Faster faster more more more
October 22, 2007
Sorry, sorry. Forgive the pun, but I needed a few hours to process everything. I was extremely cheerful for about 10 minutes after the therapists left this morning, but after describing the evaluation to a couple friends I realized that oh my God, I really just want to go to bed for days.
(And Girl Scout cookies. I really, really want some Girl Scout cookies.)
The evaluation went well, in that Noah easily qualified for weekly occupational therapy sessions for oral and gross motor skills and a host of sensory-processing issues.
It didn't go well, in that Noah like, easily qualified. For a lot more than I was expecting, honestly.
Every question, every answer, every knowing "mmm-hmmm" rattled me more and more, since I would describe what I thought was something fairly innocent -- something that makes Noah so unique and special -- and they would mark another symptom off the SPD checklist. He's cautious and thoughtful and would rather sit and read books than dive-bomb off the couch. Well, that's probably because Noah is not processing his responses to physical movement properly.
Wait. What?
He toe-walked the entire time...something we thought he'd more or less outgrown...and at one point he wobbled and fell over while standing completely still. His speech therapist said she's seen him do that before. I bit my lip and tried not to cry, because my God, I never noticed.
I've preached and clucked that sometimes, the single best thing you can do for your child is admit that something is wrong. Today I had to put their checklist where my mouth is, and I didn't like it.
I'd been thinking about this comment by zdoodlebub all weekend:
Nothing in the future will ever come as close to all the emotions and fears you had the first time someone confirmed that, yes, there may in fact be something wrong with your perfect child. You are doing the work and thankfully you are blessed with professionals who are on task and proactive. Emotionally, however - it's all downhill from here. That mommy-vulnerability blister is now a callus. It may act up when you have to wear new shoes, but not for long.
So true. Ridiculously true.
The first time around, with the speech delay, was terrifying. It was huge. It was a wig-out of spectacular proportions.
This time I'm just sort of...cranky. Skeptical. Done. Worried about how I'll get all my writing deadlines done with two weekly therapy sessions.
Worried that there's something else I'm missing. Something that's just waiting to march into my house, clipboard in hand, and ask me where the hell I've been, what with my kid walking into walls and climbing down stairs with a two-handed, white-knuckled death-grip on the railing.
***
There's no doubt in mind that if I ever needed to throw myself into oncoming traffic in order to save Noah, I would. Without hesitation.
In fact, the only part of that imaginary scenario that makes me anxious is the fear that I wouldn't be able to get my body in front of that car fast enough.
You should try to find comfort in the fact that you are being pro-active. You're not kicking and wailing and denying...."not my child." You may want to, but you're not. You are, in fact, doing everything right. EVERYTHING.
When you don't have another kid to compare to, how are you supposed to know what's normal? Sometimes I hate these "experts".
I don't need to say this, because you know it, but Noah is still as funny and smart and yummy as ever. You need a big hug and a delicious wet toddler kiss.
I am so sorry that Noah needs any of this but yet so glad these resources are available for him. At least they had an opportunity to see exactly what needs to be worked on now so they can come up with the best plan for him. I always seem to have the problem of the car that doesn't make the funny noise until I drive away from the mechanic or the kid who is perfect at the doctors office then runs a fever when we get home. I can't help you with the girl scout cookies but Halloween candy makes an excellent subsitute.
Remeber, everyone's definition of "perfect" is different. It sounds like you are the best thing that could have happened to Noah. Keep it up.
Has anyone ever mentioned dyspraxia or apraxia of speech? My oldest (3.5) has dyspraxia and what you said about preferring to sit and read books is totally her. She still hasn't a clue about where her body is in space and can be more than a little clumsy. Not that you need one more thing to look into, but see if there are any hippotherapy programs in your area. The one my daughter is in starts them at 2.5 and it really has made the most difference w/ her gross motor issues.
I've been where you are and boy, does it hurt to hear your beautiful child isn't perfect.
You will go though a grieving process. It's ok to yell, scream, cry, be mad at the world and jealous of others who don't have to deal with it.
You DO come out of it. Don't suppress your feelings, Amy. Get through it whatever way you see fit.
Six years after diagnosis, we're amazingly blase about stuff. That's not to say that we aren't diligent about my son's needs, just that we roll with whatever the doctors and teachers ask of us.
No matter what issues lie ahead, your son is still adorable, precious and amazing. He's going to knock your socks off with what he can accomplish-because he will.
For me, the biggest day brightener is when my son comes up and gives me an unsolicited hug and a kiss and says "I love you, Mom". His younger brother will say it dozens of times every day, but that once in a while one from my older son? Priceless.
Oh, and I've got 6 boxes of Thin Mints in my freezer. where am I sending them?
i'm so there with ya girl. we just got confirmation ava's speech delay is in fact not r/t her being stubborn. i just bawled reading your post...girl scout cookies where for aren't though???
I think you are awesome, not just for tackling this head-on but for putting the whole experience out here.
It goes without saying that your kid is also awesome.
When you look at that adorable little kidlet, I want you to remind yourself of this...
Out of all the men and women who have ever lived,
out of all the daddies and mommies in the world,
God PICKED YOU AND JASON to be Noah's parents.
God knew that The Noah would belong to the two of you, and the two of you would belong to The Noah, long long before Jason ever popped up on your radar screen or your biological clock ever started ticking.
You were meant to be Noah's mommy from the beginning of time.
Now, go eat some cookies.
My wife and I went through a period of stone-turning in the belief that we needed to be doing more for our son--even with several experts telling us that OT and speech therapy really were everything we could do right now.
I get defensive when thinking of Scooter's sensory issues as something "wrong," probably because I have the same issues. But I also realized that I spent a long time figuring out how to deal with them on my own, so why not give my son a little help on that? And I also calmed down once I could see that the OT didn't change him on a fundamental level, but instead brought out the positive qualities that I felt didn't show up outside the house very often.
Plus, he thinks OT is the most fun weekly playdate. He doesn't know it's improving his balance and appetite and speech.
There's nothing to say except, It's going to be ok.
My son was diagnosed with several learning disabilites and I remember that feeling. It was almost like I made a defective child and it was my fault, even though I knew it wasn't.
Keep being pro active and doing what's best for Noah, he's lucky to have a mom that cares so much about him.
I know I'm in a large crowd here when I say that it's obvious from your writings that you're outstanding parents, he's an outstanding child, and everything is going to be just fine. All your hard work and emotion will pay off with spectacular rewards.
Hi Amy,
I am a long time reader, first time commenter, but just had to add my two cents. Just because Noah isn't doing thing conventionally or is having trouble with sensory issues does not make him ANY LESS perfect than he already is. Here is a video that you might find encouraging:
http://www.youtube.com/watch?v=wVxT4XO0ZuY
Best wishes,
Jessica
Wow. Zdoodlebub hit that nail right on the head. Why can't I be that eloquent? Instead I simply mumble a bunch of neaderthal crap like, "It sucks and it will suck again but not as bad."
Big hugs to you and Jason.
I'm glad you are a pro-active parent in a pro-active area with lots of good resources.
I feel like I'm out here all alone with my child and his various problems and the teachers and school are saying, "what do you expect us to do."
I know it'll probably all be okay in the end, but the getting there is going to kill me.
Be proud you're doing everything you can for the little guy. I agree with Jessica- this is part of what makes him, him- even if it is a "disorder", or whatever, it still makes him unique, and there's no reason you shouldn't see it that way. Especially if it's something adorable, like preferring to be thoughtful and read books.
(How is that an issue, by the way?? I thought that was like, the ideal child. That's what I don't get about this. If he was dive-bombing off the couch, they'd tell you he had ADHD. So what's "normal"?? Dive bombing into a quiet read?)
... do they have girl scout cookie gift cards? cause i would so buy you one right now.
hang in there :)
Don't be so hard on yourself..you're an amazing mom.
And you know he is STILL perfect.
What they said above, esp. Pam - you ARE doing exactly what's best. Noah couldn't have a better, more wonderfully awesome set of parents.
And, HE is wonderful! All you have shared with us about him- I LOVE reading about him- how sweet, how funny, how smart, how caring, how cute, how silly he is. And truly truly, you and Jason are making sure that the real problems get addressed and he gets all the help he needs.
Also, though, just preferring to sit and read books in itself doesn't necessarily mean anything is wrong. I know it really looks that way combined with everything else (and very well could be, of course), but not every child WANTS to fling him/herself off of furniture, not even every boy.
An acquaintance of mine had a little boy who often liked to just sit and stare off into space, even drooled a little when he was young. She took him to the doctor, and the doctor checked him out and said "There's nothing wrong with him. He's just laid back." And he was- he was just fine and healthy, and he's now in his mid-twenties , married with 5 children (and he's my best friend's brother-in-law).
Not everything is a symptom, so please please don't let everything special or different about Noah freak you out, or diminish how great of a boy he is. Even if the book thing IS indicative a problem, it's still really cool that your very smart boy likes to read (as well as he can , of course:)! AND, some parents would LOVE it if their kids could entertain themselves quietly once in a while...
I'm positive plenty of Noah's uniqueness is still NOAH, pure and simple...and he is SO lucky and blessed to have you and Jason as his parents. Never ever forget that. :)
I have to agree with Cassandra. My 13 year old nephew IS the kid that would rather divebomb off the couch, and he has SPD, so what the hell? I know the 'experts' would say it's all a matter of degree, but the reality is, if every kid was tested, they would all come up with _something_. Noah is an awesome kid, not a robot, and while he might need some extra time and extra focus from you guys, he's still flourishing and loving life and finding his own way, and that is freakin awesome.
Noah is Noah, regardless of how much therapy he needs for his speech and motor skills. As hard as it is to process it right now, it is part of who he is. And who he is is perfect. You are doing everything you can to help him and you should be so proud. He's a wonderful little guy and he will flourish with the right help. Having a mom who will do anything for him is a huge asset as well. He's a lucky little dude. And please, consider putting him in a child-sized hamster ball or something so you don't have to run in front of any cars. A boy needs his mama!
You're doing everything right! You're getting him help. You care. You worry. There's nothing more that you could be doing that will help him. It's a puzzle right now, and YOU are putting all the pieces together, with the help of prefessionals. That "more" will come as the puzzle is put together! You're doing great!
Oh, I hear you. I'm not gonna say I know how you feel - let me just say that everything you say resonates deeply with what we're going through too. And just try finding out your child is speech delayed when YOU'RE an f-in speech therapist! (Ok, I work with adults, but still...)
Anyway, hang in there. And pass the Thin Mints. =)
Just wanted you to know...you are in my thoughts and prayers. and noah is extraordinary. if he DOES have some issues, it is even more impressive that he is adapting to sign language and other forms of communication.
Listen, please listen....Isaac is 6, when he was FOUR he could say " du buh" that's it. De buh, over and over. He looked at no-one ( but me and daddy) he was obsessive about where things went, his clothes were his 'thing' same outfit every day for weeks and weeks, he was quite honestly so bizarre and so different that people were afraid of him.
When he started school he had selective mutism, he still has trouble speaking at times, is still frozen into silence often but look. PLEASE look...
Just this week, on his OWN....what he did...
http://myquietthoughts.blogspot.com/2007/10/can-you-believe-this-boy.html
Miracles happen and yours already did, mine already did, we got these kids that other people hmmmm and tut over and scribble notes about. Then they go home and we are left with what? Perfection, that's what, miracles that other people never get, never weep over because no-one told them their kid was 'different' I thank God every single day for my Isaac.
Let them hmmm and scribble, you just keep loving the miracle and remembering who Noah is, look at the joy you have had every time he has signed and spoken and walked with his feet flat on the floor. He'll get the help and he will fly, you WILL look back on all this and wonder why you worried. HE is glorious and he's yours.
I'm so going to be you in a few months. Because my 14 month old son is stoic and cautious and serious, all the time. Oh, he'll laugh and be engaged and play with you. And his physical skills are very advanced for his age ... but he is still not talking. He can say "dada" but he doesn't attach any meaning to it. He will either speak in perfect, complete sentences in 7 months, or he will need speech therapy to help him get there.
We all do what's best for our kids ... and it's a never-ending struggle to help them, protect them, and share with them. It hurts your mama heart to know something isn't right, but you want it to be all over RIGHT NOW. You'll feel it again and again ... when you have your first ER visit, when his heart is broken for the first time, when he goes to college. Parenthood isn't a neat and pretty package, as much as we want it to be.
Hang in there. You're doing the right thing, even if the reason for it feels so terribly wrong. And you are not alone.
That last paragraph totally got me. I understand that truth, I really really do.
One thousand percent agree with Liana up there who said:
"Not everything is a symptom, so please please don't let everything special or different about Noah freak you out, or diminish how great of a boy he is."
(Just coming off my own weeklong roadtrip to see family in another state. At which time Z's differences once again snapped into crystal clear megapixels, baby.)
I hope my comment that you referenced in your post was a comfort, a sense of not being alone...I hope I didn't in any way diminish what is a very complex set of emotions - this mothering thing.
I'm tackling you with hugs and I'll even be nice and share one of my Samoas with you. Okay, half. ;)
Oh, forgot to mention the most important thing...
He's TWO. You are so on this at the perfect right time.
When Z was three, I could only picture him as a high school kid with exactly the same skills he had as a three year old. Don't torture yourself like I did.
The advances you've made just since this summer when Noah started speech therapy - you are going to see the same leaps and bounds when the OT starts. Promise. It's all about getting those pathways, grooves, connections, what have you, going in his brain. It's going to happen.
I think Tertia at soclose is talking about this a lot in her entries about her son. I think he's having some different types of sensory issues than Noah, but she has done a great job of explaining things so that her dummy readers (like me) can understand.
And for what it's worth, I think you are doing an amazing job with Noah. What a wonderful boy!
Amy, I'm not a mother but I want to tell you a quick story that I think I'd find comfort in if I was. My husband never spoke a word before he was well over 3 yrs old and failed all sorts of developmental tests in the years following. He is 29 now, and he definitely does process so may things differently than anyone else I know, I seriously think he might have those sensory-processing issues you've described. We talk about it all the time, the small things he does struggle with. He even is a little color-blind too. But Amy, he is a scientist, and a professor at a university, and his students love him, and he is happy. What I am saying is, he has a totally normal life, and he is successful and Noah will have that too. By the time we grow up, everyone's got something a little unique about them, and I'm not trying to make light of how serious you feel. I wish you all the best, I think you're an excellent parent and your son seems absolutely perfect to me.
You. Are. Doing. Everything. Right.
seriously.
It might seem like they are picking him apart and leaving you with the feeling he's put together all wrong...but he's not. The specialists will do their job, Noah will be the perfect boy he already is, and all you need to do is keep hugging him and loving him and know that it will all be okay! Really!
Perfection is God's alone.
Trying to put the 'perfect' label on anyone (never mind a child) is unrealistic and sets everyone up for disappointment.
Your intelligence, humor, strength, and advocacy will bring your family through this and you will all be fine.
Fortunately there are professionals who know how to help him learn how to work around his challenges. Thankfully you have the outlet to help so many others who may be going through this or who will go through it. Thank you for sharing your experiences, joys, fears, and ups and downs.
Keep up the good work!
Wow. This brings back memories. This is how I felt when our son was first born - 13 weeks early. I know it is completely different situation, but the "mom blisters" are the same. After a few months, I grew accustomed to "doctor speak." I listened to what the doctors didn't say. I would go home and research until my head was about to explode with info. overload. After awhile, it didn't matter what the drs said and I stopped the research. All that matter was my little boy. I knew we could get through anything and I knew we would do anything to give him the best life.
During all the preemie stuff, I realized there's no such thing as "normal." Everyone has something. All you can do as mom is what's best for your child's "something."
Like everyone else has said, you are doing everything perfect!
Don't beat yourself up for not knowing and immediately recognizing all the signs of speech/motor delay. You don't have an older child to compare with and when you're with a baby all day, what they do is your "normal". That's how everyone (or at least all us normal women) feels when their child is diagnosed with delays... like "Why on earth didn't I notice that? And get this therapy thing going when they were in utero? aaagh!"
And good heavens, he's a CUTE KID!
Try not to get too wrapped up that he "easily qualified." At some point you may be relieved that it was so easy.
It didn't take me long when we started having our son evaluated to hope he would do poorly. It just made every thing easier in the long run when it came to doing services. Better to get more services than less.
It sounds like he is making great progress with his speech. It wouldn't surprise me if he does the same with the OT.
And I echo all the comments about how adorable he is! Thanks for sharing him with us!
I'm so sorry girl, I know. Believe me I know. I have one with Down Syndrome, one who is dyslexic and has Irlen's syndrome- now the fourth kiddo has speech/sensory issues, and something else that hasn't been identified yet. Take care of you, and take a deep breath- it will all be ok.
I'm sorry about your news.
My 7 year old has Aspergers and the first time anyone mentioned to me the possibility that there might be something atypical about him I ran through the whole gammit of reactions. I was mad ("How dare those people suggest there's something wrong with my child!"), I was in denial ("Nope, not my boy."), I felt guilty ("How could I have not noticed something was wrong sooner?"), I grieved ("Have I lost the little boy that I thought I had?")
I promise you though that eventually it got easier. It's really true that the first part is the hardest. There are days where raising my son is hard but I can honestly say that the hardest days were at the start of it all. It's ok to be angry and sad and cranky. The important thing is that you're doing everything that you should he here. Awesome job on getting Noah the help he needs to deal with whatever it is that he's got going on.
One final thing, my son may be atypical but he's also exceptional. From the way you talk about your little guy, I can tell he's the exact same way. Nothing is going to hold this kid back, not with a momma like you in his corner!
You're an incredible mother...Noah is so lucky to have you to help him through whatever comes his way.
I could never say anything as eloquent as that comment or this post so I'll just offer my love and support. And also, maybe, a glass of wine should I ever get the opportunity.
P.S. That picture is incredible. And also, you're a wonderful mom. And also, he is amazing because of it.
My youngest just qualified for weekly OT today. There were far too many boxes marked on the SPD check list for him as well. While part of me is thankful that we're finally getting somewhere (we've been to many "specialists" with little result) part of me feels like I just died a bit too.
My mom has some thin mints. Want me to steal them for you?
I believe that you are already doing so much for Noah by being so concerned.You wouldn't believe how many parents just "don't care". You care and that what sets you apart from them and that is the first step in helping Noah
It was that relentlessness of it all that initially undid me. Not that something was actually wrong with our special little guy, just that sense of 'oh my God, this is never going away'.
But someone up above said it - not everything is a symptom. It took me a long time to realise that Oscar's key and car fetish were because he really loved keys and cars, not because of some processing (auditory or otherwise) issue.
However, there's that dawning of the reality that you're going to have to teach your child things that come instantly and naturally to other kids the same age. And the clamp that comes with that realisation which attaches itself over your whole being and that tightens with each session where you walk away with even more activities to do at home (when am I meant to get all this done? WHEN?) and the gut churning guilt when you haven't done it all by the next session which far exceeds the worst pit-in-the-stomach sensation you used to get when you realised you really weren't prepared for that exam at school. And the fear of becoming one of 'those' parents who talk about their child reaching a milestone as if it was reaching the summit of a mountain. Those who have to explain their child to people.
While our story and experience is different the sentiment is still the same, and I want you to know that the waves of overwhelm that are currently dumping you in the surf of parenthood do start to thin out. They still hit you, sometimes when you least expect it, but their frequency abates. You will relax again in that, that tension you're currently holding through your jaw and shoulders? That's almost stopping you from taking a really deep breath? It too will pass.
And if you need help doing that, go back and read your post on how much you're loving 2.
finally delurking (is that the word?) - i have been reading your blog for a couple of years now and have been amazed the i can get such a laugh from the life and wit of someone on the other side of the world (i am in melbourne, australia). especially after a very hard year, my daily chuckle from amalah makes my morning. i have an 11 month old and i just wanted to let you know that i hold you up as an example of the type of mum i am trying to be. don't worry yourself about noah's delays. you are doing everything in your power to get him over the line and the amount of luvvin' he obviously gets will see him through. thanks again and all the best...katie
i love that kid and you, too.