Just got back from the assessment with the developmental pediatrician…

[SilverFirefly]

…and would love feedback from those who have BTDT.

 

The background:

My DS will be 5 this month). We went in with a working diagnosis of ADHD, SPD (sensory seeking), ODD, an adjustment disorder (some major family changes going on) and some signs of anxiety problems. He also appears to be 2E. All that is from the therapist we have been working with for 9 months. I asked for a neuropsych eval, but DS is too young so I was told this would be formal testing appropriate for his age.

 

The results:

After a whopping hour of talking to me and observing my son he said:

-ADHD looks like a definite fit although because DS is not in school it is hard to say whether those symptoms are “present in all settingsâ€.

-He thinks SPD is a component although he implied SPD isn’t really a diagnosis (which it technically isn’t).

-ODD he doesn’t want to diagnose in a child of this age, but he did say that DS has many of the symptoms and the behavior he observed Noah displaying towards me was definitely not normal for a 4 year old.

-DSs pronunciation is a little behind

-He doesn’t see any signs of LDs, ASD, etc.

 

Treatment recommendations:

1. He does not recommend meds for ADHD at this age unless there is a major safety issue, which there does not appear to be (at least not from the ADHD).

2. The American Academy of Pediatrics recommends putting this age child with ADHD into a “structured preschoolâ€. Apparently the benefits are structure, peer-pressure to behave the way they are supposed to, the opportunity to observe their behavior, and the chance to see how public school works out.

 

So…

I feel like this was a waste of time. It was just the same old questions and no testing whatsoever. I don’t want to put DS on meds unless absolutely necessary, so we agree on that. But the solution to ADHD in a four year old is preschool??? I understand the benefits of early intervention, but how exactly does preschool treat ADHD? And I didn’t get any recommendations on what do to about the ODD, which is actually the behavior that is most dangerous and causing the greatest impact in our lives. I was expecting to get recommendations on things I could do to help DS function more effectively, etc. Am I missing something? Can anyone recommend ways to provide this “structureâ€, etc. from the “structured preschool†in a homeschool environment? Now what do I do? What has worked for you?

 

Thanks in advance for any insight or advice.

[PeterPan]

I agree with you that you don't have to put him in school to get structure. I too found the whole concept of "structure" mystifying. How do you run your day now? I'm just saying honestly, hour to hour, how does it run? You can get him in with his peers for things by going to library reading times, Kindermusic, gymnastics, all sorts of things. It's not like preschool is the only way.

 

Structure means clear expectations and a plan. They aren't really organizing themselves well internally, so the more of that you create for them, the more they can know what to expect, know the routine, and work within it. Or, as I joke with my dd, it's that she wants to unschool, but she wants me to tell her what to do while doing it. :D

 

On a different tack, you might try doing some things like Interactive Metronome, OT for sensory, and things to work on executive function (workbooks from Linguisystems, digit spans, etc.). There's absolutely no reason why you have to sit around and just watch the adhd happen. What the eval accomplishes for you is getting a label so you can move forward confidently.

[FairProspects]

We got the same "put him in a school environment to see how he does" talk from the dev. ped. I think that is par for the course and is actually why we tried PS K, which was a major disaster.

 

Ds doesn't have the ADHD component, but you could try fish oil which is supposed to help with attention. Also, I would seriously consider looking into to OT to see how much it could help with the sensory (and if there is any accompanying anxiety).

[dbmamaz]

Just off the top of my head, since you said part of the issue is some big family transitions, the doc might think that having one place that is totally structured, you know what are you supposed to be doing at all times during the day, and is a safe place away from whatever transition was bothering him COULD help him calm down and give you a break from the negative behavior. But i also agree its often the first suggestion from professionals.

 

My youngest leans towards ODD. Getting him off all artificial food additives helped a lot, dropping gluten and dairy also helped. I do need to have more clear consequences for him, but he seems to have a really hard time controlling himself without that clear consequence. he's 9 now and much easier, but on bad days, he still acts out pretty badly. I still think some foods can set him off, and also cloudy days, which gives him headaches. When he is in pain he is definitely more easily angered and less in control of his actions. growing pains set him off, too.

 

also, my middle child, the one with several diagnoses . . . we went in for help in 1st, 2nd and 3rd grade, but didnt get our first dx until 3rd grade and it was still being refined years later. With a complex kid, there isnt always that much they can do. Some kids will mature out of the negative behaviors eventually . . . even though some kids with those behaviors turn out to be bipolar or ODD or other serious problems.

[SilverFirefly]

I agree with you that you don't have to put him in school to get structure. I too found the whole concept of "structure" mystifying. How do you run your day now? I'm just saying honestly, hour to hour, how does it run? You can get him in with his peers for things by going to library reading times, Kindermusic, gymnastics, all sorts of things. It's not like preschool is the only way.

 

Structure means clear expectations and a plan. They aren't really organizing themselves well internally, so the more of that you create for them, the more they can know what to expect, know the routine, and work within it. Or, as I joke with my dd, it's that she wants to unschool, but she wants me to tell her what to do while doing it. :D

 

On a different tack, you might try doing some things like Interactive Metronome, OT for sensory, and things to work on executive function (workbooks from Linguisystems, digit spans, etc.). There's absolutely no reason why you have to sit around and just watch the adhd happen. What the eval accomplishes for you is getting a label so you can move forward confidently.

 

Our current schedule goes something like this (this part is pretty consistent although times can shift a little depending on what is going on)

7am – Wake up, get dressed, etc

8am – Breakfast (with read aloud)

9am –

12pm – Lunch (with read aloud)

1pm –

4pm – Pick up

5pm – Dinner (with read aloud)

6pm – Shower

7pm – Bedtime with books

 

9-12 and 1-4 vary depending on the day. When there is nothing else going on I try to do the 3 Rs in the morning and then fun stuff like art in the afternoon. Depending on the weather I try to take him outside or to the park at some point. This is also typically when appointments and outside activities are scheduled. DS currently goes to Sunday school, 2 playgroups (both include a combination of play and structured time), and storytime every week. We also do other programs at the library, community concerts, etc. as those things come up.

 

What I’ve been doing over the last several weeks is to set up a more structured schedule. The family transition, while in some ways difficult for DS, has removed the barriers to the structure I’ve been trying to create for some time. This past week I started actually writing the day’s schedule on a whiteboard with DS and then letting him check things off as we do them. So far he seems to really like this (I was concerned he would be frustrated by not being able to read all the words). I am trying to come up with a more formal way to post the schedule now that I know it helps him. I was also thinking about incorporating the week’s schedule but I’m not sure whether that would help him or just be more distracting. I was also contemplating implementing rewards for getting everything done or doing something with good attitude.

 

I am off to research interactive metronome. We currently do lollipop logic, mazes, puzzles, poetry memorization, simple narration, etc. Is there something I’m looking for that is different?

I would seriously consider looking into to OT to see how much it could help with the sensory (and if there is any accompanying anxiety).

 

DS did see an OT for a couple of months earlier this year. We worked on some ideas for a sensory diet. Some I have implemented, like putting a disk swing on the swing set and getting him a ball to bounce on, but others are simply too expensive. I have a wish list of sensory equipment I would love to have, including a crash pad, a tumbling mat, a trampoline, and an indoor swing. Do you schedule a specific block of time everyday for therapy type activities? Do them as needed?

 

Just off the top of my head, since you said part of the issue is some big family transitions, the doc might think that having one place that is totally structured, you know what are you supposed to be doing at all times during the day, and is a safe place away from whatever transition was bothering him COULD help him calm down and give you a break from the negative behavior. But i also agree its often the first suggestion from professionals.

 

My youngest leans towards ODD. Getting him off all artificial food additives helped a lot, dropping gluten and dairy also helped...

 

It’s possible he thought that, but the reality is that this family transition has actually removed a major source of disruption and allowed me to start building a much more structured environment. The ironic thing is that DS’s therapist has said that putting him into a group setting (where he would be out of the home and away from me) on top of the transitions that he’s already going through would probably exacerbate the insecurity he is already feeling.

 

I have been trying to cut out processed foods as much as possible along with extra sugar. But its hard to know if it is having any effect. Would DSs pediatrician be able to test for food intolerances (I already know DS is lactose intolerant) or is this just a matter of trail and error?

Thanks for all the suggestions so far! Would also love feedback on ways to improve the structure and schedule I'm already starting to put in place. It is just so hard to watch my DS go through all this and feel like there is so little I can do and not be sure if much of what I can do is actually making a difference.

 

[ssruckman]

Your day sounds like it is has plenty of structure, and you are doing a great job. I have found a wonderful resource about SPD. Her name is Angie Voss. Google her name and find her website called Understanding SPD. She has tons of information, and talks about how ADHD and anxiety are symptoms of SPD. She also gives great advice on therapy at home and making your own equipment.

 

Suzanne

[PeterPan]

Sounds like you're making good changes! For the indoor swing, our OT used a Sky Chair. The name brand is $100, or there's a knock-off on amazon for around $35. Might make a nice Christmas present. We have a mini-rebounder trampoline. You might find an inexpensive used one on craigslist. People buy them for exercise and then don't use them. They might be affordable at someplace like Walmart new, don't know. I got mine from my MIL's basement.

[FairProspects]

DS did see an OT for a couple of months earlier this year. We worked on some ideas for a sensory diet. Some I have implemented, like putting a disk swing on the swing set and getting him a ball to bounce on, but others are simply too expensive. I have a wish list of sensory equipment I would love to have, including a crash pad, a tumbling mat, a trampoline, and an indoor swing. Do you schedule a specific block of time everyday for therapy type activities? Do them as needed?

 

Ds is a little older now, but back when he was 5-7 we did have a set time for OT activities (and we did weekly OT for 2-3 years). We have an Ikea swing that hangs from the ceiling in his room (I think it was about $40), a mini-trampoline downstairs (again about $40) and a full size martial arts punching stand (gift from grandparents). Now he is in Martial Arts classes 3 hours a week after graduating from OT and that really serves to balance his sensory needs and functions as therapy.

 

Did your ds graduate from OT? What was his transition plan? Our site was fantastic about not graduating a student until a transition/community plan was in place to meet the needs of the child. These kids usually need to transition to some kind of physical activity that can continue their progress in OT.

[jenL]

accidentally started a thread in yours! Sorry!

[SilverFirefly]

Your day sounds like it is has plenty of structure, and you are doing a great job. I have found a wonderful resource about SPD. Her name is Angie Voss. Google her name and find her website called Understanding SPD. She has tons of information, and talks about how ADHD and anxiety are symptoms of SPD. She also gives great advice on therapy at home and making your own equipment.

 

Suzanne

 

Thanks! I'm going to check out her site. Just glancing at her main page I see she has a section about "sensory on a budget".

 

Sounds like you're making good changes! For the indoor swing, our OT used a Sky Chair. The name brand is $100, or there's a knock-off on amazon for around $35. Might make a nice Christmas present. We have a mini-rebounder trampoline...

 

...We have an Ikea swing that hangs from the ceiling in his room (I think it was about $40), a mini-trampoline downstairs (again about $40) and a full size martial arts punching stand (gift from grandparents).

 

Thanks for the ideas! I will definitely look at these for Christmas. My budget is pretty non-existent at the moment, even for Christmas, but some of this looks affordable enough that I might be able to convince the relatives to spring for something. I have a couple of questions...Do the sky chairs spin or just swing in-line? My DS is a more of a spinner. Have any of you tried putting one on one of the chair stands? I live in a really old house and even if we can find a stud anchors tend to pull right out of them, so I would be afraid to try to hand something meant to hold DSs weight from the ceiling. Have you had any safety issues with the mini-trampolines? I hear so much about trampoline injuries and see the recommendations to get the ones with the handrail, but that makes them a lot more expensive. So you have the kind with the handrail?

 

Ds is a little older now, but back when he was 5-7 we did have a set time for OT activities (and we did weekly OT for 2-3 years)....Now he is in Martial Arts classes 3 hours a week after graduating from OT and that really serves to balance his sensory needs and functions as therapy.

 

Did your ds graduate from OT? What was his transition plan? Our site was fantastic about not graduating a student until a transition/community plan was in place to meet the needs of the child. These kids usually need to transition to some kind of physical activity that can continue their progress in OT.

 

We didn't have a graduation or a transition plan. I didn't know they had graduations. But this may also have something to do with him specifically being a sensory seeker? After a couple of months the OT said she thought I had a good understanding of what Noah needed and that continuing to come once a week (or even twice a week) wasn't going to solve the sensory issues. Basically I needed to feed the sensory seeking in a way that was safe and I had to learn to do it at home since an hour or two a week (no matter how great) was just not going to be enough. She also did say that if I needed more guidance, etc. I could always call them up and we could start appointments back up again. Our transition out was also a little disrupted by the fact that our OT had a massive stroke right before what was supposed to be our last appointment. I was looking at martial arts classes for DS, but the reality is that I can't afford it right now. I even had to take DS out of swim lessons because of this transition. :glare: At least insurance will cover OT if we decide to go back to that.

 

 

Right now I've put DSs mattress on the floor of his room and he is jumping on it like a lunatic. :willy_nilly:

 

I'm going to talk with DSs therapist about the developmental ped's diagnosis and recommendations when we see her later today. I'll be interested to hear what she thinks.

[rafiki]

nt

[FairProspects]

I have a couple of questions...Do the sky chairs spin or just swing in-line? My DS is a more of a spinner. Have any of you tried putting one on one of the chair stands? I live in a really old house and even if we can find a stud anchors tend to pull right out of them, so I would be afraid to try to hand something meant to hold DSs weight from the ceiling. Have you had any safety issues with the mini-trampolines? I hear so much about trampoline injuries and see the recommendations to get the ones with the handrail, but that makes them a lot more expensive. So you have the kind with the handrail?

 

Our Ikea chair is a spinning chair. That's actually why we got it b/c ds is a spinner too. We have a newer house so we haven't had any problems with the studs. Our trampoline has no handrail, but it doesn't have springs, just stretchy elastic around the edges (which are also covered with padding) and we've had no accidents at all.

 

We didn't have a graduation or a transition plan. I didn't know they had graduations. But this may also have something to do with him specifically being a sensory seeker? After a couple of months the OT said she thought I had a good understanding of what Noah needed and that continuing to come once a week (or even twice a week) wasn't going to solve the sensory issues. Basically I needed to feed the sensory seeking in a way that was safe and I had to learn to do it at home since an hour or two a week (no matter how great) was just not going to be enough. She also did say that if I needed more guidance, etc. I could always call them up and we could start appointments back up again. Our transition out was also a little disrupted by the fact that our OT had a massive stroke right before what was supposed to be our last appointment. I was looking at martial arts classes for DS, but the reality is that I can't afford it right now. I even had to take DS out of swim lessons because of this transition. :glare: At least insurance will cover OT if we decide to go back to that.

 

Wow, that is completely different from our OT experience. We had an full eval, out of which were created specific goals based on his needs - ds will catch a large spongy ball from 10 ft away while sitting up 10 stairs, ds will walk downstairs alternating feet, ds will swing a certain number of feet high without anxiety in a certain type of swing while doing a task like climbing a rope w/his arms, etc. Then I had homework of written down exercises to do with him all week in between.

 

When issues came up in real life, like difficulty calming down in specific situations, then those were added as social and fine motor goals. Each week we worked with the OT on a variety of activities to move towards his goals. Once a goal was met, a new one was added based on a difficulty observed in his environment. After about 2 1/2 yrs., the OT recommended he start community classes either swimming or martial arts to see how he would function and what issues would come up. After about 6 months of TKD, we had worked out all the difficulties and he was progressing so quickly in meeting his goals, that neither the OT or I could come up with any more goals to create. That was when they graduated us with a re-check scheduled for 6 months out. At the re-check he was like a completely different child he had progressed so much, and they officially graduated us for good.

 

Any chance you could look into a different OT? Maybe one that is more goal focused or holistic, looking at the child and how they function in their entire environment - socially, physically, psychologically?