jerks.
LOL @ some are just jerks.
I think this is why there are so many books are parenting. We each have different children with different needs that cause them to need to be parented differently. Your guy is so blessed to have you!
So very many different views!
They did just start testing lead levels in one year olds. I didn’t know if you were aware. That might make you happy some doctors are being proactive about it. I had no idea why this was necessary till I read your story. Oh, and that boy of yours…such a cutie! Hang in there. The world of autism isn’t black and white. As a teacher, I see exceptions to every rule.
They’ve been doing those for a while- all of my kids had them at age 1. But my middle son didn’t get elevated levels until after that, unfortunately, so it took a lot longer to catch.
This is such a fantastic and beautifully written post, Shell. Your ability to capture true feelings on a page is wonderful. I so understand and agree with all that you have written today.
Thanks, Leigh. xo
I think watching them struggle is the hardest part. And when it’s right there in front of you – trying to decide whether to step in. I never know what to do. I don’t want to be resented for constantly trying to help.
Anyhow, it always sounds like (to me) that you’re doing a wonderful job Shell. I hope his struggles ease.
It’s so hard to have to watch them struggle.
I completely understand everything you said. We are 10 years from when we first started looking at autism on our daughter, and while in some ways it gets easier, as far as accepting it, my heart will always break for the life my daughter has. Of course, she is severe. I love my daughter with all my heart, but HATE what autism has done to her. I reserve all my energy for helping my kids, and refuse to fight it out with the other parents. If they don’t like our approach, they don’t have to read my blog or associate with us. Some of them really are mean, but some are very kind, you will eventually find your place. Just follow your instincts, and be there for your son.
What you said about energy really rings true to me. I can be totally wiped out just from dealing with my kids… I have nothing left to fight someone, especially when the fight really and truly doesn’t matter.
You are such a beautiful mother. What mother doesn’t struggle when she watches her child struggle? Those who point fingers and judge should be more willing to open arms and hug, open ears and listen, open homes and share. We should all be slower to jump to conclusions and quicker to accept that one parent’s way of raising her family can be completely right for that family and still completely different from our way.
I really try that with all parenting views, special needs or not. When it comes down to it, none of us really knows what’s going on in someone else’s family and everyone has their own ways of handling things. And the biggest thing that makes me not judge is to realize that what other people do: it doesn’t affect me or my child personally, so there’s no need for me to jump in(unless it’s abuse, of course)
Many, many hugs to you.
When you speak about labels and acceptance, I completely understand. No one wants their child to be labeled, at least I don’t, however, like you mentioned, if it gets them the help they need, then it just might be worth it.
I still haven’t completely accepted that Buster has epilepsy, and that he may have it for his entire life. Yes, I know he has it, and I declare it on every single medical form that we have to fill out, I have to tell every single doctor we see, and I have to tell every child care provider (and baby sitter) all about it. But I still haven’t accepted that this is his life. I haven’t really allowed myself to think about what it means for him as he gets old enough to drive, and what that might mean for him, or what puberty will do. The truth is, if I think about it, it makes me sad, and angry, and want to scream.
Right now, I can only focus on what comes next. A doctor’s appointment in May. August marks 1 year without a seizure. Another appointment in November, followed by an appointment in May 2013. If he’s seizure free through August 2013, we can try to get him off his meds again…but that just brings a whole new set of worries.
Hang in there Shell.
We just want things to be as easy as possible for our kids.
Yay for almost reaching a year seizure-free!
I’m so sorry you and your family is going through such a hard time. It is so hard to see someone we love struggle. I hope things get easier and your son gets the help he needs.
He is getting some really great support right now- thank you!
I work with families around this diagnosis every day. And I say the same thing every time. A diagnosis does absolutely nothing to change who your child is. All it does is open up doors for services (at school) and give you resources for support at home. Your baby will always be YOUR baby, no matter what the diagnosis ends up being. What is important is getting the help that will ensure his success, which is exactly what you are doing. Be gentle with yourself – no matter what is going on with him (PDD vs lead poisoning) you are still allowed to mourn the loss of “normal” (whatever that is) and feel the frustration/helplessness of seeing him struggle. Big hugs.
OH Shell….There is no doubt you love your child! I have no advice but wanted to give you a virtual hug 🙂
Thanks! xo
Amen! Amen! Amen!
For years I fought to have labels. Because sadly, without labels, you don’t answers and help. I still struggle with what category my son is placed in, and it’s swayed depending on the need we have at the time. It’s a frustrating game. I hate that it’s a game we have to play to get them the help they need. My son was diagnosed with Asperger’s last summer. But, yet it’s mild compared to what others struggle with, but does that mean that he shouldn’t get the same consideration? His OCD is clear and sensory problems play a prat in our daily struggles. But, I hate all the overlapping traits for different diagnoses.
I hate when I feel judged by someone b/c they don’t think there’s anything wrong with my child and I must just be some crazy hypochondriac. I hate it even worse when I feel like he does something that proves he has some special needs, because I hate to see him struggle.
It’s a fine line that we have to balance. There have been days that I find myself wishing he was worse, so the help he needs is obvious. Then I wonder what the hell is wrong with me to wish that? Then something happens and he melts down and it doesn’t make sense, and I find myself saying “see!” this is not normal. It’s a roller coaster ride. I didn’t write any austism posts either.
We just want our kids to have an easy road. Or to get the help they need. I hate the labels… or oh, excuse me, as it’s been pointed out to me, the “diagnosis” but at the same time, of course I knew something was going on with my son, the same way you knew with yours.
It’s so hard to put it all in words- especially knowing there are those who would then nitpick over what we say, even though all we’re doing is being honest.
It’s funny how children can easily accept that people are different and not be judgemental but we as adults have such struggles and debates on it. I think this is another area where there is no right and wrong as its different for each child. Even children who don’t have Autism or Lead Poisoning have different needs from the next so really it should be a non-issue. If only it was that simple though…
All of our kids are different- I always cringe when someone thinks they have the one way things should be handled- that doesn’t even work with my three!
And we are all just doing the best that we can for our precious little ones. You are doing great dealing with the struggles, I am sure it doesn’t feel like it from time to time but you truly are Shell.
Thanks, Ang. It definitely feels like I’m doing things wrong a lot of the time.
Shell, All I can say is that I love you like I have had the priviledge of knowing you my entire life. I think your son couldn’t have been born unto better parents because no matter what the diagnosis, it doesn’t matter because you will love and fight for him all the same. xo
Kristen, you are making me tear up! Thank you. xo
Lots going through my mind as I read this. First off, BIG HUGS Shell! Second, I think what this and the world boils down to is perseption of “special needs” child. I kind of HATE that term because the kids are just kids, no matter what the diagnosis, reason, etc., is and it takes SPECIAL parents to raise ‘them’. It’s a good thing most parents never have to deal with medical, health or emotional complications with a child because THEY couldn’t handle it! (So they should keep their mouths shut!) Ok, I’m done. (LoL)
I think everyone just deals with whatever is handed to them in the best way they can. We just all need to remember that looks differently for each of us.
You’re doing a great job, mama. Don’t let anyone make you think otherwise.
Thank you!!
The people that would tell you that you aren’t a good mother are wrong. I can’t imagine ever being at peace knowing that my child is struggling with something that I could not fix. I’m not sure I would want to be at peace about it.
I don’t know if I’ll ever truly make peace with it.
Oh hugs to you and yes, we are all just doing the best we can. Love that my friend. xo
Nothing else I can do at this point.
First of all you hate the diagnosis and all the things that it comes with. You don’t hate your child. I love my oldest like a mad woman and would fight for him tooth and nail. I do however hate the bipolar that makes his life so hard. The swings that toss him around like a rag doll. But I never stopped loving him period. Do what you need to do for YOUR child and that is all that matters. What works for him and him alone.
Definitely- we love our kids so much. Even if we hate the struggles they have to deal with.
I totally agree with Angel, you hate the diagnosis and everything that comes with it. I still struggle every now and then with my son’s diagnosis of Aspergers. People who tell you your not a good mother, they just need to keep their mouths shut. You are an amazing mother. And he loves you so much!
He does love his mama, that’s for sure. 🙂
He is such a cutie!!! I think that what you are feeling is expected. You are a grreat mom, even for being in denial. I am so sorry that you are going through this. It cannot be easy, especially with how cruel the world can be. I can’t believe that some people say that they have to love the disease, or syndrome, if they want to love their child wholeheartedly. That, to me, would be difficult. I would love my babies, no matter what, but to see them struggling is always heartwrenching.
None of us wants to see our kids struggle.
That’s a lot for a mother to take in and I don’t see how anyone could make peace with it right away. It does not make you a bad mom. In fact, quite the opposite. You are doing what you need to do to help your son. That makes you a great mom!
You need to make decisions that are right for your family and will help your boy. Those who don’t agree need to take their judgy pants off!
Or at least, they need to realize that what I choose to do with my own family doesn’t actually affect their families!
You’re right, we’re all just parents trying to do the best for our kids. It’s crazy to me how intense people can be about their opinions on things. One way might be the best for person A, but it’s not the only way. We all have to find out our “right” way, and it does not have to be right for anyone but you.
You’ve got a sweet boy, doing the best he can and you’re an awesome Mom, doing the best you can.
I don’t think it matters if you live near de-Nile until your toes get adjusted to the temperature of the water.
That made me giggle. Maybe someday, I’ll get used to the water.
Shell,
You are an amazing mom. Just love your little boy and your heart and mind will sort out the acceptance of the diagnosis when the time is right. HUgs!
Loving him fiercely, every day.
Very well said as usual. And yes, the best part of his diagnosis is that the outside world can finally agree to get him the extra help he made need. And that is such BS that you can’t hate his diagnosis but still totally love him.
It’s been so helpful that he is finally getting the additional support he has needed, but wasn’t available until we had a diagnosis.
Spoken truth! We are all just parents loving our children and that is all we have to do, however that looks. I completely agree the judgement doesn’t need to be there. I wish people could just back off and keep their mouths shut but they don’t so we have to be the bigger people and turn the other cheek. But it still hurts! I think you are doing a great job and I love reading all your stories!
I think people need to realize that the decisions others make for their own kids aren’t affecting their families, so they can just let it go.
Exactly! Well said.
I would love to know where you read that you can’t truly love your child if you hate something about them, just so I could go there and call the author out on his or her bullshit. I hate that my child whines constantly these days and looks me squarely in the eye and simply responds, “No,” when I tell her to do something. Does that mean, according to this person’s warped standards, that I don’t truly love her? Uh-huh. OK.
If anything, NOT being at peace with the status quo – whether it be as trivial as whining or as serious as an ASD – and working to improve it, IMO, that you DO love your child wholeheartedly and want the best for them in life, both in terms of what the world can offer them and what they can offer the world.
So, you just keep doing your thang, Mama. Haters gonna hate. 😉
It was actually a beautifully written post that many agreed with– and that made me feel like the worst mom on earth.
Thanks for your support, girl!
Oh, Shell. You are exactly right, there just isn’t enough acceptance. What are we teaching our children if we are fighting over labels? As for acceptance, that takes time. And you are right to question the lead issue and keep fighting that battle too. I am very hopeful that he will continue to improve as his numbers go down. I have seen it in my practice…it’s a very real possibility. And anyone who has known you in any small way, like through this blog, knows how much you love your kids. xo
Thank you! We’ve seen such huge improvements in him in the past year, and the year before that, and the year before that. So, I still have my hope that things will keep getting better!
Oh Shell I am sorry you are all having to deal with labels but it does sound like having a label is what is actually helping you at this stage. Here is how I look at it. Maybe right now there is a label but in the future it could be completely different so I think it is okay that you are not embracing it loudly. There is nothing wrong with not wanting to stick yourself in a box. Things could and likely will change as he grows so don’t beat yourself up about and certainly don’t listen to any critics. None of them are in your shoes so really how the hell could they possibly know what is right or wrong for you and your boy!
Good luck and stay strong 😉
That is exactly how I feel! Bring it on as long as it’s helping him now, but I don’t want it forever stuck to him if it doesn’t need to be.
Skip the drama… just keep on loving your boy and getting him the best help in the world.
I just wanted to say, I admire you so much and have learned so many things from you. You rock, on momma! Just rock on.
Aw, you make me blush. Truly, I’m just trying to figure out what is best for my kids.
You’re an awesome mom. The end.
Thanks, Nicole. xo
I have learned that forums, about anything (car seats, bottle or breast, diagnosis on whatever) people are viscous! I really have a hard time finding valuable advice that way, because you have to dig through the BS to get to something valuable. If people would realize that we’re all doing this without a “manual” and learn to have some empathy for others, the world might be a better place. Might be.
Amen to you Shell.
I never understand those who think they have the answer for all kids!
I truly believe that you can love someone with all of your heart but hate something about them. My husband has a spinal cord injury and is wheelchair-bound. I hate everything about his disability but I still love HIM. My brother was an addict. We hated that about him but my family has never stopped loving him, not for a second. It’s okay to hate the things that afflict our loved ones – I hope you never let anyone make you feel like anything less than a wonderful mom. Everything I read here is saturated with your love.
Thank you for understanding, Jennifer. I can tell you really get it.
I would imagine it’s a lot to take in and process. And it’s easy to see that it’s the labeling and the non-acceptance and assumptions that you despise, not your child. We all want the world to be an easy place for our children to navigate but in reality it’s just not that way.
You are a wonderful mom because you love your child. It’s that simple. And it’s plain to see from what I know about you.
Thanks, Helene. xo
I understand you not wanting to get involved with the drama. You are a good mom, and you are doing everything you can for your kids.
The only drama I like is what is on tv. I had to shut down my computer and go away for a little while today.
You should never have to defend how you feel or the decisions you make for your family to anyone. I think that’s the biggest problem with the “mommy wars” the need to judge others decisions and feelings. This post was beautiful and your son is so cute.
All of our families are different, so it makes sense that we make different decisions.
First of all, what a handsome boy you have there! I’m sorry that there is so much scrutiny and judgment over treatment options and parenting styles. It makes perfect sense to be relieved about the diagnosis for the help it gets him but still not be at peace with it or even like it, let alone love it. How could you be? And with the diagnosis comes labels and new struggles and challenges. You keep doing what you are doing, which is loving your son and fighting for what he needs.
That’s all I know to do at this point.
I just read this, literally, after reading a CNN article about how the vaccine/autism research was a fraud. It made me sigh–finally I can feel good about all that torture by vaccine. Then I read this and remember for some families, it’s just one more “not” answer. Just one more, “here it is but we don’t know why.” Just one more article that doesn’t help a damn thing. And I’m ashamed I feel grateful my family doesn’t have to tackle the judgements that go with autism when what I should be doing is praying like a mad woman for the families that are. HUGS and I’m ending this comment now so I can hit my knees and just pray for you.
Thank you for your prayers! xo
I can understand your silence. It’s a lot to take in. I hope you find some answers within yourself soon.
Thank you. It’s hard b/c this is such a big part of our lives, but I’ve felt too much stress about the reaction to blog about it much.
It’s a lot to take in… that’s for sure. It’s also a fear of mine because I don’t know how I’d handle it. Nobody knows – I guess you just do. You have too. I’ve learned more about Autism from blogs than I have anywhere else. I do wish that people would be more accepting and understanding. Posts like this one helps to make that happen. Thanks for your honesty here.
You’re right, how could you not love that kid. He’s a looker! 🙂
I think that sometimes about parents who have children with life-threatening illnesses- that I couldn’t handle it. But I guess when we go through anything tough, we have no choice but to push through.
I hate that there isn’t more acceptance for people, too. Not just kids in school but for any of us that has to deal with something that is outside of “normal.” I’m glad that you are trying to get the help for your son in school, and I don’t think you have to be accepting of the diagnosis for that. I just sat through a meeting this morning where we had to tell a mother her daughter needs special education services because the tests came back with mild intellectual disability. It was heartbreaking. What I said to the mother, though, is that though it is hard to accept the words the bottom line is the same. Now we can get the daughter the services that are best for her for her future. I wish you the best in coming to acceptance with the diagnosis, but in the end you are doing AWESOME, no matter if you can get there or not.
Being able to get the help definitely makes me feel better about it all.
Totally agree about the sentiment of each family having their own issues to deal with and how even though it’s easy for people to judge, it’s completely fruitless. No one knows what it’s like to live in YOUR house with YOUR kids except you. Each family is different. Each set of struggles are different. We should be encouraging one another, not viewing everything through our own frame of reference and becoming incapable of empathizing with other moms. That’s where we need to draw the strength from :).
Exactly my point!!! 🙂
I don’t think it reflects badly on you that you haven’t made peace with this diagnosis, at all. Especially with the specific circumstances your son has with the lead poisoning making you uncertain if the diagnosis is a forever thing for him. I’m sure that makes it harder to move through the acceptance step.
You are a great mom.
I don’t know if I’ll ever get to acceptance.
Posts like these make me just want to drive up there and hug you hard! And then that adorable boy!
Love you, Steph!
I am going to go back and read the comments but wanted to post this before I get dragged away. I apologize if someone else said this. There are parents that get a diagnosis of anything and they become champions for that “label”. I am not that parent. I am the one that sticks my head in the sand and only deals with it when an issue comes up (hating every minute of having to deal with it). I choose to not look at it as denial but instead as fighting against a diagnosis that threatens to take my boys from me. You are not in denial. You are just choosing to not focus on a diagnosis that hurts your heart. You are a great mom!
I like the way you put that!
Okay, I just read this. I found PYHO through Jenn at … so this is love…, which I love her openness and I’ve been sneaking in for a few weeks to read these posts. Today’s the first time I’m commenting and I just have to say, WOW. I totally think you are a GREAT MOM becauase you feel indignant FOR your child. And yes, you can TOTALLY love your child and accept what’s going on, while hating what’s going on. That makes you an AWARE mom. You’d be a bad mom if you went with whatever anyone said and didn’t fight to make your son’s world better no matter what. And it sounds to me that you’re doing all you can. That it’s frustrating, but you’re trying. That’s super important; and I wish you all good things in life as your family moves forward!
Thanks, Molly Jo!
You’re right, we are all just parents, doing the best we can for our kids. I hate that you’re going through this. You are an amazing mother. He’s so very lucky to have you.
Well, maybe he’s lucky- when I’m not being an incredibly cranky mom. 😉
YOU.ARE.A.GOOD.MOM!!!!!
Don’t let anyone tell you differently, including yourself!
That’s all I’m going to say… you are…
Thank you, sweet friend. xo
Well I can honestly say I didn’t realize it was AAM because I’m at a school that doesn’t embrace their special needs department. Other schools I’ve been at have had special days to recognize it, along with advertising their races and things to do to raise money…not this one.
Just remember you’re a great mom – don’t let anyone tell you otherwise!
Ours schools around here don’t do anything for it, either. It was more through social media that I knew about it.
It breaks my heart that moms can attack other moms like they do. I’m so sorry! Know that the vocal critics are usually a very loud minority, and know that I’m praying for you and your sweet family!
That’s true- those who are outspoken aren’t necessarily in the majority.
You know who is a shitty parent? The one that knows their kid has ‘something’ up – be it behavioral, whatever, and doesn’t do anything about it. That’s the bullshit to me.
If I saw anything amiss with my kid, I’d want to check it out and do what I could for him. Which is exactly what you’re doing. Fuck the drama queens, Shell. There, I said it. You stick to your guns and parent your child with the love we know you have.
People who don’t even want to know and want to pretend everything is fine. Instead of realizing that the earlier you get help, the better.
Love your fuck the drama queens line. This is why I adore you.
Oh Shell. I know I’m just another friend here in a long list of people who have offered their support.
Nevertheless.
Here it is: my full support.
And I don’t think I can name another mother who loves her kids MORE than you do. For what it’s worth.
That means a lot, Julie. Thank you.
I can’t imagine that anyone would fault you for your parenting techniques, Shell. You are one of the kindest, most caring, and sweetest mommies I have yet to meet. And that right there? The face of an angel. With or without any label doctors may place on him.
I’m so sorry to hear about your struggles (and your son’s struggles) but I believe that maybe connecting with other moms who are experiencing something similar will help. And obviously turn to us whenever you need a shoulder or a soundboard or whatever.
XOXO
Isn’t he such a cutie pie?
I’m trying to connect- it’s very hard, though.
I think this “When it comes down to it, we’re all just parents, loving our kids.” really is the heart of the matter. xoxo.
That’s my thought, too- no matter what we’re going through with our kids. xo
So proud of you for posting this and for speaking your mind as eloquently as you always do. And I love, love, love the many comments of support I had to scroll through to leave one of my own. Always here for you Shell.
Thanks, Jess- and thanks for giving me the encouragement to post. xo
I’m sorry you all have to struggle with this.
Everyone has something, I guess!
So many emotions. How can anyone even fall asleep at night??
Anger about the source of the lead, all the what ifs about the lead. All the thinking that if only you hadn’t been around. All of it.
I feel for you.
And then you have the possibility of thought: misdiagnosis? Something else? Will it change? What’s his future? What IS really going on?
We never now. Doctors do their best guess, but they don’t know for sure without a solid physical validation. There are only tests, test scores.
But I will tell you this, Shell: I hope (and you sound like you are this kind of parent already) I HOPE you don’t see limits to what he can do, because he will surprise you. My 15 year old has Asperger’s, and some say it’s something else. Some say extremely gifted. Asperger’s is something they say they will remove from the Spectrum Disorder in a few years: that it’s just a different way of processing info.
He is on the genius scale for all tests.
No one really knows.
So much love to you.
I think that’s why I have such a hard time accepting- but the tests and evals don’t see all of him. It’s not a full picture of who he is and what he can do. Thank you for that reminder. xo
He’s so cute!!! Hope things get better:)
Thank you!! xo
Shell,
I’ve been so out of the loop for the past few months. I dropped out of the blogosphere right about the time you got your little man’s diagnosis. So glad that Alexandra pointed the way to you today.
You have such a powerful voice, wrapped in kindness and understatement. I love that you chose to use it on this topic. Don’t second-guess. Don’t judge yourself harshly. Just keep on loving.
-Sue
Thanks, Sue! xo
You’re an awesome mom.
You’re a good mama Shell and your adorable little boy is going to be great bc of you.
Anyone who says that you can’t hate a diagnosis or hate something about your child beyond your control and not love your child is just SILLY and ridiculous…you love your boys more than any other mom I know, you are such a VOICE in this world for parenting.
Your son may or may not be a lot of things, but not one of those things , tests, evaluations defines who he is, how amazing and awesome he is.
Keep doing what you’re doing and the answers will come along with the acceptance . What you said here about all of us judging and evaluating etc…is all true. Thank you for bringing it to light.
love you xoxo
I have a friend who keeps having to remind me over and over that I am allowed to feel whatever I feel and be wherever I am with what I’m going through. She tells me I need to stop overanalyzing my every emotion. So, here’s me, passing that dvice on to you. 🙂
I am right there with you in the “still trying to figure this out” camp. We received our middle son’s diagnosis of Asperger’s Syndrome two weeks ago. Although we expected the diagnosis I still find myself shaking my head in disbelief. There is a part of me that feels I don’t WANT to “make peace” with the diagnosis because I don’t ever want to become complacent about the lifelong challenges my son is sure to face. My heart breaks for him but I have faith that God will handle the future. I can only handle one day at a time…if I’m lucky.