With Your Cards To Your Chest, Walking On Your Toes
July 14, 2007
<blah blah insert insincere apology for not posting yesterday here blah>
I woke up in a terrible, horrible self-pitying funk on Friday. Noah was humming away in his crib and...all I heard was a symptom on a checklist. (I should clarify that Noah's babbling is not really "babbling" sometimes -- he usually just hums a steady vowel sound but changes his pitch and inflection. He mimics the melody of speech but not the lyrics.) It wasn't my son, it was my son's "disorder," and the realization that I was letting this "thing" change how I look at him sent me on a huge crying jag.
And I know (AH KNOW) that this thing is not a big huge serious thing. In the realm of big huge serious things, this is a blip. A trifle. A story we will one day laugh about, probably while trying to have an adult conversation over the din of Noah's VERY IMPORTANT STORY ABOUT WHAT HAPPENED ON DORA TODAY MAMA, DORA WENT OVER THE TROLL BRIDGE AND YOU KNOW WHAT? MAMA? YOU KNOW WHAT? THE TROLL WAS GRUMPY.
But while this is a tiny thing, this is also MY BABY we are talking about. My baby, who is struggling. Who is getting labeled with Big Bad Scary Words. Who needs help and seriously, Montgomery County Department of Health & Human Services Infants & Toddlers Early Intervention Division, I left a message over an hour ago and you haven't called me back and I NEED YOU TO COME HELP MAH BABY.
A friend called on Friday night to find out if everything was still okay/fine/perfect, since I didn't post at all. I told her I couldn't bear to publish another entry harping about it, because you know. The Interweb Pain Olympics. The nice, supportive comments eventually morph into people telling me to Get Over It, Let Me Tell You About My Kid's Cancer Or Don't You Know That So-And-So Has It Worse And So-And-So's Baby Just Died And I've Had 37 Miscarriages, You Selfish Whore.
"I'm just trying to keep everything in perspective," I told her. "I can't write about how upset I am, because I shouldn't be this upset. He needs speech therapy, not a fucking brain transplant."
"What the fuck," she said. "Get mad. It's okay to get mad. It's okay to admit that this sucks, that this isn't what you wanted for your kid and you are mad about it. I don't care if you read some blog about somebody giving birth to a four-headed autistic monkey child who already has breast cancer, it's fucking okay to get mad."
So hi. I am fine. I am keeping things in perspective. I am also a little mad, a little frightened and would chew my right arm off if it meant all of this would go away and Noah could talk.
After talking to some friends and wonderful Internet strangers, I've submitted an application to our county's early intervention program, which is supposedly the best in the area. And free! FREE. After living in DC for so long, the idea of state-run services that you can actually use and aren't total crap is blowing my mind. It's like we moved to a whole 'nother country. After months of doubting (and yes, even regretting) our decision to move here, it looks like it may have been the best thing we possibly could have done.
It'll take about two weeks to process our application and get an assessment scheduled. In the meantime, I managed to hustle myself a discount on some Signing Time DVDS (if by "hustle" you mean "opened up an email from someone who works there offering a discount, then crying some more because YOU PEOPLE ARE ALL SO WONDERFUL").
(And now it's time for another parenthetical tangent! I want to clarify that the earlier posts about the Bilingual Sign Language Genius Child at Gymboree were NOT any kind of slam or mockery of the idea of baby sign language. Not at all. I tried signing with Noah early on, but he never picked up any of it and I got lazy and let it go. My issue with the Bilingual Sign Language Genius Child was wholly and totally about her mother's awful and obnoxious superiority complex about it. Her daughter was incredibly sweet and smart, but her mother! Oh my God, she was terrible. I try very hard to not use my blog as some kind of passive-aggressive bashing ground, but this woman made me want to stab myself in the fucking eyeballs. She was show-offy and pushy and and would never ever shut up about all the classes and activities her daughter was enrolled in and blah blah blah, she just soaks this stuff up like a sponge, she craves being challenged, she's just so smart. HATE. BURNING IRRATIONAL HATE. LOOK. I KNOW THE SIGN FOR BIRD. LET ME SHOW IT TO YOU. IT'S ALL ABOUT THE FLIPPING WRIST ACTION.)
Anyway. I am really fucking grateful for you guys. I need to tell you that. I have read every comment. Every email. And I have repeated your stories to friends and family to help them understand what we're dealing with and read at least two dozen hundred of them out loud to Jason (who, if we may keep this between us, is fuh-reaked out and possibly had to leave work early on Thursday because he was so rattled, and my God, that man worships that child). You have helped us immeasurably.
I mean, have you Googled "sensory processing disorder toddler speech delay" lately? Have you seen the horrible no-good death-destruction-DOOOOOOM stuff that comes up? I understand it's a new thing, and still a relatively squishy kind of diagnosis, but my God, those symptom checklists? It's a wonder that ANY of us can get through the day without a temper tantrum because OMG CEILING FANS AND POLYESTER CLOTHING! I'M OVERSTIMULATED! I'M OVERSTIMULATED!
But I also understand what a relief it is to have something -- anything -- that finally seems to explain why your child is different. To look at the checklist and sense that satisfying *click* as your child snaps in like a puzzle piece. A diagnosis that "qualifies" you to get the help you need.
If Noah does have an SID/SPD, I believe it's a very mild one. We have the toe walking, the food texture issues, drooling and an increasing resistance to transitions. (Carseat! NOOOO! Out of the carseat! NOOOOOO! Inside/Outside! NOOOOOOO! Parachute time! AM GOING TO DIE NOOOOO!) We have a kid who is different, in ways I'm not sure I can articulate.
But mostly, we have a kid who desperately wants to talk. A kid who understands most of what we say and who doesn't understand why we don't understand what he says. A kid who is sweet and affectionate with everyone except that other kid on a playdate who knows how to ask for juice. Then he pushes. He hits.
The last 48 hours or so have been....weird, honestly. It's like someone just turned on the lights, and holy crap, they're 400-watt bulbs.
It's shockingly clear to me now that this is not temperament. This is not something he is just going to "snap out of" and start talking in sentences one random day. This is not something I am going to gamble with because I'm suspicious of all this "sensory" bullshit and whatever, in my day we didn't care if kids didn't start talking by age seven and also. Snow. Uphill. Both ways.
This is a blip. A trifle. This is something we're going to overcome.
I don't know what to say except that you're an amazing mother. I have been lucky thus far and not had to deal with anything like this, and I would only hope that - if it's in my future - I handle it as well as you have and am as proactive about it. And I would also be fucking mad, and that would be okay too.
Keep going, one day at a time.
Hi there,
I nanny two twin boys with sensory issues. They walk on their tip toes and were very very slow to talk and walk and just about everything.
They've been getting Early Intervention therapies for free from the folks here in NYC and I can't tell you how MIRACULOUS it is. They are almost three and just now are able to articulate specifics, form full sentences, answer questions correctly.
I'm not even their mother and I'm overjoyed at their progress! So, get in on that free amazing therapy and I promise this will all turn around! Best wishes.
These sensory integration issues? Mild autism, even? They tend to get better as the kid gets older. We learn to adapt. We start walking on the flats of our feet. We learn to tell you what we want. We learn to work with and around the thing that makes us different.
I mean, I did. And often, this learning to work around a "disorder" makes us more well-rounded, a bit more self-aware, and more compassionate to other people's differences.
It's not a guarantee, but it is hopeful. I believe that your baby is gonna be just fine.
My son also went through early intervention through our county run program, and I can't begin to tell you what a difference it made! He just finished kindergarten and officially "graduated" out of speech and occupational therapy!! WooHoo! I had a lot of the same questions as you did early on, and still wonder if he'd have done it on his own in time, but the bottom line was - intervention was free and he enjoyed it (it is a lot more like structured play than anything else) so why not???
Good luck to you - you are a terrific mom!
More hugs, more hugs, more hugs. For Jason (who presumably, as a guy, keeps all his stuff tightly locked inside his manly chest); for Noah (who is apparently going to have a wee bit of trouble finding the key to unlock his own little manly chest); and especially for you, dear Amalah, who have found your key right here: Ahug! for you, and thank you, for flinging your chest wide the hell open, and sharing its contents with all us imperfect strangers.
Okay, I would be freaking the hell out too. And flipping the bird to anyone who looked at me!! Because I would have read everything that WebMD and Google and all of the internet said about it and freaked myself into a major leauge tizzy. I probably would have done such a good freak out job that I would be hospitalized if I were in your shoes (Or at least heavily sedated and drooling down my chin.)
Maybe they are just making this "disorder" up to further freak us parents of toddlers out...I mean it really is a miracle that we survived this long isn't it? I hope that things get easier, and happier and back to normal - whatever normal is for you.
I still am convinced that you have a baby genius over there on the Right Coast that knows what all that shit is, but wonders why the hell he should waste his time answering you, when you already know the damn answer!!
Dude Amy. It sucks. It is your baby and ANYTHING wrong with YOUR BABY is the hugest thing that can happen to you. I've learned through all that we've gone through with my daughter, is that when it is your kid? It ALWAYS feel huge. And it doesn't matter than there are "worse things out there"...because this is real and happening to your baby, your heart. I try and keep perspective...but occasionally, you just have to let yourself feel like it sucks, because IT DOES.
And, therapy is amazing. It will be wonderful.
Really, feel free to email me about any of this stuff. It is all kind of overwhelming at first and finding someone who had been through it to talk to was really helpful. Among all of KayTar's many, many issues...delays and sensory issues are right up there. Tricky stuff. Or you can just look through my archives. Because I tend to talk about this stuff a lot.
Our neighbors have been receiving services from the same Montgomery County department and it has been amazing. Makes me proud for once of what's being done with our taxes- what a great resource for families in the area. Good move.
My dad (born in the early 1940s) was one of those children who didn't talk until he was seven. He's fine now, but perhaps his life would have been a little more *comfortable* if he had had access to some of the services available now for children with speech delays.
I know it's awful to be worried about your kid, and almost as awful to hear that you were right to be worried -- but this is a problem that has a solution, thank goodness! I'm keeping you all in my thoughts.
Amy, you totally rock, you know that? I don't care about the "pain olympics", as far as I'm concerned, if what YOU are going through is hard for YOU then YOU can post about it all you want on YOUR blog. And no one should be able to say word one about it.
I'm glad you're posting about this because how many parents go through this very thing? A LOT, I'm sure. And it's awesome to have another perspective on it, another experience to reference through their struggles. Early intervention sounds like just the thing and I'm confident that it will help Noah (and YOU) in the long run.
You go girl.
Wow. This is why it sucks to not have the internets for two months-ish.I have missed EVERYTHING.
I am sorry to hear about Noah. I would also be freaking-the-hell-out-full-on-panic-mode. But then I am rather dramatical myself. I know he will be fine, as will you. Well, given a little more time and maybe a lot of wine!
It sounds like all your bases are covered. Good luck!
You have every right to be fucking pissed...because he is your baby, and that's a Momma's job. If you need to scream and cry..do it...you can celebrate too once you see how much he can and will acheive!!!
Much love to you and your family...early intervention is the key, and you've got that going for you. ((((((hugs!!)))))
At 3 years, our pediatrician looked at my son toe-walking, and then listened as I explained that we couldn't follow his advice on potty training because MY SON DOESN"T MAKE FACES WHEN HE POOPS -- and we got a referral to a neurologist.
Dr. Google says very scary things about that combination of symptoms. But as it turns out, we have a kid with some sensory issues. Nothing ever officially diagnosed, nothing that rose to the level of getting EI. But yeah. We had the funny food textures thing, the toe-walking, wierdnesses around sound (NO SINGING EVER MAMMA), and a clear lack of sensation in t he lower body.
And you know what? It does get better. But it doesn't make those first weeks and months after the doctor says "Yeah, something's not quite right here" any easier.
Sensory issues exist on a continuum, just like anything else. Now that I've read up on them, I realize everyone I know has some - and several people close to me have a *lot* of issues - enough that they probably would have qualified for OT as kids. They are, as the funky freebirthers like to say, "A variation of normal."
And like you say, understanding that variation is a good thing. Realizing why your kid crashes into walls, or thumps his feet against the sides of his desk, make it that much easier to grit your teeth and be patient. It makes it that much easier to stand up to his 1st grade teacher and say "He's not ignoring you. He's just not aware he's doing it. Please keep reminding him, gently, and he will eventually get it. It takes him longer to get things about his body than other kids." Understanding him allows me to help others understand him too. And that's a Good Thing.
My BFF's almost-3 has THE. EXACT. DIAGNOSIS. Same symptoms, everything. She has made HUGE progess in the year or so she's been receiving services and she is on her way to 100% fine in every way.
Think of this as the first step in a journey of discovery -- discovering who Noah is, how Noah works and what works for Noah. Maybe it's not the road you thought you'd be traveling, but it's a scenic one with a great destination -- knowing Noah better!
From one mommy of a Noah with SPD to another...
Finding out anything is "wrong" with your kid sucks! But, aren't you a little relieved to know that there is a name for what you were concerned about? If I had a dollar for all the times I was told my Noah was "just being two" (which made me feel I must really suck as a mom if I didn't know that already) I could probably afford his therapy now! It's why I get so frustrated when I see people just trying to make other parents feel better, rather than aknowledge their concerns.
We are lucky to have early intervention available to us. I bet you will be amazed at how much improvement you will see in Noah in the next couple months.
And I bet in another week or two you will be an expert in all things sensory. I found it fascinating when I started to learn about it. Feel free to email me at any time if you need to talk, have questions, etc.
Big hugs, and know I'm thinking of you!
I don't have a lot of experience treating kids with sensory issues, but I have some. Okay, a tiny bit. And that tiny bit has made me realize that Noah's cohort is ever-growing. Our ability to pick up such things is improving constantly, and in the past, he might have had a miserable childhood as a weird kid. But now--they are doing such fantastic things for kids with sensory issues, you will be amazed at the simple stuff they do that really makes a difference. Oh--and--kids with sensory issues tend to be really really bright. But of course you knew that already.
Your friend is right, you have every right to be mad and upset. Sometimes the Internet is a great thing, in that you can find thousands of people who are going through the same thing as you, and you feel less alone. But you can also find millions of people who are worse off than you for one reason or other, and then you feel guilty for feeling bad about what is going on with you and your family. But really, if people were only allowed to feel bad or upset if they were in the WORST SITUATION IN THE WORLD, only one person, who just gave birth to a four-headed autistic monkey child who already has breast cancer would ever be allowed to feel, and that's just silly.
Good luck with everything, I'm sure you'll all come out fine. :)
Your reality is just that. Yours.
I have an eight year old that may or may not be Asperger's. And I felt the same way you do know when I heard that.
However.
It got easier. And we are dealing with it. Which gives me, and him, some form of control over it.
Good luck, mamacita.
Amy,
Have you had his hearing checked? Toe walking is not that unusual and what toddler doesn't have texture issues? Resistance to anything and everything? Hmmm....I think they might call that the terrible twos which become the equally horrible threes. I know that when you look at the collective symptoms, they seem to point to this sensory disorder but who knows? Maybe he is just speech delayed. My son is hearing impaired and before he was diagnosed, he was unable to make himself clearly understood. We were all in hell. As soon as the hearing aids were put on and he received speech therapy, his life and behaviour profoundly changed.
Listen to your instincts. They are always, always right. Nobody can say anything right now that makes the situation any better. It sucks when you've counted fingers and toes, had that sigh of relief and then run into something like this.
Good luck. I'll be rooting for you.
Our neighbors little boy has speech problems. Her pediatrician kept telling her to just "keep an eye on it, don't panic, nothing to worry about, he'll catch up." All those lovely things. So she didn't panic and she just let it go. Now she wishes she would have...just a little. Turns out he really does have a delay and it's going to put him in the "special" class this fall in kindergarten. He is catching up, but early intervention would have done wonders for him.
I know there's nothing I can say to really make you feel better but know that I'm sending you good thoughts and virtual hugs.
Ooh! Ben Folds! Love!
Thinking of you and Jason and Noah.
Amy, I have no stories or advice to share. All I can say is, I think you have the exact right attitude in facing this issue, and that Noah is so lucky to have these two crazy parents who are going through emotions from one end of the spectrum to the other in trying to do the best they can for him! You are spot on - things will be fine - but I'm thinking of you, I'm cheering for you, Jason and Noah.
Amy, everything will be fine. My dog's vet, who is uber interlligent, practices holistic medicine, got pregnant at 43 . . .she thought she was in menopause. Her adorable baby, who is now an insufferable 4 year old, didn't talk until she was 3 years old. The kid was mute, then used sign language. My vet, Deb, said "she'll talk when she's ready, I'm not too worried about it." Now, the kid won't shut up. I think doctors today are too quick to put a label on kids. Noah is absolutely adorable, you and your husband seem like great parents, and I'm sure everything will work out fine.
Amy,
You are allowed to be upset about the way things are. You are grieving the loss of your dreams.
If it is the case that Noah has some issues, you're catching them VERY early. Odds are in your favor and the county you live in is VERY good with these services. (BTW, Frederick county? Most excellent with my son's diagnosis of Aspergers, SID, OCD, and ADHD. Even better with educating him)
Take the time to be upset, disappointed and sad, because it will help regroup and focus in the near future. Posting is therapeutic-heck, that's why I started my blog. Let it out-you'll be surprised at how many others have walked a mile in those shoes and can help you navigate the path you're headed down.
I wish I was still up there in Maryland, if only to come sit down and be the person to listen to you vent (and have you open a bottle of champagne with the sword, so we can drink while conversing about it!)
Hang in there. Six years ago, I thought my world was crashing around me when we heard the word's "Asperger's Syndrome". Things are different than I thought we'd experience life, but I wouldn't trade this guy for anything. He's taught me so much.
My son has sensory issues and is also in speech therapy. He was similar to Noah, in that he learned words and simply forgot them or shortened them. He couldn't eat table foods until he was 18 months because of sensory problems. It would just gag him. At almost 3 I went in for help (kicking myself for not going sooner). We got him in early intervention and he has spent the last 2 years in special needs Pre-K. I was like you, trying to be ok with it since it is something that can be worked through, but at the same time mad as hell and just plain scared. Now, 2 years later the child can talk your ears off. He'll start Kindergarten in the fall on the advice of his teachers, but he will still receive speech therapy and some occupational therapy to deal with his sensory issues. It all has gotten SO much better. Hang in there :)
Haven't stopped thinking about you. Glad you posted today. You'll work it out, girl. You're on track. I've been there. It'll get better. And then you'll feel the good times more deeply than before.
I started to say this in my earlier comment - then deleted it - then changed my mind again. Can't stop myself.
If no one has yet told you this. On your assessment day, it's better if Noah's not having a great day. I feel bad offering such manipulative, deceitful advice. But when I went through my version of this, other moms told me the same thing. And it helped. So I'm passing it on.
At this stage of the game, you want him to score poorly. I know that's counter-intuitive. But the "worse" Noah does at assessment time, the more help you will get. Whether that translates into hours per week of therapy or different kinds of therapy...no such thing as too much help.
So, if you have any control over it - maybe try to get an appoinment later in the afternoon - no naps - no snacks or juice while you are waiting. God, I sound horrible. But it's for his long-term benefit. You don't want to set him up for success on this onee. You gotta work the system. Just sayin.
Amy, you are a great mother, and I admire your honesty in posting such great things on your blog. It helps us all. I'm rooting for you and your family.
Amy-
It is so hard hearing that your child falls out of the "norm" in some way. (My number one has been my training wheels in that department). I can only say that you are going to adjust to this bump in the road, and that really, it is to your advantage that you have already learned that when your mommy-radar is vibrating it is worth investigating. You should give yourself a pat on the back for being such an intuitive and thoughtful mommy.
As a former Kindergarten teacher, I cannot stress enough how much I believe in Early Intervention. It works, the earlier the better. Free services can sound a bit nervous making, but what I have found is that most people who sign on to work with little people are really eager to have your child succeed and will cheer Noah on every step of the way.
Raising child(ren) is a roller coaster, (sorry for the platitude, but it is true) and the highs and lows set parents up for every emotional experience under the sun. You and Jason are both doing what you need to do to digest this new information about Noah, and that takes some adjusting, no question. You and Jason and Noah are just GREAT! And well on your way to being over the bump (and ready to face the next one, whatever it may be).
In my experience, all children develop and mature in fits and spurts, and that when a chld has an area that they struggle with there is often a corresponding strength in another area, which may or may not be immediately apparent. (Not too reassuring when you are focused on the things that are "wrong" with your child, but there it is...)
Anyway, I am rambling, but I am thinking of you and thankful that you are sharing your story so articulately. You are very brave and Noah is lucky to have you.
I just want to hug you (but not in a creepy way). I admire your ability to put things in perspective AND honor your freak out--I have a tendency to either fly into full-on lunatic drama queen mode, or I stuff it all down (usually with a big piece of cake or a Starbucks muffin) and try to pretend nothing is wrong.
I wish your family only the best on this (hopefully short, blip-like) journey through this experience.
Hey - I looked up the signing time videos on YouTube to see if Mallaika would even watch them, she immediately started signing for "more" and "milk" I mean, I am sure that its a fluke, but hey - she turned around, handed me her cup and signed milk!
Amy, I know & you know that this too will pass - just a blip.
*And I love the signing time videos already
I know I said this to you in an email (and if I am one on the "wonerful" internet strangers you are refering to, thank you, that is totally unneccesary), but the infants and toddlers program is fabulous, and free. You will love Noah's speech therapist, if for no other reason, she will play with him and you can go in the other room and get work done, or take a shower. No, really, you don't have to be in the room the whole time. In fact, I don't think they want you to be.
It's going to ok. Noah is going to be great. And please, email me anytime.
I just love you and wanted you to know that.
(And there are other things that I want you to know, but mostly I just love you and am thinking of you.)
You caught this blip early and you are on the right path to really knowing Noah as a little person who will be able to express himself. Good luck with early intervention and may the therapy be able to start immediately. You have every right to freak. Just know that it will all work out.
I want to wish you a speedy trip through this scary time. Because once Noah starts therapy and you have a path to travel it will seem so much less scary.
When my youngest turned 1, her pediatrician told me she had stopped gaining weight and fallen off the growth charts. In the 3 months since her last visit, she had gotten taller, but not gained an ounce. I had just weaned her, in anticipation of starting whole milk, and I was initially upset that I had to go out and buy formula. "But, wait," the pediatrician says. "This is a much bigger problem than just keeping her on formula." And, then the tests began.
Holy crap! It took mommy nerves of steel to hold her down for needles and catheters, and when the nurse said, "I think we should try the smaller needle" after 3 failed attempts to draw blood, I thought I was going to be arrested because I was certainly going to put the next needle into her own arm.
Then the tentative diagnoses with the scary words: acidosis, impaired kidney function, lifetime medications. And, then, just when you had begun to wrap your mind around all of this and can see yourself on this path of doctors and hospitals and monitoring (because, after all, it's not something like cancer - this really is MANAGEABLE), the specialist won't see you because your kid is not "sick enough" to qualify for the diagnosis!
Just when we felt like we'd been whipped back to the beginning of a bad roller coaster ride, she starts growing again. Like she'd never stopped.
And, when we'd gotten a little distance from the whole episode, we joked she'd be our supermodel retirement plan (she was 90th percentile in height and 10th percentile in weight).
And, now, 3 years later, it takes an essay like yours to remind me how awful it all really was. I sincerely hope that in 3 years you, also, have trouble recalling how upside-down your world feels right now.
Your friend was right about it being okay to get mad. This has (at least temporarily) changed your world and what you expected your world to be. Just because there are people who have it worse than you doesn't minimize the impact this has on you and Jason. You definitely need to allow time for you and Jason to grieve. ("Grieve" may not be the best word, but hopefully you understand what I am trying to say)
Then you need to do just what you are doing -- get informed, put together a plan of action and do your level best to help Noah do and be the best he can be. Because that's what we do as parents. And you and Jason are amazing parents. You love that little boy with every fiber of your being and there is nothing you wouldn't do for him. That, my friend, is going to make all the difference for Noah.
I'm betting you will both enjoy the time in therapy. There's nothing like someone totally focused on your kid, cheering him on, and celebrating his successes.
I think I know exactly how you feel. Like your parental innocence has been cruelly violated? Yeah. I've been there. I don't think I handled it as well as you. It does get better. It's a process. Actually it's all about processing that process, if you'll indulge me a little word play.
Hang in. The initial sting will pass. Then sting again a little. Then pass again. But you're all going to be fine and perhaps even better for it in the end.
I do not have any experience with anything like this. But I am a mother. And I have been reading about you and Noah for so long. You are an incredible mother for knowing him and knowing how he is struggling and needs help. You are such a good mother. And Noah is such a lucky kid.
my friend has a kid with sensory issues...that early intervention stuff is fucking awesome. i'm glad that you're taking the time to be mad about it, it's hard to do that sometimes.
you love your kid, obviously, and you are doing right by him. you will absolutely overcome the blip. rock on, sistah!
Amy, I just want to say that you are such a good mom to your son, and you're so awesome and brave for talking about this stuff. *throwing you the goat, right now*
I don't know why it's not okay to be completely and totally upset and freaked about something without someone screaming "NO ONE DIED. SHUT UP. COUNT YOUR BLESSINGS."
Those people should be poked with very tiny needles over and over again.
DUDE. This is your kid. This isn't a tiny deal, this is something you have to deal with, and you have every right to be scared, upset, whining, carping, whatever, pretty much 24-hours per day, and the fact that you're not is beyond remarkable. So the blessing-mongers can stick it.
You're a great mom, and I'm very grateful that you're sharing this with us. Thank you.
Amy, there will always be a sadder story out there than yours. However, it doesn't make yours any less valid! You are Noah's mother and you simply want the very, very best for him in life. Which is precisely what being a good mother is all about.
The important thing is that you are getting information to help you make decisions. I've seen folks live in denial on issues such as these thinking it will "work itself out" while their child continues to struggle. Thank you for posting about this experience. Thank you for getting the message out there that it is indeed best to push forward, even when facing a possibly scary truth. You have a voice and people listen. This is why I refer to bloggers such as yourself as "power bloggers" - you have a power to get people listening. Thank you for using that voice to help others.
Peace and hugs.
I have two boys. Both of them are blabbermouths. Both of them are brilliant. I dreamt last night of a baby daughter. She was perfect. Sad part is, I will have no more children. But in my eyes, she was perfect. That is all.
Thanks for clearing up about the earlier posts. Hope Noah likes the Signing Time videos!
Coming out of major lurkdom here to say a very few words.
Educate yourself, read lots, ask lots of questions of people who have been there, who have background and then form your own plan based on who your child is.
Don't let yourself or Noah get "pigeonholed' by the name of a syndrome, the list of symptoms, or any other label. Noah is your son...that's the only label he needs.Don't let him become 'NoahwhohasSID/SPD'.
And finally (this turned out to be more than a few words) he may not grow out of it, but you and your husband and Noah will all GROW WITH this and learn to adapt and be happy with who you are.
Amy,
I'm a pediactric speech pathologist, and I work in EI services.
I would take any labels your general ped. gives you with a grain of salt. As helpful and knowledgable they can be, they generally have less than a DAY of language instruction, and even less than that on sensory issues. SPD is a BIG diagnosis (which is hotly debated and one of the "popular" labels around now), and there are all kids of degrees of sensory "issues" leading up to that. Heck, I have sensory issues! Try not to get hung up on a label prior to talking with the intervention team.
FWIW, based on the limited info I've got, Noah sounds like he's in pretty decent shape to me. It's MAJOR that his receptive (understanding) language seems to be age appropriate. Hopefully, all he'll need is a little support to get him moving.
I wish I had more concrete info to offer you. If you have ANY questions at all, please don't hesitate to email me.
Amy, I'm glad you posted. I was actually kind of worried about you.
I hope you got my email.
You're off to a good (no, make that great) start.
It's okay to be mad too. I was. Tell Jason it's okay to be freaked out, too. We were.
You guys are great parents, and Noah will be running sentence circles around you in no time.
My son was waiting until he could speak in sentences before he spoke. Maybe Noah is too.
Ya'all are in my thoughts.
Shash
ok. this was me/my perfectly delicious son 7 years ago. speech delayed. labels labels labels. me, angry,hurt, upset, worried.. oh woe is me, why me. all of it. we did early intervention..they do all these fun little tests..he was SUPER social, he knew what they were asking him, he just wouldn't tell them, not COULDN'T.. he WOULDN'T. we did the sessions.. and then when he turned 2.. a little over.. WHAM! his words started spilling out, and well, he's going to be 9 in August..and atleast once a day.. i pay him to SHUT THE HELL UP! this is your boy, and it's upsetting and exhausting - I just wanted to tell you that I too freaked at every possible WHAT IF.. best of luck!