View Full Version : Where to start?


houseofadhd
03-23-16, 09:36 PM
My daughter (9) just had a neuropsych eval and was diagnosed with ADHD (Inattentive). No big surprise. I've been pretty sure of this for a while based on what we see at home but was stuck in a waiting game until it showed up at school (she exceeds grade expectations and doesn't cause trouble so she's generally just been seen as a somewhat spacey perfectionist who takes a long time to finish things). We have a 504 meeting next week and I feel like we're in good shape there for now.

Her brother (7) has always been an emotional rollercoaster. Always. He feels things strongly and has no hesitation about expressing what he feels, often by falling to the floor in misery/despair or screaming in rage. On the flip side, he's also incredibly caring and gentle and loving and gets really upset if he thinks anyone is mad at him. He has some sensory sensitivities, and though most of it is now within a pretty typical age range, he still sees/hears/senses everything. Like his sister, he exceeds grade expectations at school, but resists things he thinks are boring or pointless or "too hard." (Too hard is still very much within his skill set, but his perception or experience of it is that it is too hard.) He comes home utterly exhausted and miserable most days. From what we can tell, he holds it together really well at school and then just has nothing left by the time I get him at dismissal. He's active but not overly so, though he does best with some time to run around outside after school and definitely gets twitchy if he spends too much time inside on a non-school day. He has always seemed to need more sleep than other kids his age, and has always had a hard time actually sleeping as much as his body needs (hard to wind down, wakes up and is UP, etc). Lately we've seen an increase in refusal to help with chores/do anything other than whatever he wants at a given moment, and when pushed to do one of these things, he generally melts to the floor crying about everything being too hard. He's super sensitive, so any feeling that he's in trouble pushes him farther over the edge, and even efforts to set up positive reinforcement have been too stressful if they focus on more than one small behavior at a time.

Given that our daughter has ADHD, I know it's quite possible that that's part of what's going on for him. He doesn't seem to space out or get distracted mid-task the way she does, but seems to have more of an inability to filter out sensory input and reacts to boring/undesirable activities as if they cause physical pain. It seems increasingly likely that the things that he "should" be able to do actually are a lot harder than they should be for some reason. My question is, where do we go from here? We can go to the same neuropsych and ask for an eval for him, but I guess I'm not sure it's the right time for that yet. His teacher is great at working with him and he tries really hard at school, so she doesn't see anything she's super concerned about yet. If we can't show that he's struggling in more than one setting will this just be a waste of our time? Should we be looking at other emotional issues instead/in addition and if so, what kind of doctor do we see for that? He's so miserable that I can't see waiting it out the way we did with our daughter, but I don't really know where to go from here. We've made some efforts to find a therapist, but finding someone who is the right fit and who takes our insurance has been challenging. Any ideas/experiences to share?

sarahsweets
04-08-16, 04:54 AM
One thing to remember is that adhd in girls is very different than adhd in boys. Have you ever heard of sensory integration dysfunction?http://www.spdfoundation.net/about-sensory-processing-disorder/symptoms/
He doesnt need to meet all of these things, its just a good overview. My son had a lot of this going on and still does. It might be worth taking him somewhere sort of to pre-empt any issues he may have in the future. In my son's case he was diagnosed at age 3.5 with adhd and other stuff so we were able to request an early intervention eval so he could receive services in preschool. This also made it easier to have him evaluated for school so he could receive services there and have educational modifications at school. Maybe your son does ok in school for now but if he does have something going on it will catch up to him in school. And not every child will have every or the same symptoms.
My son received occupational and physical therapy for his sensory issues http://www.spdfoundation.net/treatment/ot/ and it really helped.

I am a firm believer in getting as much help as early as you can. There is a thread I made in the children's diagnosis section that explains my story a little better.

houseofadhd
04-08-16, 10:14 AM
I'm actually in school to become an OT after years of working as a teacher. Trying to problem solve my son's sensory issues (and those of many of my students) is actually one of the reasons I decided to pursue OT. So, yes, he definitely has sensory stuff. He seemed to outgrow some of it, but it's still there in a mostly low-level sort of way. The problem is that it's never been severe enough that we could get a doctor to see it for the problem that it is, and we don't have the money to self pay for a lot of therapy, so we've been kind of stuck. I'm a huge believer in early action/addressing issues before they're a big problem so this has made me crazy. So many of our systems are set up to wait for kids to fail or totally fall apart before help is offered. But that's a rant for another day.

That said, things escalated pretty intensely at the end of last week. While this week has been better again, we're clearly at a point where we need to deal with things before they get worse. We've been unable to find any local therapists covered by our insurance taking new pediatric cases, but we're continuing to work on that and are going to work with the neuropsych who did my daughter's eval to see if we can figure out what is making school so exhausting for him. Our doctor's office just lost one NP and is working on new hires, so we can't get in there for an appointment until May, but we have that scheduled and will discuss sensory and other issues with her then. If things get really bad again I'll call and make them give me a sick appointment.

I'm guessing that the testing will show that he has ADHD, and maybe anxiety and sensory issues as well. If that's the case we will probably horrify our extended families by trying him on meds. I'm kind of beyond caring what they think. At this point, I want my kid to be happy again. A 7 year old should not be this overwhelmed and exhausted by life.

Caco3girl
04-11-16, 09:53 AM
My daughter (9) just had a neuropsych eval and was diagnosed with ADHD (Inattentive). No big surprise. I've been pretty sure of this for a while based on what we see at home but was stuck in a waiting game until it showed up at school (she exceeds grade expectations and doesn't cause trouble so she's generally just been seen as a somewhat spacey perfectionist who takes a long time to finish things). We have a 504 meeting next week and I feel like we're in good shape there for now.

Her brother (7) has always been an emotional rollercoaster. Always. He feels things strongly and has no hesitation about expressing what he feels, often by falling to the floor in misery/despair or screaming in rage. On the flip side, he's also incredibly caring and gentle and loving and gets really upset if he thinks anyone is mad at him. He has some sensory sensitivities, and though most of it is now within a pretty typical age range, he still sees/hears/senses everything. Like his sister, he exceeds grade expectations at school, but resists things he thinks are boring or pointless or "too hard." (Too hard is still very much within his skill set, but his perception or experience of it is that it is too hard.) He comes home utterly exhausted and miserable most days. From what we can tell, he holds it together really well at school and then just has nothing left by the time I get him at dismissal. He's active but not overly so, though he does best with some time to run around outside after school and definitely gets twitchy if he spends too much time inside on a non-school day. He has always seemed to need more sleep than other kids his age, and has always had a hard time actually sleeping as much as his body needs (hard to wind down, wakes up and is UP, etc). Lately we've seen an increase in refusal to help with chores/do anything other than whatever he wants at a given moment, and when pushed to do one of these things, he generally melts to the floor crying about everything being too hard. He's super sensitive, so any feeling that he's in trouble pushes him farther over the edge, and even efforts to set up positive reinforcement have been too stressful if they focus on more than one small behavior at a time.

Given that our daughter has ADHD, I know it's quite possible that that's part of what's going on for him. He doesn't seem to space out or get distracted mid-task the way she does, but seems to have more of an inability to filter out sensory input and reacts to boring/undesirable activities as if they cause physical pain. It seems increasingly likely that the things that he "should" be able to do actually are a lot harder than they should be for some reason. My question is, where do we go from here? We can go to the same neuropsych and ask for an eval for him, but I guess I'm not sure it's the right time for that yet. His teacher is great at working with him and he tries really hard at school, so she doesn't see anything she's super concerned about yet. If we can't show that he's struggling in more than one setting will this just be a waste of our time? Should we be looking at other emotional issues instead/in addition and if so, what kind of doctor do we see for that? He's so miserable that I can't see waiting it out the way we did with our daughter, but I don't really know where to go from here. We've made some efforts to find a therapist, but finding someone who is the right fit and who takes our insurance has been challenging. Any ideas/experiences to share?

This school year is about over...then what? It is a blessing when our children find one of these nurturing and caring teachers that really take the time to "GET" our kids, but what if you aren't as lucky next year? I would have a frank and candid discussion with her on what she has actually noticed with your son. The farther he gets in the school the more the workload will become.

houseofadhd
04-11-16, 03:57 PM
Oh, that's totally our fear. I'm fairly sure we won't get this lucky twice. And with a teacher that doesn't work well with him, it could be pretty disastrous. The problem is, if she sees him as being fine because she knows how to work with him, we can't show that the behavior exists in more than one setting. I'm pretty sure he's using all his coping and compensation skills during the school day to hold it together and that's why he's such a mess outside of school, but we don't have a way to prove that.

Regardless, I handed off the rating scales and she's going to fill them out. Hopefully there will be enough support there for the patterns we see at home. We'll see. We're trying, at least.

KSanchez
04-13-16, 01:06 PM
I understand exactly where you are coming from in this situation, because I have been there and I have witnessed people going through something similar. Most of the points I want to make will echo the ones already said up-top so i'm gonna keep this brief. In my opnion, it always helps to get the diagnosis as early as possible rather than playing the waiting game to see how things pan out. It is a more proactive version of "better safe than sorry". In my case, the case of my brother and also that of a close friend I met in boarding school, a late diagnoses made things a little challenging for each of us. This was mostly because back then, parents and teachers were quick to write people off as merely being hyper or inattentive, not realising that there was a much deeper stemming issue. As 'Sarahsweets' alluded to, it catches up eventually in school and this is something i personally struggled with for a while before i realised what was going on. I hope you are able to get the answers you seek for your son, and good luck with your daughter as well. This is all a journey and it can be a fun anf fulfilling one if things get handled right and on time.