Oh, just...BAH
November 20, 2008
First, the insanity report: I took both boys to the doctor's office today for check-ups. Approximately seven hours later I emerged from the little exam room, only to smack face-first into a wall, probably from a combination of plunging blood sugar* and the disorientation that comes right after one loses one's soul, as mine flew out the window sometime around the moment right after both boys had their meaty thighs stabbed with needles and started screeeeeeeeeeaming and screeeeeeeeeeeeeeaming and I figured WHAT THE HELL, LET'S BREAK SOME FACIAL BONES WHILE WE'RE AT IT.
*My plans to eat lunch before the appointment** were derailed by a leaking poopy diaper, of the Turn This Car Around And Head Home, Oh My Hell Variety. I grabbed a half-empty and fully-stale bag of chocolate graham cracker bears in a panic since I did That Thing you're never supposed to do, That Thing Where You Leave Your Toddler In The Car While You Run Inside To Change The Baby's Diaper Real Quick But Then The Baby Pees On His Head And It All Takes Much Longer Than You Planned, but then Noah ended up demanding most of the chocolate graham cracker bears, which I served to him in a plastic snack cup I found under the driver's seat. Man, I hadn't seen that snack cup in like, a good six months.
**The appointment was at 1:45, or so I was told by our appointment card AND when they called to confirm yesterday, which was when I was also reminded to arrive 15 minutes early. So I did. At 1:30. When I was told that no, our appointment was at 2:00, but you know, they sometimes bump the appointment time up by 15 minutes to ensure that you do truly arrive 15 minutes early. Good luck trying to point out the flaw in that math there, for future reference. Just sit the fuck down and watch PBS Sprout for a full half hour while dreaming of the bagel place across the street, but WHATEVER, you have TWO CHILDREN NOW***, running across the street for a bagel will take 45 minutes and two additional wardrobe changes, at least.
***I had a lot more getting-out-of-the-house-related whining things to write about, but as we were leaving I watched a woman get out of the elevator with her three-year-old daughter and newborn twins. That made me realize that hey! I should totally trying shutting up every once in awhile.
***
Second, the Ezra report. He now weighs 10 pounds, 7 ounces and is 23 inches long. 75th percentile for weight, 90th for height. 100th percentile for absolute perfection.
***
Third, the Noah report.
Oh, Noah.
You have my permission to skip the next bit, particularly if half-formed, reactionary tantrums of misplaced rage are not entirely your thing. My anger and sorrow are kind of still shooting out all over the place, probably missing the proper targets, fizzling out like my hair is made of stray electrical wires.
Noah's speech and sensory delays -- you know, the ones our county told us were All Good, All Fixed, Bye-Bye Now! back in June -- now appear to be bordering on "severe."
My final conversations with Early Intervention went something like this:
"I'm still REALLY concerned about his articulation. He's still REALLY hard to understand."
"Pish! And posh! His pronounciation at the single-word level is just fine! His combinations will catch up with practice. Calm down."
"Okay, so...what about the sensory stuff?"
"Mere quirks!"
"Should I be concerned that he can't drink from a cup? That he can't use a fork or a spoon? That he still screams when you brush his teeth or touch his ears? That he won't eat anything other than bread? That he'll go a week without pooping, just because he doesn't want to?
"Look...just...whatever, okay? He's not autistic. It's not apraxia. It's not nearly as terrible as the terrible things we deal with everyday. Can you just sign this paper so we can free up some damn resources already?"
Obviously, today's appointment was just with a pediatrician. It wasn't a formal evaluation or anything. But, still. I trust our pediatrician. I saw the relief in her eyes when I brought up Noah's speech and oral-motor issues first. I saw that look of, "Oh, good. I don't have to be the one to break it to her."
A stranger or non-parent should be able to understand about 75% of a three-year-old child's speech. That's honestly a more than I can understand. I translate constantly for his preschool teachers, and our doctor admitted she was catching maybe about 25% of what he was saying.
His reaction to having his ears examined was...extreme, so say the least. Violent. Thrashing. The very reason, I admitted with shame, that I haven't even considered taking him to the dentist yet. I can't even IMAGINE taking him to the dentist yet.
One week ago, to the day, Noah drank out of a cup for the first time. A cup! Without a spout or a straw! We'd been sending in plastic straws to preschool for months, once it became clear that Noah was willing to let himself dehydrate rather than take a sip out of a small plastic cup like everybody else.
"See?" I told myself last week. "All good! He was just being stubborn."
The fact is that I've seen one-year-olds handle an open cup with more skill than Noah. Stubborness may be half the battle, but the other half of the battle is...God, I don't even know.
Our pediatrician is recommending we seek a private evaluation and therapy this time -- that again, Noah is probably a little too borderline to qualify for the level of service he really needs through the county. (We'd be dealing with the school district this time, now that Noah is three, which does indeed have a higher bar for needs-based services, and also would mean Noah would be officially "labeled" as special needs in his permanent school record, or something. I forget. Early Intervention covered all of that the week AFTER they told us Noah was ready to graduate, so...yeah. I probably spent that session counting ceiling tiles or doodling "Mrs. Zac Efron" or something on my binder.)
But it's crystal clear now -- and I knew it but I didn't know it or maybe I just didn't want to know it -- the progress we achieved this past year was good but not enough, and we're not out of the woods yet. Wow. That's an exhausting thought, especially when you consider "four straight hours of sleep" downright luxurious these days.
So...I need to check our insurance, cross-check therapist recommendations with our insurance, make appointments for evaluations, take Noah to an audiologist, dig out all our Early Intervention reports and assessments and basically get ready to start everything all over again. And try to stop beating myself up too badly for letting things end at all, in the first place. For wanting so badly to believe that things were fine and fixed and over, for constantly giving things "one more month" and "a little more time" in hopes that it would all work out on its own, and for -- goddamn it -- letting Noah down and not getting him the help he needed sooner.
Don't beat yourself up. They were the "experts" and when "they" tell you it's okay...you trust them. You are an amazing Mommy, and Noah is an amazing kid BECAUSE of you, not in spite of you. Just keep looking forward and KNOW, that he WILL get the help that he needs, and he WILL be okay...YOU CAN DO THIS!!!! ((((Hugs!!!))))
Don't beat yourself up! The "experts" were telling you all he needed was time! Sure, mommy instinct and all that is great, but it's sometimes hard to doubt so called experts.
It's never too later. Noah will get the help he needs and it will be ok.
(Oh, and I only just took my 3.5yo to the dentist for the 1st time and only because I thought she'd broken a tooth falling. If there hadn't been blood we would have totally waited... uh... until there was blood. Or something.)
Bwah Lori and I dissing on the "experts" at the same time. heh.
Don't be so hard on yourself. You are a great mom.
Please feel free to e-mail me if you have questions about the school district's evaluation/identification process and how it's supposed to go. I practiced special ed law for 11 years and would love to help you.
And don't beat yourself up!
Take a few minutes while your in the bathroom because I know that's about the only time your alone right now to breathe in the fact that you didn't ignore the sensory issues when you had a listening ear in your peds doctor. There is a difference between ignoring a problem and being uncertain. You've done the very best you can with the information you've had at the time, operated in a situation that is not entirely in your control with early intervention and most importantly you continue to advocate for Noah.
Oh, Ahmala, cut yourself some slack. You are doing the very best that you can, under the circumstances. You have not let Noah down. You are taking the ball and running with it again. As parents, we try to juggle a million things at once and we sometimes wish that what our gut tells us may be wrong, in fact actually wasn't. We tell ourselves that we should relax and that things will work out, but we can be wrong. The important thing is to have a plan. You seem to have just that. Noah is lucky to have a mom like you. Take a big breath, relax, and eat that elephant one bite at a time...
I'm so sorry you're still dealing with all of those frustrating issues with Noah. I'm an OT student and am just now starting to work with kids...and it breaks my heart to daily see the frustration in a parent's face when things like this happen. :(
I'm here for you, whatever you need. But you already knew that. Just Bah.
Amy, please don't beat yourself up over this. You're Noah's mother and your job, first and foremost, is to love him and that you do perfectly. As a parent, it's easy to overlook certain things because you deal with them everyday but that doesn't mean you let Noah down. The 'system" is just fucked and they don't make it easy to qualify for services. Remember, earlier this year I jumped through a frillion hoops to get my son, also three, into a preschool program in the school system so he could get the speech therapy he needs. You're doing everything you can do AND you have a baby this time around. Be kind to yourself.
Ugh what a lot to deal with especially after you think you're DONE with it. My stepmother is a SLP, she probably can recommend someone in the area if you want, just let me know.
Aww, damn it!
I had the opposite problem. A hyperarticulate kid who was hitting all the Denver milestones early. Pish Posh to my suggestions that something was 'wrong'. What did I know? I was a first time mom. (Never mind that I had many nieces and nephews).
The good news? You're on top of things. Yes, it's hard with a 3 yr old and a newborn but you know what? You will get it together.
I'd drive down from Frederick to Children's, because there are some awesome Developmental Pediatricians there. (Email if you want more detail).
As far as dentists and new experiences, google 'social stories' I'd heard of them for years, but recently started using them with my 12 year old. They help. A lot.
Hang in there.
Okay dude (I feel that now that I've left like 3 comments, we've progressed in our relationship to where I can call you dude. You, OTOH can call the police if you think I'm a stalker.)...stop, please oh please stop with the guilt. You had early intervention with him, EARLY for heaven's sakes. You've followed their advice. You're doing the best you can, and oh yeah, maybe you've been pregnant and just had a baby??
You absolutely ARE getting him the help he needs. We, every single one of us, want to believe that our kids don't need help. And lots of times they don't. Lots of time, problems sort themselves out. I figure (based on having a 10 year old with many a sensory issue, 2 eight year olds (twins -- gah! See it does get better!) and a friend whose child has apraxia, is in my boys' class and doing GREAT) that a great deal of this will sort itself out too.
I read here enough to know beyond anything that you guys are great parents and that Noah is a bright and wonderful kid. This stuff will get better, with some expert help. Having to seek some help for my girl (and much much later than you -- she was 8 1/2) -- my only advice is to follow your gut on the experts. If you think that someone is either and asshat or too stupid to cross the street -- you're probably right. There are wonderful wonderful experts out there, and now that we have a little cadre of them, life is so much better. As to the eating and oral defensiveness stuff, I have a great name of someone in Columbus, OH if you want to e-mail me, if she has any recs. for someone in your area. I've just been talking to another mom via the internets about this, but all I will say is that age is your friend. The older he gets, the more it's going to get easier. And good diagnosis and the right help will give you space in your chest to breathe. I promise.
Noah is wonderful (and I don't need to tell you that), and he will grow up to be a lovely man who drinks from a cup and talks fantabulously. In large part because he has a mom who cares, who will seek his best, who will always take the next best step she can. Don't beat yourself up, dude.
And feel free to e-mail if I can be of help.
You are a mama bear! You will get your strength, when you feel you have no more, from all the mama bear energies that are floating around in space!
Really, don't let the motherhood guilt train run you over, sweetie. You KNEW, even when the experts said otherwise. Give yourself a break, and Noah a hug from all of us.
You didn't let anyone down, especially Noah. The break was probably good for him. It's just time to start up again.
(Please pardon the upcoming familiarity but I can't help but think you need to be called endearing names and patted on the back and handed a cookie right about now.)
Oh, sweetie. You and Jason are NOT to blame for anything. You are doing your best, more for your kids than most people do. You will find someone to help you and Noah and things will get better. They really will.
Saying a prayer for you all right now.
My nephew had many similar problems that Noah is having. My sister has him in speech therapy, OT and a few other things. He is has improved so much that he started kindergarten with the "regular" kids. A lot of your feelings are near identical to how my sister felt. Hang in there it will get better.
Do not beat yourself up for letting Noah "graduate!" I'm not a parent, but if I was dealing with someone who was supposed to be an expert, I'd believe them when they said things were fine. The fact that you brought it up to your pediatrician, and are already thinking of the next step shows that you're a great mom.
And the dentist thing? I didn't go until I was six. I asked my parents to go. Don't even worry about it.
I'm so sorry you're dealing with this when you're still getting used to dealing with both Noah and Ezra and not getting any sleep. If I lived anywhere near the DC area, I would totally offer to babysit just so you could nap, or get out of the house, or just have some "Mommy Time" with a bottle of wine and a book.
My son is 9 and we are STILL figuring out his sensory issues-because the pediatrician dismissed all of my concerns. I get what you are going through.
You are Noah's best advocate and thinking that maybe things would work themselves out is what all mothers do - until you can't anymore and act on your instincts. Plus, um you were gestating Ez. Now you have a plan and Noah will be fine. The internets are behind him 100%.
Amy, I am right there with you. Your life is eerily like mine. I've got a 6 week old little boy, my daughter is almost 3 and has a pretty solid speech delay and some sensory stuff that is kind of strange. We too ended therapy (in my case I skipped EI because we were only offered 30 minutes of speech A MONTH) last February when we were told she was doing well. Preschool started up again this fall and her teacher kindly pointed out that no, she is nowhere near caught up. Which I knew but I think I was hoping she'd catch up on her own. So were back in therapy and dealing with the sadness and overall frustration this stuff causes with a newborn has made it all the more emotional. Oh, and we had an ENT followup on Monday that included violent thrashing when it was time to look in her ears so I TOTALLY know how that goes.
So no words of wisdom, just complete commiseration.
There usually are ways to get services through the school without a permanent label. For our son, he qualified for preschool and OT services under "Other Developmental Delay," officially for fine motor skills, but the OT incorporates sensory issue stuff too. In our district, it also gets easier to qualify for things once the kid hits 5. We are just about to get him some social skills/speech therapy because he barely qualifies on articulation issues. In a lot of ways, we're using a foot in the door to get them to focus on the things they don't officially recognize.
All that aside, the best thing we did was private evaluation and OT when he was almost 4 and nobody else was worried and we were looking at a year wait to get a serious look.
i know it's hard NOT to be hard on yourself, but try. you have two perfect little boys. perfect. perfect. PERFECT.
I'll save you the touchy-feely support crap - although you deserve it - because everyone else has it covered. Just want to tell you how I snorted Sprite out my nose when I read "Mrs. Zac Efron"!!!
I will email you the name of an audiologist in your area that comes highly recommended in case you haven't found one yet.
12% of school aged kids are now labeled special ed. Don't worry about that part. We're in an elite club; I like to call it, "Look at me, spending all your tax dollars. :p!!!" It's no longer like when we were kids and there were 3 special ed kids in the whole school and they were in a windowless classroom in the school basement and everyone always peeked in when they walked by because they were curious.
And sorry about the poop. I know that's enough to send me over the edge.
Personally I haven't driven my car in 6 days because of a projectile vomit issue. Heading to detailer tomorrow.
I wish you luck in the situation with Noah. A friend of ours is currently going through the same thing. He just got diagnosed in May, after 18 months of fighting for a diagnosis. They fought even harder than I thought they should (the doctors, not the parents), considering the child had been born at 28 weeks. That early put him at high risk for autism.
I worked in a pediatric therapy center for years and would never discourage anyone from seeking out private services (especially if insurance will cover it) but please don't be concerned about being labeled in the school district. He'll only have any sort of label for as along as he requires any services and privacy laws dictate that special needs status can only be shared with people who really need to know. It's not anything that would hold him back.
I've been putting off calling Early Intervention for a month now. But I think I'll do it tomorrow. If for no other reason than yours - because my kid deserves that from me, and because I'm not qualified to stand in as the expert on what he needs.
Now that Noah is 3, IDEA (Individuals with Disabilities Education Act) mandates that his needs are not just "labeled," but MET. It is the law. Period.
Contact the Special Education Office of the public school district that Noah would/will attend. They should be able to get you started.
Let me join the chorus of Don't Beat Yourself Up! I am personally aware of parents who, back in the dark days of the early 80s, ignored kids with screaming neon issues way beyond Noah - and you know what? The kid who freaked me out the most when I met him at 4 years old because even my casual contact with him made me think neurological issues, who spent the next decade with a mother in denial, that kid finally got proper attention in his teens and runs his own company today. Noah is a wee preschooler. Intervention now IS early intervention. You have not missed any boats. Leaving it until freshman year of high school, that is missing the boat. But even that kid is okay now. You good mom. Have a cookie.
For what it's worth (which is probably not very much, because this is about 10th-hand and not applicable to toddlers, but I want to join in on the fun) my sister-in-law renews my middle-school nephews disability paperwork with the school every year even though he has never had to use it (he's a very good student, actually), but if a point in time comes along where he can't handle things the stuff is already in place. She also has an autistic son that she's had to fight for school rights for, so she knows her stuff. And you're an awesome Mom and totally my role model for the Hedgehog that will be here in February.
Ugh, I am so sorry. Please don't beat yourself up - you should be proud of the excellent care you've already gotten for Noah and will continue to get during his next program.
I know - I know how hard it is to have a child with "borderline" issues. I've been down that road, albeit physical therapy, and it's not fun. It's scary, and hard, but you are Noah's mommy and the one who knows best. You'll get through it, again, together.
Oh dear. It is clear that you are doing the best you can with the information you are being given and the resources that are available to you. You are a good and caring Mom, that much is obvious! Don't beat yourself up (if you can help it). I hope you can find a good therapist to help him out. I'm just starting down the road of EI for my 2.5 year old with speech issues and I'm hoping that it won't be too complicated!
And. I hope I'm totally not being THAT MOM when I say that OMG my son was heavier than Ezra is now AT BIRTH (10lb. 120z.) and nearly 23 inches, too! If that's 75th and 90th percentiles at one month I don't want to think about what percentile my my ginormous baby was!!! (250th???)
Please please please don't beat yourself up or think that you've let Noah down. You're doing a great job from what I can tell through my computer. When someone who is supposed to know tells you your kid is o.k., why wouldn't you believe them?
I'll be thinking of you and your little family and hoping good things happen with Noah.
Oh Amy. I'm sorry you're feeling so frustrated and overwhelmed. I'm sorry poor Noah still needs this help at all. I'm especially sorry for the timing, because WOW does that suck.
But honestly? I've read every one of your posts. I remember when Noah first started going for speech therapy and when he graduated... and as a (mostly) impartial bystander? I really, truly think you are a supermom. I think you have been 150% there for Noah from day one, and I know you always will be. There's nothing wrong with hoping he'd get past the last of it on his own. You haven't let Noah down at all.
I know it sucks for you to have to start this up again. I really feel for all of you. But I know you will get through it. You're a wonderful mom, and you can handle this. Noah is lucky to have you.
Amy, dude, I just want to reach out and hug you. You didn't let Noah down at all - you trusted the experts as we've all been taught to do.
Just last month I had my old, now new again pediatrician point out that Cordy's previous ped totally missed all the signs when she was two years old. We could have started therapy a full year earlier had that doctor cared to look at her charts and our concerns.
It happens, but you're still advocating for Noah. You brought it up at his appt., and you have a new plan in place after the EI folks blew you off. And now that he's three, I'd go ahead and try for the school district eval. too. They might actually work out for you, and save you a ton of money. (Plus if you're worried about him being labeled in his school file, know that many schools will let you seal the records if he starts kindergarten without an IEP, so no one will ever know unless you want them to.)
You're doing great, and Noah's lucky to have a mom like you.
No matter what goes down, Noah will come through! You cannot ask more from yourself than you are able to put out... Those dooshbags who evaluated him told you he would be fine and, as far as you knew it, they were professional experts! Nonetheless, you trusted your instinct and brought it up with your pediatrician... that makes you a real mom... one who observes and worries!
Noah will pull through!
Well, cripes. I don't have anything to say that hasn't already been said more eloquently by another commenter, but this post required some commiseration. Since I can't think of anything helpful to say, I'll be over here in the corner kicking the wall in frustration on your behalf, okay? Okay.
You're doing great with Noah, I think it's normal wanting him to be "all better", but it's ok to need more help than you planned for. You are getting him the help and attention he needs. My sister waited til her boy was 4 to start speech therapy-he talked all the time! but no one could understand much at all. I saw him for the first time in 6 months, and it's amazing what a vocabulary he has now, and may have had for a while, we just didn't get it. He's so much less frustrated too, doesn't have to repeat himself to be understood.
Oh sweetie, your mommy's intuition was better than the county's. But you are doing the right thing in getting him the help early on. It is hard to feel like your child will forever have this label following him, but as I like to remind myself all children in their own unique ways have special needs. I was told at our last IEP meeting that my ds would be lucky if he could trace a lower case h by the end of the year, well we pulled him out of a regular class and put him in a class for children who were midly impaired and now he is tracing almost all of his upper case and some of his lower case letters on his own. Some kids just need more one one one than others. He is learning what he needs to just in a different way that works for him. I am sure that Noah will get the care that he needs because he has wonderful parents that have his best interests at heart, but I know this can't be easy for you, especially with a newborn, so sending you lots of virtual hugs and best wishes. Please let us know how everything goes.
Been there, done that, HANG IN THERE!
The mark of a good parent is beating oneself up. That's what I tell myself when I beat myself up. I've met parents who don't beat themselves up, who think they're doing everything right, and let me tell you, those people are scary and I feel bad for their children. Those are the people who would never have gotten Noah any help for the past year and probably never, ever would. You've done the best you could, and you will continue to do so. So, so, so many kids wouldn't be getting any sort of help at this point. Noah is a very lucky little boy to have a parent like you.
Absolutely do not blame yourself for one second. The people who said Noah was ready to graduate are the ones to blame. This is THEIR area of expertise, not yours. You have learned so much about this but are still learning. You don't have a degree like they do. You were told that it would all come together in time and you gave it time. And now that your doctor recommended a new course of action you have already taken steps to get the ball rolling.
Should you have asked these questions sooner? Maybe. Were you given a time frame as to when it will all come together for Noah? I don't know. What I do know is that you and Jason didn't decide Noah was ready to be finished. You were told he was finished and I'm not sure I think arguing the matter would have changed their minds. But I do know that you will never stop until Noah has achieved all he is capable of.
Early Intevention sucks @ss. Period. They told us the same thing, bunch of idiots. I finally got my 3 year old in preschool this year and evaluated by the state. Sure enough, speech problems and he is behind. Do you not have a state supported program that wouuld evaluate him at school? Drew receives therapy once a week at school, for an hour at a time. He's already improving.
Keep fighting and don't feel bad. I believed EI knew what they were talking about and that WE were just being paranoid. I got over the guilt, too much else to worry about :) Good luck!
i'm sure everyone up there has been reassuring you. You are not to blame. You would be to blame if someone told you there was a problem and you ignored it.
You are an excellent mother. Never forget that.
Efron, huh? I pegged you for a Jonas groupie. Man, was I wrong.
My sister went through a lot of these issues when my nephew was diagnosed with ADHD, completely different from SPD, but still serious. She beat herself up about not getting help sooner, not forgiving all the signs and symptoms she hoped he would grow out of. But she was at least doing something to get him help, just like you are. Amy, you're a wonderful mother, which is the reason most of us flock to your site. You're also human. It's okay to forgive yourself. You're working on getting him the help he needs. That's one hundred times better than those parents who continue to live in denial.
Don't beat yourself up you did not let Noah down. You are now getting him the help that he needs. You listened to the specialists and now you are doing what you know is in the best interest of your son and getting him help. He is going to do great.
Okay, not even attempting to read the other comments, but here's my 2 cents.
You are such a good mom. IN NO WAY have you let Noah down, so let's just hop right off that guilt train, okay? You did what you thought was right, BASED ON REPORTS FROM PROFESSIONALS, who are supposed to know a tad bit more about these things than us regular mommies encountering this terrifying crap for the first time. But now that you know, you are taking steps and making plans and gonna "git 'er done!" Noah will get the help he needs--maybe a few months later than he would have if the EI people had been more observant or forthright with you--but he will get the help. He won't wake up one day when he's a teenager and say, "Crap, my mom didn't get me the right help during that few month period when I was three, so now I am going to knock over a 7-11!"
Sweetie, if I lived anywhere around you, I would invite you guys over, serve you a yummy meal with yummier desserts, let my kids occupy Noah for awhile, steal Ezra and smother him with loves, and just let you guys breathe. You are all gonna be okay. I know you know that, but sometimes you just have to repeat it to yourself like a mantra to help keep your sanity.
And if you need anyone to go beat people up for you, just let us Internets know. We know the mommy rage that comes from people messin wit our chirrens. We got your back, kay?