I went into last week’s reevaluation thinking I’d braced myself for whatever they were going to throw at me.
My son is who he is, we’ve found some great ways to help him, he’s making progress, so whatever they wanted to do with one of the diagnosis, whatever.
And mostly, that was true.
Mostly, what they had to say didn’t really rattle me.
They talked about how everything mostly sounded like Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS), like we’d been told previously.
And then they started sounding a bit like Charlie Brown’s teacher when they started talking about how with the changes to the DSM (Diagnostic and Statistical Manual of Mental Disorders), PDD-NOS would just be in with ASD (autism spectrum disorder- see the alphabet soup, y’all?). And in that case, my son may not fit because while he exhibits some of the behaviors, he doesn’t fit in one of the areas.
They kept trying to latch onto any behaviors he has that may be considered repetitive or a focused interest. Like the Angry Bird that he had to have with him during the eval. But they seemed disappointed when I said he doesn’t always have to have it with him or that he changes which Angry Bird is his favorite. They tried to grasp onto a comment I made about how he lines up his Angry Birds every night to be next to him when he sleeps. But no, they don’t have to be in a particular order- they just all have to be there (cringes a bit remembering when we left Darth Vadar pig at the old house when we moved… we got him the next day and it was all good).
Not his whole Angry Bird collection.
But nothing fit what they were looking for. And the team seemed a bit deflated.
Like if you could take A + B + C then you most definitely had X and they could sound like the experts they supposedly are, but A + B with no sign of C means you might possibly still have X, but maybe not, and maybe it’s Y instead, and they don’t sound so impressive. My son wasn’t an easy fit for them.
They tossed out another possible diagnosis, one that I’ve looked into a little bit, and it does sound like it fits, though in all honesty, to me, it just sounds like PDD-NOS with a different name.
Though to get anything more definitive on that end, we’ll have to go see a language specialist, as the place we went for the reevaluation was specifically autism specialists.
Basically, what they told me was not anything I didn’t already know. Which is pretty much the vague, yeah there’s something there aside from the holy shit ADHD (they laughed at my term), but they can’t really say with total certainty what it was.
For the most part, I just sort of shrug that off. Like I’ve told you before, the services that he receives at school are not from his PDD-NOS diagnosis. It’s all as a result of other factors. So there was nothing truly hinging on this reeval- it was suggested we have it done and I like to know as much as I can about what my child is dealing with in order to better help him.
Here’s what did rattle me about the reeval: their focus on his lead poisoning.
While it was made a big deal of back when his numbers were really high, since they have dropped down below the level of concern, every doctor and specialist and anyone we talked to all just sort of brushed it off as well,that was the past and even though there might be long term effects, let’s just focus on what is going on now.
But they kept asking questions about the how and the history and the effects and what I knew about long term, and gee, wouldn’t it have been nice if I’d caught it earlier. No shit, people.
Don’t you think I struggle with that question all the time? And I go round and round and round with the blame. It’s a big long ladder of blame that starts with the asshole who lied about the house being lead-free and then the blame shifts to me then to my husband and then back and forth between Hubs and I, depending on how far back the “if *this* hadn’t happened then…” game I want to travel.
And then came the questions into how far we are pushing the lawsuit because “your son could have complications for the rest of his life, very expensive complications, and you need to make someone accountable.” Again, I’m aware. Do you know how time consuming and often pointless lawsuits end up being?
So, at the end of a very long day of reevaluation, we really don’t know anything more than we did before, we’re referred to yet another specialist, and let’s add in an extra dollop of mom guilt on top of it.
Sometimes this parenting gig is EXHAUSTING.
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I wonder if there are diet things you can do to rid the body of lead. I am sure you have checked it out but I would keep searching because the medical field sure can’t solve many health problems, especially chronic ones.
At this point, the lead is almost completely out of his system and we are away from the source, so that it’s only long term effects of the poisoning that we are dealing with, not it being in his system now.
Definitely sounds exhausting to me.
And we all know moms don’t need that extra guilt.
Best to not travel that ‘what if” path…
We can always find something to feel guilty about. None of us needs any help, right?
Shame on them for questioning the course of events. Things happened the way they happened. Obviously you’re a very concerned parent.
We just got Camryn into counseling in hopes of helping her better deal with her ADD, and to help her express herself better. Slow process, though.
I hope it helps!
That IS frustrating and exhausting. I’m sorry that you didn’t come away with more information or insight into your son’s condition. But YOU are an incredible mama and an incredible advocate for your son.
Thanks, Christine. I sighed at the idea of another specialist- it took over 6 months to get in at this one!
I read a book a while back that said “what if’s” and “if only’s” can totally suck our joy. I’m sure it said a lot of other things, too, but that’s the point that stuck with me. I’m hoping you can get some rest, Shell, and some peace. I can only imagine what kind of mental space this is taking up in your life. XXOO
I really try very hard not to get caught up in the what if’s- it really leads me FAR down a chain of events, and I realize- just how far back do I want to go? I could keep going back and back til you are blaming my parents for even having me, you know? 😉
That does sound like a long day – especially when there are more questions than answers and guilt to go along with them. I can certainly understand not wanting to look back when you are so invested in helping him now, at this moment.
We were gone for over 12 hours, with travel time. I collapsed when I got back home.
Crazy exhausting! I sometimes wish I had super powers that could help my kids, until then we can just do our best. Sigh.
Yes, super powers! I want those!
Shell, I know this. More than I could ever say on my blog. We had an eval with autism specialists last week, and am expecting the report end of this week. I just know that it’s very likely we will get the kind of answers you had, because from the chat we had after the eval with the specialists, that’s what it sounded like. He fit some but not all the criteria. Etc etc etc.
Hugs. This parenting gig really is exhausting.
It is very frustrating to get these non-answers.
If you ever want to talk about any of it, I’m here and have been going through this all for a while. I know it’s nice to have someone who understands. xo
Uggh, yes parenting is EXAUSTING! Keep your head up. Praying for you and your family. Saw you at Bloggy Boot Camp in Charlotte but didn’t get to speak to you:(
You were THERE??? Are you kidding me????
I’m so disappointed we didn’t get a chance to meet.
HUGS, Mama. It sounds like you are doing the right thing. Having the evaluation, seeing the other specialist, leaving no stone unturned, but the important thing is that HE”S DOING BETTER!!! Thriving by the sounds of it and that means you are doing it well, not that it’s not hard.
I keep telling myself that- that really, the only thing I care about is how well he is doing. It’s still hard on my mama heart to hear anything bad though.
Oh gosh, I never quite know how I should comment to these sorts of posts. I always want to say something, but since I can’t relate in a personal way I never know what I should say. In the end I know that all that really matters is that your son is doing better, and that’s awesome. 🙂
Oh girl, I hear you. There are times all I know to say is hugs or prayers. 😉
So I am reading your descriptions of some of the things they were questioning about your son, and it sounded so much much like my older son (with the angry birds toys) that I almost did a double take. He was tested when he was four, but they didn’t really find anything. Based on his school stuff, I keep thinking about getting him tested again, but based on your results, I really don’t know if it is worth it. Plus, the other thing is he has o problems when he is center of attention. It is when he is the classroom or something similar that he loses focus.
I feel like a lot of the issues that my son was having got resolved with ADHD medication. And then the others, while they are still there- he’s able to work on for the most part.
I was a special education teacher and I have been in meetings that sound so similar to yours. Sometimes a diagnosis can help providers understand a child more, more likely that it is just something that needs to be put on an IEP, which is frustrating. It doesn’t really change who your child is.
I actually questioned whether or not to even go through with another eval. Since he was getting the help he needed under other diagnosis anyway. But I figured it couldn’t hurt to see if we could find out any more.
I was so hoping things would go differently. I would have been tire and frustrated after all that.
I really don’t know what I was hoping for. It seemed like a waste. Other than the fabulous lunch date we got to have between the eval and the results.
What asshats making you feel guilty like that. I could ring their damn necks.
It’s really frustrating to deal with not quite fitting into the box of a diagnosis. Frankly I can’t figure out how they can ever diagnose anything because of how much overlap there is in symptoms. When looking for answers before my son’s ADHD diagnosis, he had some characteristics of so many disorders but never fit nicely in one. It’s tough. Hang in there.
I love you, Denise. 😉
It is so hard to get an actual diagnosis. It seems like it can go differently depending on who the evaluator is b/c it’s all so subjective. Though I’d laugh at anyone who said he doesn’t have ADHD b/c his is so extreme.
It IS. It really IS exhausting. I’m sorry it wasn’t 100% what you hoped for, but I’m glad it was somewhat okay. And I cracked up at Alphabet Soup. Dude, seriously, it SO is that way!!
It really is alphabet soup. I’m thankful that I taught many, many special needs children so it doesn’t sound as intimidating to me- it can be like learning a totally different language.
I’m so sorry you weren’t able to get a definitive diagnosis or answer and then on top of that they make you feel guilty – not that you already didn’t. I hope you are able to eventually find some answers but if not just know you are doing the best you can and you are a wonderful mother.
Thanks, Melissa!
Sigh…I hate this appointment for you. You know he’s doing so well, Shell. Don’t be discouraged. Sometimes we think we need answers to get results, but often the results come without ever getting answers, and you’re seeing that first hand. He is who is, whether they have a label for him or not. He’s doing great! and that’s all that matters. ((Hugs))
I know you’ve gone through similar things with your son. It all can feel so confusing sometimes.
Oh Shell… bless your heart!!! You are trying SO hard and taking SUCH good care of your precious child! I can only imagine how exhausting, frustrating and down right brutal it can be at times with it all. Oh, how I wish I could wash away all that guilt! You did the very BEST you could do with what you knew… always remember that. It is NOT your fault.
Brutal- that’s a good description of it sometimes!
Thanks so much for your kind words, Chris. xo
Labels suck. I have the same alphabet soup with some additional and you know what? As long as they are getting services that’s all that matters. So what if he is PDD-NOS and it falls in with ASD? That’s better – it means more access to services. Why does he HAVE to fit into a mold? Just give him what he needs so that he can continue to thrive. If its not impacting you where it is important (school/therapies/medical care) then you know what? Screw it – he’s your son and he is a great one who is growing and learning every day (HUGS)
Yup, that’s how I feel- the labels really don’t matter as long as he’s getting the services. I take heart that the majority he receives are under OHI, which isn’t going to go away any time soon. So whatever other changes are made are more superficial and won’t affect anything.
Ugh, I am so sorry about the guilt. Of course it’s not your fault, but don’t they just know how to make you feel bad anyhow sometimes? I hope the language appt goes well.
That stabbing pain of guilt sometimes. It doesn’t help that it’s always there under the surface. Then these things twist the knife.
it sounds like a bunch of alphabet soup to me and I’m sure they drive you crazy with their evaluations & results, but your son has had such progress this past year and that’s positive in all of this and what you should focus on. You are a great mama and do everything you can for your son and you should NEVER feel guilty about it!
It all gets a bit overwhelming and sounds like a totally different language sometimes.
Thank you for your kind words, Debra!
It is so exhausting! What complete idiots to say “wouldn’t it have been nice to catch it sooner?”. I heard something similar when Tommy was diagnosed with CF after Nico had been. One idiot said, “it’s a shame you didn’t know you guys were carriers before you had kids” and another said, “too bad you didn’t know so you could have screened when you had the IVF.” Well, Dumbasses, then none of my kids would be here or Tommy wouldn’t and I can’t imagine this world without them or him. I am so frustrated for you that they are trying to pigeonhole him into and A +B=C formula. Kids are individuals and shouldn’t be viewd that way to make their jobs easier. Hang in there, my friend. You are doing an awesome job with your little bear.
Ugh! Such idiots is right. You’d think the people used to dealing with these situations would learn what they shouldn’t say to us!
Aww just hang in there. Breathe.
Thanks, girl!
Ugh so sorry to hear this! I know it must be tough when they want everyone to fit in a certain “box” and when it’s not the case they don’t know what to do. HUGS!
They were totally stumped. They wanted to be able to give me a definitive answer and they just couldn’t.
Shell, that comment about “wouldn’t it have been nice if you caught it earlier” drives me UP.THE.WALL! I dealt with guilt (still do) over my son’s hand (missing tendon) and ultimately his surgery and then not paying attention to the fact that he was sitting with his legs to the left constantly (now has left side weakness and no balance at all) which all lead to him not walking until 20 months. Ugh! Why do people feel the need to say that?!
It’s such a pointless comment t make to us- b/c it’s not like we can go back in time and change it!
And there are things like with your son that well, we see it all the time and it just seems NORMAL to us b/c that’s how it always is!
Yes it is exhausting! I hate IEP meetings, I always leave feeling guilty about something I’m not doing or didn’t notice.
Last year’s IEP had me feeling totally overwhelmed and like there was so much I needed to being doing. I cried happy tears at this year’s, so it was a very nice change.
Oh my word! I have been through the GUILT trip of having a child with learning disabilities… to the point of allowing the doctor to deliver her using primitive forceps – ! I admire doctors, I really do overall but when they try to heap on guilt… Girl, I say just SPIT IN THERE EYE!
Parenting is hard enough without some “SPECIALIST” asking questions over and over and heaping on the guilt.
YOU ARE A GOOD MOTHER! Look in the mirror and repeat that to yourself over and over again 🙂
Have a wonderful day!
The added guilt is so unnecessary, isn’t it? We do it to ourselves enough as it is.
geez…what a long day!
It really was. Gone for 12 hours, with the travel time. And mentally exhausting.
Ugh. How frustrating!! Such a long day then the “same old” questions that were there from the very beginning. Xoxo. I know you still feel horrible and probably still put blame on yourself and don’t need other people questioning all that Hang in there Shell and remember you are a great mom who is doing everything possible for her boys!!
Thanks, Ang. I definitely still have that blame. I remember calling you and telling you what was going on as soon as I found out b/c I didn’t want to wait til our playdate at Chuck E and cry there and you told me I wouldn’t be the first mom crying in Chuck E Cheese. Your supportive friendship means so much to me. xo
You are a wonderful momma, and your boys are all so lucky to have you! I’m frustrated for you with the non-answers from the re-eval, but happy that this has been a better year for him & he’s making great progress. Hugs & love!!! xo
I’m trying to keep the focus on the thought that he’s making improvements and just sort of ignore the labels.
I can’t imagine how frustrating that must be, they seem to run you in circles. Good luck to you, you are doing a great job of making sure he gets the help he needs.
Thanks, Julia!
Just a “quick”, supportive: I’ve been there. Somehow we survived. Wishing you well.
All three of my step-daughters are on the “autism spectrum”/PDD-NOS. One of them was diagnosed “severe and profound, IQ of 60” at age 5. They are all doing brilliantly in college now.
Lack of “fitting” a diagnosis might be a good thing: your son isn’t “sufficiently impaired” to fit into some of the easy categories. Not knowing sucks, but “not sufficiently impaired” can’t be a BAD thing. He is less compulsive than they expected, that’s probably for the best.
They aren’t helping you by dredging up the past (IMHO). YOU have the right attitude: deal with what CAN be done, here and now. If you can sue, sue. If you can’t, then forget it. If you can’t decide, ask an attorney. If you can’t afford an attorney, then forget about it.
One day at a time, dealing with the things we Could do and not worrying about the things we could do nothing about is how we lived. For years. All the way from kindergarten to college.
Barry Kaufman’s book “Son-Rise” might help a little. We liked it, but I’d take some of it with a grain of salt too.
All the best!
I do try to take heart in thinking that his issues aren’t so severe that it’s super easy to diagnose him. And truthfully, I thought about cancelling the appointment. I only made it because our doctor suggested it- and it took 6-7 months to get in, by which point things were really going well for my son. But I figured I might as well keep it and see if they had anything useful to say. It felt like sort of a time waster though.
Thanks for the book suggestion- I will check it out!