Wednesday, November 29, 2006

Moderate Likelihood

There are two theories floating around right now about Bub’s verbal and social development:

1) He is basically normal, and only appears to be delayed due to parental neglect. This theory is rooted more in optimism than in self-hatred, and its staunchest proponent is my husband, who argues that Bub has spent most of his life alone: he has usually been the only child in the home-care settings he’s been in, and when he’s at home he plays so happily by himself that we have often hesitated to horn in on his games. As a result he’s had comparatively few opportunities for social interaction with adults or peers, and his language delay is the natural and inevitable result.

2) He is actually autistic, but his symptoms are masked by excellent parenting. This is the theory proposed this morning at his autism screening by the speech language pathologist whose job it is to determine who gets on the waiting list for the developmental pediatrician. (Yes, that’s right. We just spent eleven months on the waiting list for a screening to determine whether Bub can be put on another waiting list.)

A bit of a catch-22, isn't it?

For an hour this morning, while Bub happily hooked fish with a plastic fishing rod, quietly being the most radiant, best, sweetest version of himself, I fielded questions. Does he enjoy sharing experiences with us? Absolutely. Does he engage in imitative behaviour? He has begun to recently, though I would have said "no" a few months ago. Does he express empathy? Ha! um, I mean, no, not at this time. Does he point? Yes, because we taught him how all summer, as we walked around the neighbourhood pointing out basketball hoops and fire hydrants, showing him how to extend his index finger and raise it in the right direction. Does he respond when you speak to him? Sometimes – if he realizes there’s something in it for him.

At the end of it all, she talked to us about how sweet Bub is, how well he’s doing. "I’m leaning toward ‘Low likelihood of Autism,’" she explained. "My gut feeling is that he’s one of the kids who will go on to do well." After a meeting with the psychologist, though, she wasn’t so sure. He’s in a good place, but the route he’s taken to get here hasn’t been typical: every step of the way he’s had to consciously learn the things that other children do naturally, and we’ve had to consciously develop techniques to teach him things that the Pie is doing of her own accord, naturally, organically.

So we came away with a check mark beside the box that says "Moderate likelihood of Autism" and a spot on the waiting list. Our turn for the real diagnostic assessment should come up in about a year’s time. And I’m oddly pleased by that result. When I made that first phone call to TykeTalk last December I was wanting to show my son to an expert who could pat me on the head and say, "Run along, silly woman. Your son is just fine." A year later, I’m less frightened than I was by what it means for Bub to be who he is. If he’s a quirky kid, if he learns differently from other children, I want to know about it, and I know I’ll be okay. For nearly a year now, part of my identity has been that I’m a mother of a child who might be autistic. Any change to that identity, in either direction, would be an adjustment. If I had walked out of the screening clinic with a check mark next to "Low likelihood of Autism," I would feel relieved right now, but a bit worried too – what if something important was missed? What if there’s something I should be doing to help him that I don’t know about?

But having teetered this morning on the borderline between those two results, I’m finding it easier to face another year of waiting. Bub is doing well. He will continue to do well. And by the time he starts school, maybe we’ll have some real answers.

45 comments:

Julie Pippert said...

Oh my. This is so difficult.

My friend walked this same path (and I alongside) and it's a challenge.

Since then I've learned a lot about autism. (And published a children's book abotu it.) It's really just one of five disorders on the Pervasive Developmental Disorders spectrum.

Her son came away with a PDD-NOS diagnosis. And is getting excellent early intervention that makes a difference.

Anotehr friend of mine just had her 11 year old son's PDD-NOS diagnosis reversed.

Possibly due to excellent parenting and good early intervention?

Regardless, he's a great kid, sweet and doing well.

It's an art more so than a science.

I'm not sure what options you have up there, but my friend always always stresses to listen to your mommy gut and get second opinions.

It might not be a PDD thing, but you are concerned about something, and that bit is real.

So I'm glad you got some validation, both positive and potentially helpful for Bub.

If I can help you with any resources (such as good diets, information, books)...I'll be glad to. Let me know.

I must say, you sound good. I'm glad.

And Bub's a lucky kid.

metro mama said...

I can't believe how long these waiting lists are.

He's got such a great mom. He'll do well no matter what the diagnosis.

Kyla said...

Such a wait!! I thought the wait to see our developmental ped was long, and it was only two months! Both my kids were very ill that day so we had to cancel in favor of an emergency pediatrician appointment, but they were able to squeeze us in in less than a month. I'm not good at waiting (which you know by reading my blog) and a year might kill me! I'm on pins and needles for our 6 month f/u MRI. I love that you are so zen about all of this. Very refreshing. :)

mcewen said...

We had a similar experience due to bad timing on our part. [end of semester and summer break therefore nothing could be done] If we took the private option [we did] then they might improve to make them borderline = no services. You just do the best that you can do, and you're certainly doing that.
Best wishes

Em said...

Waiting for answers can be hard... I'm still waiting and we still don't know exactly what is going on.

However, over this last year, I've come to accept that we might never get a definitive diagnosis - regardless, it doesn't change anything about my daughter - she is who she is and no label will alter that. You seem to have arrived at this point so much more easily than me :)

You're right... Bub is doing well and he will continue to do well (especially with such wonderful parents!)

blog_antagonist said...

I think I've mentioned my Diminutive One's issues before, and while they differ a little from Bub's I understand everything that you're feeling.

It sounds like you are being a strong advocate for him, and with that he will fare well no matter the diagnosis.

Cognitively, DO is doing very well. We are dealing with some emotional issues, but I think they can be dealt with constructively.

I'm sorry you have to wait some more. Healthcare in the U.S. is faaaaaaar from perfect, but I have been fortunate in the respect that I have never had to wait to have one of my children's needs addressed. If we could successfully marry the postive aspects of both systems, I think we might have something pretty good.

Best of luck with persuing a diagnosis for Bub.

Jill said...

Autism is the most perplexing thing going right now. I'm counsel for a large school district and we have experienced 200% growth in our autistic population over the past ten years. 200%! That said, I always think that your descriptions of Bub sound developmentally close to target. . . . But that probably doesn't help you much to have some person on the Internet say "he sounds fine to me." It seems like you have the right perspective, regardless of the ultimate diagnosis.

jen said...

wow. what a difficult thing to navigate - and you are doing so with such grace. he's got an awesome mum...

Jenifer said...

Oh my. I came back to comment on Tuesday's post and offer up some funny prof story of my own. I had never heard of the Rate Your Prof website...I have only been out of university - oh wait it has been awhile. Maybe another day.

Well, I am sure no expert in the field but I have to agree that if care and concern count Bub will be more than fine. These delays are insane when you hear so much about early intervention. You are so much more patient and rational than I think I would be. We had to wait a few months for some advanced hearing tests with Papoosie Girl and I could barely make it.

It's funny how this can define you. We get so used to being something you almost don't want it to change...it would be like starting all over again. Regardless, you both sound like you are doing fine. We all learn at different paces and in different ways...if his differences are eventually labeled you will love him, teach him and guide him with all the courage and grace you have shown him every day thus far.

Bub is a lucky boy.
Best wishes for all of you.

Mouse said...

I understand your feeling right now. When Scooter went in for his 3-year exam this summer, we brought up our language concerns and were told, "He seems just fine." At the time, we were relieved and so we didn't push. But now I'm realizing that we need to forge ahead with a specialist, even if it is just developmental and nothing more.

An added frustration for us is that our healthcare through the University requires more maneuvering and is especially difficult for children's services--I think that SickKids will require us to pay upfront. And we will probably need a referral from a doctor first if we want any hope of getting it covered--so we'll have to convince the doctor we've sort of set up as our family doctor to make that referral.

Here's hoping a year goes by quickly.

Aimee said...

"The waiting is the hardest part . . ." , oh sing out, Tom Petty! My son has SPD (Sensory Processing Disorder, which many autistic children have, but which is not technically on the spectrum. But it's all neither here nor there, because the waiting for the specialist is the same no matter what. The Boy has a lot of fine motor and other vestibular and muscle tone issues, as well as expressive language problems, so he has his own stable of therapists and he is responding extremely positively to the work they do with him. But a lot of it is still research, questioning, and feeling-my-way-in-the-dark with him, so when his therapists evaluations comment on how much The Boy is benefitting from his attentive parents, I feel like I am doing something right, even if it is only the smallest thing I can do for him. We love him and we are good parents, and I carry that with me in my heart, as a balm and a guard against the not-knowing of it all. You are doing the right thing, and doing it beautifully.

Beck said...

My oldest child has a serious speech issue and has been in speech therapy since she was two. Over the past five years, we've met a lot of little boy non-speakers - all with different causes - and ALL of them are talking now. Every single one.

DaniGirl said...

Your grace at handling this continues to amaze me. Bub is so very lucky to have someone who is willing to give equal credence to her own instincts, his father's instincts, and the 'experts'.

I'm glad you have an outcome (albeit ongoing) that you're at peace with.

Mother Bumper said...

I can't believe how long these wait lists are but I'm glad that you have some relief in the current assessment. You are excellent parents for recognizing that there may be something to investigate (so many miss the signs). I think your instincts are telling you all is going to be okay. I always say that I have no idea what to say but I just wanted you to know that I'm here to listen and support you.

Mayberry said...

Wow--I'm so impressed by your patience and positive attitude. It sounds like you've done a wonderful job tuning in to what Bub needs, no matter what his issues are or aren't.

Jane Plane said...

I've been reading for awhile, but this is my first comment - I'm very pleased I found your blog, it's a wonderful read.

It seems like one benefit to the long waiting lists is it really gives parents time to come to the conclusion that you did - Bub is who is he is, regardless of a diagnosis, and you love and appreciate that person. When you finally get a diagnosis, it won't necessarily define him, as much as give you the information you need to help him become the best Bub he can be.

Anyway, good luck to all of you on this journey, and patience and peace for what comes. Thank you for your beautiful, heartfelt writing.

Oh, The Joys said...

Bub is in such good hands with you.

I don't have the right words, but I am thinking of you.

OTJ

Binkytown said...

Thank you so much for your comments on my post yesterday about feeling frustrated on dealing with a spirited child. I feel somewhat ashamed today because clearly, there are much bigger challenges to be dealt with. You are really a role model on how to go with the flow and let your child develop while enjoying the process. Inspirational.

bubandpie said...

Jane Plane - Your comment hit the nail on the head: "When you finally get a diagnosis, it won't necessarily define him, as much as give you the information you need to help him become the best Bub he can be." Exactly, exactly.

To everyone who has commented on my patience - Patience and cowardice are walking hand-in-hand with this one; it's easy to stick with the status quo (waiting). I would be feeling much, much differently if Bub were suffering - if he seemed to be in real distress. I assume there are ways to hurry to the top of the waiting list for children whose needs are extreme and immediate - at least, I hope there are.

And in the meantime, we're also getting referred to an O.T. to work on some of the spatial issues (pointing, following our gaze, and some of the awkward or quirky body language Bub manifests from time to time). Speech therapy starts next week, also - so we're not entirely stuck sitting on our hands.

Thanks so much for your words of support.

Mamalooper said...

Bub is very very lucky to have parents who not only love him for who he is, but work hard to help him be the best Bub he can be. I can only hope that whether or not Monkeygirl needs any formal interventions, that I can be just as supportive of who she is.

Mad Hatter said...

It's hard to know what to say. I am baffled by the waiting lists and I am baffled by a syndrome (autism) that may or may not manifest itself in hundreds of different ways. I often feel for the health care workers who are trapped by an inadequate system, trying to deal with such slippery diagnostic tools, and trying to do their best for the kids and families involved. And yet, if I were in your shoes, I would not possess your patience, your grace, and your sheer understanding of all the issues and nuances involved. Bub is a lucky boy indeed to have you as the mother navigating him through this maze.

cinnamon gurl said...

This sounds like such a difficult path, and yet you are walking it with beautiful patience and love. I think plane jane is right; one benefit of long waiting lists is it gives you time to process the possibilities and what they mean to your family.

Bub sounds like an amazing little person, from an amazing family with amazing parents.

owlhaven said...

In nursing school, the instructors hammered over and over on the importance of looking at the PERSON, instead of the diagnosis or their lab report or other clinical stuff. Bottom line: how is the patient tolerating it?

The fact that your son is doing well is much more important than whatever assortment of letters ends up after his name.

hugs

Mary, mom to many

Veronica Mitchell said...

I have no words for you, just sympathy and hope and good wishes.

Robbin said...

I don't know if this is any help to you at all - but when I lived in New Orleans, I worked with a man who had a PhD in Physical Biochemistry (no slouch of a program, there), and was involved in biochemical research into cotton production. He was also autistic. It could be a bit of a pain to communicate with him until you learned his idiosyncratic way of speaking, but after a while, we all got very good at it, and there was no problem at all.

ali said...

either way...he's lucky to have a mom like you...

T. said...

I feel for you.

I was doing the same wait for the same answers.

I have no advice other than not to get too bummed or bogged down by any diagnosis or lack of.

Just love him to pieces.

Good luck. You're in my thoughts.

Jennifer said...

I agree that Bub is very lucky to have parents like you in his corner, doing whatever it is he needs to continue to thrive. And while I don't believe I would have your patience or calm, I admire your approach. Because, in the end, putting a name or label (or not) on the way Bub learns will not change who he is. He's Bub today and he'll be Bub after you see the next doctor and he'll be Bub 5 years down the line. And he's a lucky little guy, definitely.

Mel said...

I'm sure that whatever happens, you'll be able to meet it with the same strength and optimism you've shown to date.
(((you)))

Haley-O said...
This comment has been removed by the author.
Haley-O said...

Doctors are so quick to label children with all kinds of disorders -- autism, ADD. Both seem to be running rampant these days. Bub sounds so adorable and sweet. Kids learn in their own different ways. I'm glad you feel a little bit less stressed now -- after this appointment.

No matter what the outcome, though, he's in excellent, caring, loving hands -- and that's what makes all the difference. :)

Jaelithe said...

Virtual hugs to both you and Bub.

I am sorry but I cannot agree with your husband that you are neglectful parents. You will have to make up come up with a different optimistic slant :P

ewe are here said...

Bub is incredibly lucky to have you and your husband. There's obviously a lot of love in your family, and it sounds like Bub is making his way in spite of the healthcare system.

I do have to say, I find the long wait times for potential developmental problems in children absolutely criminal. Really. Because early intervention makes a huge difference for many types of developmental delays. I have a friend in the UK who was struggling with getting her boy seen for developmental delays, everyone knew he was delayed and needed physiotherapy to improve, but there.were.no.openings.for.months!

Nancy said...

I hear you on this post. But for us we have another option as well, according to the person who interviewed me when I requested a formal assessment: a kid who might not speak much because the rest of her family is busy jabbering away.

The screening process for developmental delays is so interesting -- I was impressed with the thoroughness with which the person I spoke to addressed Rosie's speech delays and social issues, but I do wonder if the outcome would have been different if I'd spoken with a different person. Sometimes it seems arbitrary how they decide one kid needs early intervention and another has a "wait and see" approach applied.

I think you're absolutely an excellent parent in any scenario you are looking at. It's obvious you are a huge advocate for Bub, whatever the outcome of his testing may be.

marian said...

Piggybacking on Mary's comment about looking at the person and how well he is doing: Pursuing a diagnosis, if there is one at all, is important and could set yo uin the right framework for looking at things, but the bottom line is adressing his needs as you see them. Services and understanding have defintely improved since my eldest was first diagnosed, but our experience, and that of so many others I know, is that the diagnosis is just text on paper that gives you access to a few additional services. There is generally no hand-holding following an autism diagnosis, that is " here's your diagnosis, and here's you exact prescription for treatment". One reason is the fact that "If you've met one child with autism, you've met ONE child with autism." All you're left with in the end is looking at the specific child you are responsible for and finding the best ways to meet his specific needs out of all the information out there. So you're doing just FINE where you are for right now.

mama_tulip said...

Sounds like a lot of hurry up and wait...which can be frustrating, yet a lot can happen in a year. Makes it a little easier to face, like you said.

I love your attitude about this, and that a diagnosis will only aid you in helping Bub to become the Bub that he's meant to be. I've felt that way about health issues Oliver has had over the last few months -- I don't care what it is, I just want to know about so I can help him manage it. Quite different situations, obviously, but the same feelings are there.

Bub's lucky to have such a strong family...and such a great mom. Best of luck in the coming year.

Idle Person said...

Hello,

I wish you continued strength at this time - it must be very trying. You guys have a wonderful approach to dealing with the situation, but don't forget to allow yourself to feel all of the various emotions. Sometimes its easy to try to be strong and positive - which is great for Bub and Pie. But its so important to take care of YOU and Hubby (feelings and emotions) as well.

I wish you all of the very best. I hope that the waiting period somehow gets shorter and all of the interim measures have their desired effect.

At any rate, he's a very lucky boy to have you. I really enjoyed your comment on Ewe are Here's blog re: Downs Syndrome etc, its esactly my view. The fact that you have such a generous and loving attitude to any sort of possible problems makes Bub a very lucky boy indeed.

But I do pray that everything resolves itself soon.

bubandpie said...

Marian - Your comment helps a lot - it's easy to assume that as soon as we get a diagnosis we'll get to the part where the "experts" step in and "fix" him. Good to be reminded that a diagnosis is a tool, really - just another means of understanding what is needs are and what options are available to help address them.

Idle Person (hee hee - still laughing at the name) - I have been a bit surprised at my reaction this week - I was feeling myself over for bruises this morning, checking to see if my buoyant spirits are concealing some kind of inner abyss of despair, like the one that was triggered a couple of months ago when we learned of Bub's percentiles for language development. I've got a couple of factors working in my favour this time: (1) there was no new information, really - nothing we didn't know already; and (2) Bub has made it so easy, this week, for us to recognize how lucky we are to have him. He's so relieved to be over his ear infection that his buoyant, cooperative, playful - and he's also on one of those sudden language spurts, experimenting with prepositional phrases, getting the hang of full sentences - he's giving us every reason for optimism. A little check-mark on a page doesn't mean very much compared to the moment yesterday when he looked at me across the lunch table and said, "I like you, Mama!"

Mommy off the Record said...

"A little check-mark on a page doesn't mean very much compared to the moment yesterday when he looked at me across the lunch table and said, "I like you, Mama!"

I love your perspective. Bub has a wonderful mom and, though the waiting and the wondering must be quite difficult, your attitude about the situtation is admirable and will undoubtedly help pull your family through this period.

Mrs. Chicky said...

I admire your attitude on this. I don't know if I could be so positive about it so soon after hearing a possible diagnosis but then again I'm not walking in your shoes.

I wish I had more thoughts on this subject for you but I don't have any experience with autism. I do, however, wish the best for Bub and for you and the rest of your family.

sunshine scribe said...

My best friend's daughter was diagnosed autistic after 5 long years of waiting lists and specialist appointments. I admire your approach to this. So balanced and earnest. I am going to ask her to read your entry. Bub is lucky to have such a great mama and whatever the ultimate diagnosis he'll be more than a label no matter what.

Momish said...

Your insight and attitude are amazing and breath of fresh air. Bud is blessed indeed! And, you are you with such a lovely boy.

"I Like you, mama" simply melts my heart!

Red Rollerskate said...

It sounds like you're working with him so well... giving him some space, but also working closely with him (teaching him to point, etc.). It sounds like a good balance!

karrie said...

I really like the way the first person to comment remarked that this is more of an art than a science.

My son was finally officially diagnosed with an expressive speech delay, and we start services next week. He went through a full evaluation, where he lined things up, hand-flapped and I had to answer yes to "does he ever walk on his tiptoes?", but he was also very focused, and social with the women conducting the evaluation. He enjoyed their presence so much that he even cried when they left.

I'm frustrated for you that your waiting times are so lengthy and absurd.

Mary Joan Koch said...

I confess I am infinitely more skeptical about experts that newer parents could possibly be. Preschoolers are being diagnosed with serious mental illness and put on antipsychotics that have an awful safety record with adults. Overdiagnosis is a much more likely outcome than underdiagnosis.

I figure two of mine would have qualified for a bipolar diagnosis and one for an autistic one. I can't imagine three of my preschoolers ever cooperating with testing. My oldest refused to stop playing with blocks to come to juice during her nursery school interview. The director, who had worked with Margaret Mahler in a therapeutic nursery, decided to accept her on the spot because she admired "her strong sense of self."

Listen to your mommy gut. You are a great, great parent and he seems like a brilliant little boy.