Need to vent, any advice is welcome - CHADD's ADHD Pare...

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Need to vent, any advice is welcome

Partyof6 profile image
15 Replies

Hi, I’m new here. I have a 7 year old son with adhd combined type and sensory processing issues. He was only recently diagnosed but we’ve known he was different than our other kids since he was 2. We recently started OT for the sensory issues, fine motor and retained primitive reflexes. We also have tried modifying his diet ( no artificial colors, flavors that sort of thing) without much of a difference. I feel like his behavior is getting worse and feeling completely helpless. We went camping this past week and his meltdowns, impulsivity and just plain mean behavior pretty much ruined the trip for everyone including him. For example, we went hiking after dinner the first night. He was constantly running ahead, not stopping when asked to wait, then his 3 year old brother started copying his behavior. We ended up having to hold his hand. Then he didn’t want to hike anymore so he started screaming and repeating “I want to go home, I’m hungry (we had just eaten), I’m thirsty (stupid me did not remember to bring water)” this meltdown continued and we had to cut the hike short and go back to the camper. He cried the whole way back while the rest of us walked in silence. My heart broke for him, for his siblings. I don’t know if I’ve ever felt that helpless. I’m getting better at recognizing when he’s not regulated but I don’t know what to do to help him at that point. I’m worried my other kids will resent him for “ruining” activities, I’m worried it will affect their relationships, I worry about how all of this makes him feel. I’m just overwhelmed. Any advice, tips are appreciated. Thanks for reading my word vomit lol

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Partyof6 profile image
Partyof6
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15 Replies
Applecrisp profile image
Applecrisp

Welcome! Rest assured this is a helpful place to vent. You will get sympathy as well as different perspectives and ideas.

Our son is 11 with combined type ADHD. In my opinion, there is also something more to it given his lack of ability and interest in relating to other people in an appropriate, reciprocal way. He is a challenge in that he isn’t independent the way other 11 year olds are, and we are his only social outlet as he has no friends, he can be very stubborn, and he drives away other kids and parents wherever we go. But we don’t experience meltdowns or anger really.

I’m sorry you are dealing with your son’s behavior and seeing that it affects him too. This is heartbreaking to watch, I know.

One thing that helps me is to see progress in long, long time views. I just have to expect that I will work like an ant a tiny bit at a time and only see changes after a long spell of patient effort. This is not my strong suit, but I’m working on it.

You didn’t say anything about medicine. Are you willing to consider that now or in the future? We put our son in counseling for two years which was great. The counselor’s recommendation for medication meant a lot because she had also had done the patience and had a relationship with him. For us it was also seeing how far he was from acting in age appropriate ways, and realizing that social expectations and level of difficulty just go up every year. He was missing so many milestones.

Feel free to vent and keep us up on your progress. We are always here.

Partyof6 profile image
Partyof6 in reply to Applecrisp

Thank you so much for responding! Sometimes it’s just nice to know someone understands what you’re going through. Currently he is not on medication. We were hoping for it to be a last resort but we’re starting to feel like we don’t know what else to do. We would like to get him into counseling. He makes comments about hating his life, nobody liking him, feels like he screws up all the time. We’d also like to start healing his sibling relationships because they are often strained. I’m having trouble finding one the works with kids and has specific knowledge about ADHD and sensory processing issues though. Maybe that doesn’t matter, I don’t know. You said your son doesn’t have any friends, do you have any family that is understanding and supportive? That has to be hard on both you and your son.

KazooVirtuoso profile image
KazooVirtuoso in reply to Partyof6

I don’t have any tips … just want to say that I “see” you. My 5 year old has ADHD and sensory processing issues. When he is disregulated (a daily event), everything is a disaster. He will scream, hit, spit in our face, throw things, threaten to kill himself (or go non-verbal and just scream over and over). He will be mean to everyone around him (especially myself and my husband - berating us for every move). It is all around heart breaking.

We are working our way through medication (have tried a few things that have not worked so far), speech therapy (to give him tools for expressing his needs - which has helped on the edges) and have plans to do behavioral therapy. He starts Kindergarten in the fall and has an IEP already.

I would say that family is generally not understanding… they don’t really get it, but we are working on educating them. My mom (who has always disapproved if my career choices), has blamed my job for my son’s ADHD and is expecting that the issues will go away as I reduce my work schedule (I’ve just moved to part time). My mother-in-law doesn’t really think ADHD is real.

We’ve accepted that no one can really understand because they don’t really see the worst of it.

Anyway, I would’ve to tell the story about how we’ve overcome all this, but sadly we are at the beginning and are just doing our best to survive…

Partyof6 profile image
Partyof6 in reply to KazooVirtuoso

Hi! I totally understand dealing with the disregulation on a daily basis. My son will cry uncontrollably, throw things or push things over, scream, get really silly, make this high pitched shrieking noise, be just generally loud. I wish we would’ve pushed harder to get him help his kindergarten year. His teacher had concerns about how he’d do in 1st grade but wouldn’t fill out the paperwork from the pediatrician about his behavior at school. It’s great that you already have an IEP in place. My son isn’t falling behind enough academically and isn’t enough of a disruption at school to qualify unfortunately. I think he spends his day trying to “be good” and focus so when he gets home he has a complete meltdown or is just beyond wild and crazy every day. It’s nice to know there are others going through the same things.

KazooVirtuoso profile image
KazooVirtuoso in reply to Partyof6

My son is similar - he mostly keeps it together at school (though with some impulsive control challenges - which his preschool teachers flagged early on), but nothing in the realm of what we see at home. Then he looses his shit at home. The specialists say that’s a good thing in a way, because it shows that he at least knows what the right behaviors are and is capable of engaging in those behaviors at times.

One doctor likened it to going to a really stressful job during the day. Maybe you grit yourself teeth and smile at your horrible boss and act patient with mean customers … but you hold it together. Then you come home and snap. I think that must be what it’s like for our son … he tries SO hard during the day, and then just loses it in the evening.

Yesterday I was sitting calmly with him and said, “I’m really enjoying sitting here with you and feel like I’m in the Green Zone. What Zone are you in?” He said, “I’m in the Yellow Zone because I want to hit something but I’m restraining myself.” I was shocked. There was no outward sign he was distressed. He must be working so hard at holding himself back all day…

(BTW - Check out the Zones of Regulation - we’ve found it helpful.)

Applecrisp profile image
Applecrisp in reply to Partyof6

Thanks, we do have his grandmother who is very patient with him. That helps.

It’s interesting you said your son acts upset about not having good relationships. Ours has skipped directly to saying he doesn’t care (since around age 6). But I think he has both social deficits and social anxiety that he plays off. Your son sounds like he might give you or a counselor a start by admitting he wants things to be better.

I’m starting to watch ADHD Dude videos on YouTube. He has a lot of good perspective for boys with ADHD. I think in some areas he is trying to discredit other approaches (like counseling) to build his brand, but he also makes some great points (we had exactly the same not so great experience with social groups that he predicts). You may want to check it out—he has some material about blow-ups that may be useful.

Hope you are able to see some progress soon!

Onthemove1971 profile image
Onthemove1971

Welcome! Children with ADHD are often "viewed" with a lens that is really set up for a Neuro-typical child.

Our children are different and they struggle.

For our family medication was the 1st choice becuase we wanted him to decrease his negative behaviors first, before we asked him to do counseling, deal with peers that don't understand him and ask him to tackle all of the school issues.

When medication works it is life changing for everyone. Also when they are the correct type, dose and timing they do not change who they are, it just takes the symptoms away.

This blog is always willing to support and share with you.

I could make suggestions: like try to do things in the AM, not afternoon ( this is usually the best time), of course try to have snacks and water. But the reality is that most children who do not have ADHD can handle all of that or "put up with it", our children can't.

The good news is that as our children mature they learn to handle things better.

Hope this helps..

Partyof6 profile image
Partyof6 in reply to Onthemove1971

I’m definitely not against medication but I’d be lying if I said it doesn’t scare me. I don’t know if the horror stories about kids becoming mindless zombies is what scares me or if having to admit that I’m not supermom enough to “fix” my own child. I thought having an official diagnosis would suddenly open this door of understanding what was going on and how to help him but it didn’t. I’m beginning to lean toward exploring medication because I’m tired. I want things to be better for him, his siblings, for us. Thanks for listening.

Onthemove1971 profile image
Onthemove1971 in reply to Partyof6

But you are "superwomen".. you are working with your son the best you can and that you should be given the award of superwomen... I am not here to convince you of anything. But I'm here to reassure you of a few things parents have to learn on their own.

There are 2 types of medication commonly used to help decrease the symptoms of ADHD.

1- Stimulants- most of these are given and start working right away and then they are out of their system ( like really gone) until they are give another dose. You can watch a child who takes medication not act silly, impulsive, hyperfocus, talk to much...etc. not do that, then when the medication wears off, instantly start doing it again. Then be given another dose and the symptoms go away.

2. Non-Stimulants- these help with mood regulation, focus, etc. These (at least ours) are given long term and when the medication is skipped it is easy to tell, but it really helps them to be able to control anger a lot.

There are no rules to these, you can start one and once everything is ( dialed in) stay at that dose.

Medication is a must for our son, he can not function and has done very.. very well with medication. Some children take a while to get the type, dose and timing correct.

As far as side effects are concerned, having less of an appetite is the biggest, but our son grows and eats very well. We have him checked out yearly to make sure he is meeting the growth goals. Some people say sleeping is harder if a dose is taken in the window of time when they need to sleep.

We are here for you either way and will wrap our arms around you and support you. Some people say it's like giving a child that struggles to see glasses. Or a child that is a diabetic inclin.

Thanks for joining us on this journey.. Please ask any questions you want answered, we are here for you. We have been there and struggled like you.

Take care!

Momchiz profile image
Momchiz

Hello!I just want to encourage you. When my daughter was diagnosed, putting her treatment plan together was the first thing we did. When medication was recommended as part of her treatment (a daily home routine + therapy + a 504 plan at school were the other elements) , it was super hard for me to digest and accept. I wrangled with the medication part for almost a month. Then I spoke with a counselor who specialized in and was extremely well studied in ADHD. He assured me that the medications we were exploring (my daughter takes methylphenidate) had decades of data to show no adverse long term affects. He helped me to understand that I have a responsibility to give her the best chance to thrive. Because of the way her brain works and the very real executive functioning deficiencies she has, medication will help her. It will give her a chance to be better able to function. Rather than thinking of it with guilt, he invited me to think of it as a gift to her. As hard as that hike is for you and you family, it’s also very hard for your son. Kids are amazing and they are more in tune than we give them credit for. With my daughter I realized a lot of what we were experiencing with her was her seeing others around her all day everyday able to do things she couldn’t. We saw it, but she lived it all day…everyday. Not able to finish her work at school, getting in “trouble” for behaving in ways she couldn’t help, people (her parents, her siblings, her teachers, her classmates…all the MOST important people to her) constantly frustrated at her, correcting her, upset at her for things she just naturally did and couldn’t help. . and when you let people down all day everyday, it affected her more than anyone…and then things start spiraling. My advice to you is give medication a chance for your sons sake. Give him a chance for a successful hike…by giving him the tools he needs. Maybe he can’t do better than what you saw, with medication maybe he can…and then he feels better and your whole family benefits. Nothing is forever, test the medication route for a period of time (it may take a bit to find the right one and dosage) and see what you think. Good luck.

Momtrying profile image
Momtrying

Just to address the worry about siblings, the only insight I have is that it does get better. My son with ADHD is almost 13 and it’s been a long road and continues to be with his siblings but the older they all get, the more they get along. Medication and maturity (little by little!) is helping his siblings see a different side of our son. The melt downs and plain meanness still happens but not as much and we all have a bit more patience for it. I would try hard to have your other children understand what’s going on in an ADHD brain. That way they can know that he’s not trying to be a jerk. Although it feels like that! It’s hard, so hard but it will get better. And you can vent along the way!

Partyof6 profile image
Partyof6 in reply to Momtrying

Thank you for this, it’s very encouraging to hear it should get better. I’ve tried talking to his siblings about how his brain works differently and tried to help them understand but I don’t know if I’m finding the right words. Does anyone have any good resources for talking to kids about ADHD? Today is a good day. My kids are all hanging out in the same room and being kind to one another. I know it probably won’t last all day but for now it makes my heart smile and I’m trying to just soak it up while it lasts. Usually my son isolates himself in his room, either by choice or because the older two don’t want him by them that day. It breaks my heart.

Momtrying profile image
Momtrying in reply to Partyof6

It is heart breaking. For everyone. I’ve found that the more I learn the easier it is for me to teach other family members. I love Russell BArkleys books, he’s done a lot of work/research with families with ADHD kids. It might a little hard in your family though since you have a three year old. They prob won’t understand too much I’d guess. Yesterday I was crying bc my son was so mean to me when I was trying to ask him to treat his sister nicer, but when I got over it, he apologized and we all played monopoly together. We take the good times when we can!

Sounds like you are trying your best here. I will say the medication route will be trial and error, and the error can be tough, but don’t give up. And when I got my son on a 504 plan I tried to come from the perspective that I wanted everyone in his class to benefit from it, not just, my son needs accommodations.

😊

zatoichi1 profile image
zatoichi1

Right there with you on the days where you feel you've just had too much. Very similar experience with our 13 year old as you have had. As with others, I would recommend medication but in our case, we've tried 7 different medications over the last two years and none of them have done much. He struggled through most of school but then developed severe anxiety at 11. It turns out the anxiety is what is causing the rages, meltdowns, etc. Having been working on this with my son intensely for the last 2+ years, I'm seeing that there has been progress, not only with him but with the family and how we respond to him. There are still those tough days and lots of uncertainty on the future but this struggle has actually made he and I much closer. He sees what I'm doing to help him and when he's in a calm mood, he will tell me that he loves me so much for helping him. Try to enjoy the good times as much as you can and do what you need to lighten the load on the bad times.

4blue profile image
4blue

Hi. I'm new to this as well. When I saw your post, I seriously thought my husband had gotten online and wrote about our son (we're a family of 6 with a 7yr. old son that has ADHD as well). Most I can say is I can relate some. Medication is a big help. We got our son's diagnoses in December last year. And then been trying to find the right medication for him. Some aren't the right ones. But the only best way to say it would be, try a low dose and see how that goes. It's not fun to see your own child go through things because of the bad side effects of the wrong medication. But when they get on the right medication it's a huge help. My son was on a non-stimulant and we lowered it (asked the doctor for it to be lowered) because it didn't seem to be doing much.....well then it got worse (it was almost as if he wasn't even taking medication). It took us having to go in and a different doctor (that actually helped deliver our son) say "what do you think about this mediation" basically. Something else completely. A stimulate. He's tried a stimulate before so we were nervous. But he's improved at his kids church. So that's a big step! One thing to think about when it comes to the medication is, is there a fear from your own life? For my husband, he never had ADHD but was put on ADD medication for years (without a diagnoses from a doctor) until he moved out (and life got better for him). So he was very hesitant and I had to tell him that this is different, we actually got a test (1 1/2-2 hours long) showing that our son actually has it and it's not something that we're making up.

Don't know if this helped. This is my first post on here.

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