Friday, November 9, 2012

Did not expect this one...

I've gone back and forth of how I wanted to present this post tonight. I don't want to be whiny, or negative or gloomy. But I must say, I just feel slightly defeated in general this week. I've had some stressful and overwhelming days, like everyone has from time-to-time, so I was kind of looking forward to the boy's school conference on Thursday evening. I speak to the teacher and/or the speech therapist at least once each week or so, and they always rave how well the boys are doing, thriving and generally coming along. We see the progress at home in many different ways.

It's no secret that Brady is really struggling with speech, so I knew his report in that area would say he's not meeting goals, but everything else would be great. Which it is!
Both the boys are regarded as extremely good natured, kind and even polite. Jax will most likely graduate from OT and PT this year - Awesome!
Now, of course they are typical 4 yr old boys who bounce off one another and can be totally naughty and make us pull our hair out, but overall, they're great and we're so lucky! I mean, they've never even had a tantrum at school, or had a fight with another child, or anything like that... so that's why I felt like I was totally hit by a bus when I was given "the talk".

The teacher, the speech therapist and even Jax's Occupational therapist all sat looking at me in a very kind way and gently told me that they all suspect the boys to have ADHD and would like me to have them further evaluated by a medical team.

um.... what?!

I felt like the room was spinning, and while I didn't have the same sickening feeling that I've had in the past when a doctor would give me bad medical news, this still felt like a punch in the gut. I found myself starting to grasp at straws and telling them that they just told me how great the boys were and how they weren't sassy or had tantrums... I felt like the mom who refused to believe something 'bad' about her kids and I was immediately aware that my defensiveness looked ignorant. So I just sat there.
They said I had the wrong idea of what ADHD was, and that while some children who have it may have disruptive outbursts or be aggressive, that's not how all children with it are. Also, this was not a diagnosis, but rather their referrals for further testing because they all suspect it.
The main reasons for their concern are their impulsiveness. They feel that the boys will jump up and plow through everything and anyone to get to the next activity without regard to their own or others safety.
Also, attention - which I honest to God thought they were pretty good. They said that when they sit knee-to-knee with the boys to work with them, the boys can't focus on their face and the shiny object in the room always wins out - even when specifically asked to look at the teacher.

Ok... that all sounds like things that need to be worked on. But does that mean a developmental disorder of ADHD?
They asked if there were any particularly tough times at home that reoccur and the only thing I could think of was dinner time to bedtime is slightly chaotic. The boys are totally bananas and talk, yell and run so much, that Jason and I just can not have a conversation - but isn't it like that at everyone's house with two four year old boys?? Yes, we repeat ourselves NUMEROUS times and many times they act as if they have no idea what we're saying or just said, but again.. I assumed it was the age in addition to their delays. Do I sound naive to any of you reading this? Please tell me!!

I was told that they may have calmer demeanors because of their diet and routine at home, which are actually two factors used to treat children with the disorder. I can't even wrap my head around this for some reason... I mean, I know that food dye and fake sugar are major behavior triggers in children and we really limit all of that, but... but... omg, I just don't know! 

Now, I know that we're in a heavy "find out what's wrong" phase right now, and obviously we want to know so we can help the boys be the best they can, but I really didn't expect this one. Even when the Geneticist told us last week that the boys were in the high danger zone of having learning disabilities and/or ADHD, I just felt sad about that thought of a learning disability - I swear ADHD wasn't on my radar.

So... is ADHD the end of the world if it is something going on? Of course not - but in my world, it's a total blow to us right now. The boys have SO much going on to overcome to even be on the same playing field as their peers (even being held back a year) that this is just one more possible hurdle that breaks my heart into pieces.
The boys will be evaluated at the Child Development Center over the course of the next two months (remember all those set appointments?) and this center specializes in all of this, so clearly it will be addressed by them. The teacher and the therapists said they'll be filling out the paperwork from the CDC, so they didn't want me to be surprised to see their suspicions of the disorder without this prior discussion.

So we'll see. Clearly a developmental pediatrician, pediatric psychologist and the reports from school AND HOME will all figure out the puzzle. The school speech therapist told me that I need to be prepared for a dx of Apraxia from them, which I am prepared for. She said that she's so proud of Brady for getting the 'mmm' sound out, but clearly, after 2 months of work and getting one sound out, he needs a lot more help to start being to effectively speak and communicate some day and the days are counting down to 4k quickly.
Which lead us to the discussion of an 'Assistive Technology' referral. Brady will be evaluated to see if his classroom can have an assisted tool to help him speak and communicate. The therapist told me of a few apps that I could purchase to download on an Ipod or Ipad that Brady could use. He would learn the program to push buttons with pictures, and it would speak for him. I checked out the apps today and they are rather pricey, so we'll see what the Assistive Tech person suggests. The therapist gave me a hug and told me she was so proud of me for considering the tool because Brady really needs it, but sometimes parents have a hard time accepting its necessity (because it's seen as such a 'special needs' tool).

On top of this, I received a call from the Endocrinologist department for an appointment. We were able to find a day that wasn't already filled, so that's set for mid-December. I think my family may run away come February.
Yup, you'll find us on a beach somewhere.
So, I have two question for all of ya'll out there. Are your kids 'coughing' more this season? Brady is on his third cough this fall already (they both started colds today) and I just find it odd.
And second - do I sound crazy in this post?

Good job Brady! (he drew Daddy)

I had to draw the circle for Jax, but you can tell what he was drawing!

10 comments:

Little Wonders said...

Oh Annie, I'm so sorry! I only "know" the boys from the many stories I've heard here, on FB and the board, but I'm totally with you ... I wouldn't have thought ADHD at all. They seem so sweet and kind and just typical 4-year-olds! And our dinner to bedtime time span sounds exactly like yours!! Good for you for following the therapists&teachers suggestion, though, and having them tested - because if it is really the case, it will only help to know. But who knows, maybe just one time the medical professionals are wrong?!

kmcclelland said...

I'm a teacher (3rd and 4th grade), and I just feel like 4 years old is very, very young to be thinking about an ADHD diagnosis. Even with 8 and 9 year olds it can be difficult to pinpoint if their attention is truly "clinical" (ADHD) or if it's just developmental, as all children develop at different rates. It makes me wonder if the level of focus they are asking of/expecting of the boys is appropriate for 4 year olds. Not to say that these educational professionals aren't wonderful and trying to help your boys,, but I would definitely have reservations with this if I were you. I've been reading your blog since the boys were born (I have twin daughters that are the same age as your boys) and like the previous commenter said, I never would have thought this was an issue your guys would face! I am hoping the best for you and your family. :) -Kirsten

June said...

Hi Annie! I never comment but I follow your blog and I was on the multiples board with you. My twins are just a few months younger than yours - almost the same age and they are the same way. No mention of ADHD or anything else. I seriously think it's too early to diagnose that. Four year olds are crazy! I am not a health care professional by any means, just another 4 year old twin mama. I can't imagine all you are going through right now and I will pray for you today. I think your boys are doing awesome and I would definitely be questioning this potential diagnosis. Best wishes!

tesyaa said...

I have an 8 year old with apraxia and ADHD (also autism spectrum, unlike your kids). He uses assistive technology for speech using the iPad. He has improved with ADHD meds, so even if your kids end up with this diagnosis, it's likely to be treatable. No reason to panic, even though it seems rough right now.

Oh, and I have 2 other boys with ADHD who have normal speech and language. And 3 neurotypical girls (sigh about on the differences between girls and boys).

All the best, you seem like an absolutely amazing mom.

Michele said...

Could definitely be that - my daughter's diagnosis (which I strongly suspected since she was 4) was confirmed right before she turned 8. The thing is, you probably don't want to do medication at their young age and they are actually probably too young to accurately diagnose, so I'd just keep doing what you know woks for them - routine, diet, etc. The thing is, a diagnosis doesn't help overly much until they are school-aged anyway and you're looking at things like IEPs. At this point, what would be the point? There's no magic cure, it's just a brain wiring thing with associated behaviors that you figure out how to manage.

With the cough - could he be having an asthma flare-up? Does the cough respond to albuterol?

Michele said...

Oh, and our dinner time sounds exactly like yours and has for years ... but my kids do have ADHD (the 8-yo) and mood dysregulation (the 4-yo). ;) It's normal for kids this age to have lots of energy but yes, they should be able to focus their attention on the person talking directly to them, and it sounds like they can't. It's not a moral failing or a parenting failing - my girls are actually *very* sweet and polite. It's just brain wiring. I know a lot of kids my 8-yo's age who have gotten the diagnosis and it's been valuable from the perspective of understanding the way their brains work ... and unlike back in the 90's there is really very little stigma attached to it any more. You're in VERY good (and ample) company, believe me!

We transferred my daughter to a really good alternative school program in our district for 3rd grade and she's really thriving now, without medication. A lot of it is the environment, and expectations have to be adjusted for kids with ADHD - not in any way lowered, just adjusted. But attentive parents often find that they are already doing most of the recommended things even before the diagnosis, because they are attuned to their kids and already know what works for them.

Craig & Shannon said...

You don't sound crazy sweets...just a totally fantastic mom protecting her kids. Question - Research - Investigate.

Michelle said...

my daughter with a speech disorder at 4 was thought to have adhd as well... she was tested at 4 and was nowhere near the diagnosis... as her speech has developed (she's now 6) nobody ever suspects it. i am not a doctor... this is just my theory on this but i feel like she moved around so much because since she wasn't understood well verbally, her whole body and all it's movements became part of her language and i may sound crazy but it's my honest mommy thought about why she was all over the place and so bouncy but didn't have adhd.

Matt & Shana said...

Sugars and food dyes can make a big difference like you mentioned. My mom seriously altered our diet from about 6 onward because I'm super hyper and my brother had ADHD. On the bright side I'm a crazy work-aholic engineer and he's almost a Chiropractor so those labels don't always mean that much :) Keep your chin up, you're doing an amazing job!!!

Jenn Murray said...

Not sure if you remember me from MM, but my boys have a speech delay....we *almost* got the apraxia dx, but now at 4.5 are progressing along in the speech department. ADHD was never brought up, but eye contact has been a huge problem for therapy. I couldn't count to ten without them breaking eye contact. They move around from activity to activity....and are just plain crazy. They're boys. It's getting better. We enrolled them in ninjutsu class to help with focus. At our 4 year well check, my pedi warned me about boys being different that girls....they're just different and you have to fight for their attention. We have recently limited tv to 2 shows a day and that has helped us tremendously.