ASD support and check-in

[macmars45]

How is everyone doing? Anyone have any challenges or need support? Anyone want to celebrate any successes with us?

I got DS(6) an indoor sensory swing and it really helps him when he's feeling overstimulated or dysregulated! Instead of throwing things, hitting or destroying things he ends up laughing as I push him on the swing. <3

I can share the link if anyone else is interested.

After school today H and I are taking DS to be tested for asthma. I'm planning for the worst and hoping for the best because he struggles with any kind of dr visits. 

[pinkdutchtulips]

It's hard being the parent of a teenager. It's harder being the parent of a teenager who has what seems to be zero impulse control and zero executive functioning skills.

I have finally have the referral for child psychiatry .. fingers crossed. I just want my nightmare to be manageable. I'm in therapy bc as a solo single parent this is ALOT for me to handle in addition to everything else I have to handle. Our home life is chaotic and toxic at this point. I don't want to move in w J until I have a handle on her ... it's super frustrating keeping my life on hold for her.

[cleo29]

K does is not on the ASD, though she has some similar issues with sensitivity, but she was diagnosed with a slew of other things and one of the things that we are dealing with is her explosive anger. her emotions have always been big, but puberty is really doing a number on magnifying things. It is hard on her and it is hard to live with at times (which feels terrible to say or feel).

We are looking into finding her a therapist that specifically works with kids and teens with ADHD and other learning challenges.

[waverly]

DS has SPD. His executive function is not great. He seems to be organized now, and instead of not doing work is writing very light or not totally complete. His tutor seems to be really helping him, helping me to not get angry, and helping our relationship. She works for the school district, so she reached out to all his teachers, and he can email her. The school emails are restricted to school only, so even I can't email him or receive emails from him. So it is great that he can do that and share google docs projects with her.

[mae0111]

DD1 (13) does not have ASD, but trends strongly toward NVLD, which is very similar to ASD (NVLD kids are often misdiagnosed as ASD). Also diagnosed ADHD.

Im struggling with what is normal early teen behavior and what is NVLD/ADHD/Executive Dysfunction. Does she deliberately put her dish into the dishwasher sideways, or can she really not see the pattern? Does she not pick up her room and tell me it’s clean because she doesn’t see the dirty clothes? Or because she doesn’t want to do it? The meltdowns when she is told no - is that emotional dysregulation, or is she just being a spoiled brat? Her therapist is helping me sort through it, but man, it’s tough.

[raleighnc]

Feb 2, 2023 13:29:57 GMT -5 cleo29 said:

I don't know whether they have ever ruled out anxiety, but when we were only treating ADHD for my DD, the explosive anger was still a huge issue. She started therapy and we realized that she was way more anxious than we thought about way more things. After she started on meds and started going more frequently to a new therapist at the same practice, it improved SO much. (One upside of Covid - since the practice switched to virtual appointments, she was able to have weekly appointments since I didn't have to drive her.) I was really afraid of how puberty and middle school would increase her explosions and irritability, but it seems like her anxiety has stayed under control (we had a brief upsurge last fall but that subsided with a small dose increase in her Lexapro). You may have already ruled it out, but anxiety increases a lot with puberty.

[bears]

mae0111 my DD (10) was just diagnosed with NVLD, may also be ADHD (psychologist she worked with said borderline not ADHD, neuropsych we consulted with said classic ADHD for girls). Talking with the neuropsych had the scales falling from my eyes--despite not knowing DD very well, she could accurately describe so many of her behaviors.

We are working on getting her a 504 plan before she starts middle school and I'm trying to figure out some more socialization opportunities for her.

[sonrisa]

DNB had their part of the ADHD evaluation this week and it was hilarious. During my portion I have never answered ‘yes’ so many times in a row. During their part, They’d answer ‘no’ while literally demonstrating the behavior they claimed not to have.

PDQ: the little documentation I’ve been able to find on their health issue says kids with this particular anomaly have ADHD with a few autistic behaviors thrown in. Well, that’s my kid! So far it’s the part that is most in line with what to expect with this deletion. It seems like otherwise my kid is doing better than expected on some measures - this is usually caught as an infant because of all the health complications and intellectual impairments. So now I need to get them screened for the health stuff and find out what is lurking and how seriously. Speech, language problems are usually pretty strong for their cohort but they have an expansive vocabulary and are reading three grades ahead. They’ve been faking it in math so far but are closer to 1st grade level for actual knowledge. they can count on their fingers to get third grade answers. That won’t last.
the cardiac /kidney stuff worries me more than the intellectual and neuro stuff. There are other systems involved but we are still figuring it out.

[sonrisa]

Feb 2, 2023 13:37:40 GMT -5 mae0111 said:

can she really not see the pattern?  she doesn’t see the dirty clothes? 

Do you give her really specific instructions?

My kids do both of these and I've never thought of it as deliberate. I will explicitly teach which things go where and in which orientation and have them practice. I don't just say "clean up your room' = I'll give very specific break down: "put all the dirty clothes in the hamper. Now take the water glasses and put them in the dish washer. Look around - nothing should be on the floor other than furniture legs. Now look at the lego table - is there anything that isn't a lego on it? It needs to be put away." At each of those steps I sometimes need to be even more specific - "pick up *that* pair of pants. see this? It's not a lego. etc. (Now a days, I will sometimes do a "clean your age" where they clean for the number of minutes they are old. That gives me a chance to see which of the cleaning skills have sunk in and might get done spontaneously and what they are completely not seeing/understanding. Those things are what I address when we next clean (I don't follow clean your age with a second cleaning stint. There is always another activity or a few hours between.

[PennyCandy]

My oldest (6) just got an educational diagnosis yesterday. He's seen by developmental peds already. Depending on how she feels about his IEP and the evaluation that was done, she will either go ahead and make a diagnosis or we will test him there too for the medical diagnosis. He also has ADHD and anxiety, and there's a strong possibility of dyslexia. I don't even know where to start. I knew he was a complex kid, but this all feels overwhelming. We haven't really been given any resources so far and don't follow up with developmental peds in person for another 6 weeks. Same for the social worker.

[mae0111]

sonrisa, I do get fairly specific. I will say, "Did you clean up your room?" and she always says yes. Then I ask "Are all of the clothes off the floor and the furniture and either put away or in the hamper?" She will either say yes, or she will go back to her room and deal with 25-50% of the clothes, and then tell me it's all done. So I will go to her room and point out things that were missed, and she will start screaming.

I honestly would not care about her room if it weren't for 2 issues.

1. our cleaning person comes weekly, and I keep telling the kids that it's not her job to pick up after them, it's her job to CLEAN. So they have to pick up so she can clean. If she doesn't pick up, the room does not get cleaned. And she can't go too long without a clean because of allergies.

2, She cannot find ANYTHING. I have labeled all of her drawers, and one says "Sports uniforms" (because another couple are for school uniforms). When she does not put her basketball uniforms in her sports uniform drawer, she can't find them when needed. And then she melts down. I have tried to encourage her to organize things in a way that makes sense to her, but she will not. She just tosses everything around or stuff them into whatever drawer can fit something, and then screams that someone stole her uniform when it's not where it should be.

[cleo29]

Feb 3, 2023 8:43:57 GMT -5 raleighnc said:

Feb 2, 2023 13:29:57 GMT -5 cleo29 said:

I don't know whether they have ever ruled out anxiety, but when we were only treating ADHD for my DD, the explosive anger was still a huge issue. She started therapy and we realized that she was way more anxious than we thought about way more things. After she started on meds and started going more frequently to a new therapist at the same practice, it improved SO much. (One upside of Covid - since the practice switched to virtual appointments, she was able to have weekly appointments since I didn't have to drive her.) I was really afraid of how puberty and middle school would increase her explosions and irritability, but it seems like her anxiety has stayed under control (we had a brief upsurge last fall but that subsided with a small dose increase in her Lexapro). You may have already ruled it out, but anxiety increases a lot with puberty.

I think meds will definitely help, in addition to talk therapy.  I definitely know she has anxiety and depression, both of which were diagnosed during her screening.  I am so glad that you have seen progress, this gives me a good boost of optimism.

Even with in regards to myself, knowing what I know now, I can see how I was a very anxious child, but more so at night.  Did not sleep well, had to have lights on, had a very hard time separating from my mom, etc. I think the depression came after puberty. And as an adult, with far more responsibilities I feel the ADHD even more. It's nuts. 

[sonrisa]

Feb 3, 2023 10:40:21 GMT -5 mae0111 said:

sonrisa , I do get fairly specific. I will say, "Did you clean up your room?" and she always says yes. Then I ask "Are all of the clothes off the floor and the furniture and either put away or in the hamper?" She will either say yes, or she will go back to her room and deal with 25-50% of the clothes, and then tell me it's all done. So I will go to her room and point out things that were missed, and she will start screaming.

I honestly would not care about her room if it weren't for 2 issues.

1. our cleaning person comes weekly, and I keep telling the kids that it's not her job to pick up after them, it's her job to CLEAN. So they have to pick up so she can clean. If she doesn't pick up, the room does not get cleaned. And she can't go too long without a clean because of allergies.

2, She cannot find ANYTHING. I have labeled all of her drawers, and one says "Sports uniforms" (because another couple are for school uniforms). When she does not put her basketball uniforms in her sports uniform drawer, she can't find them when needed. And then she melts down. I have tried to encourage her to organize things in a way that makes sense to her, but she will not. She just tosses everything around or stuff them into whatever drawer can fit something, and then screams that someone stole her uniform when it's not where it should be.

I would suggest getting specific about cleaning on the front end, rather than asking afterwards "Did you clean your room?" I'd walk into her room with her the night before the cleaning lady comes. Set a timer and tell her you are going to work together to get the room ready. Then, while in the room give her the specific instructions: "let's start by getting all the dirty clothes up. Okay, now pick up any garbage. Okay now...." and put in the 13 minutes. It's annoying but less frustrating and time consuming in the long run. (And I wouldn't actually pick up anything myself). I find I say something like "pick up all the clothes, and my kid will miss some of them *even when I can see it with my eyes as they are talking*. Sometimes I'll say something like "I see six more clothes to pick up." Or I'll point to items and wait for them to register.

When we do laundry - I presort categories into laundry baskets right out of the dryer then have the kids come out and fold all of their ___ at once. We use bins instead of drawers so I have them bring out the relevant bin and put the folded clothes right into it. Then put that back before moving on to the next category. In the case of the gym clothes, I'd sort those separately from the school uniforms and weekend clothes and have her fold take those in separately - and go with her to watch her put them into the drawer. (or give her a separate bin that she can bring out). 

And purge - if she can't find anything, she has more things than she can handle. 

(*My kid has low awareness on so many things that I'm not surprised they can look at a room and not see the socks on the floor. They fell out of their seat wiggling yesterday at their ADHD evaluation all while saying they have no trouble sitting still)

[cleo29]

sonrisa, That is how K's report read (in terms of ADHD with some autistic behaviors). Can you tell me what the deletion is?

[cleo29]

Feb 3, 2023 11:15:11 GMT -5 sonrisa said:

Feb 3, 2023 11:09:05 GMT -5 cleo29 said:

sonrisa , That is how K's report read (in terms of ADHD with some autistic behaviors). Can you tell me what the deletion is?

PDQ obviously.

A lot of what you say you see in your child, is what I see in K. We knew her Galactosemia impacted her learning, but I wonder if there is something else too. 

[mae0111]

sonrisa, thank you! I've tried some of that in the past, and she just gets extremely frustrated with me. DD2 is similar, but is so willing to accept help. DD1 is just... not. It's really hard.

I also try to have the kids sort laundry as they go. They each have 3 bin laundry hampers, and I labeled DD1's bins... and she still won't sort it. I wash, dry, fold, and the kids are responsible for putting away. Drawers are all big and labeled. DD2 (ADHD, executive dysfunction, no NVLD) tries hard to keep things organized, because she feels anxious when things are messy. DD1 says that she doesn't care, but gets VERY anxious if she can't find things.

I agree that she has too much stuff. She is a bit of a hoarder. I need her to be out of the house for a full day in order to get into her room, because she won't willing get rid of anything. It's now getting to a point where her things are starting to spread around the house, and when I try to contain them, she gets very angry because it's HER HOUSE and she should be able to put her things WHEREVER SHE WANTS.

It's a process...

[sonrisa]

mae0111 It is really hard, isn't it? We got a tip from a therapist last week that I like for helping get things under control when my kid gets worked up(or get me centered again when they aren't calm).

Three things that are helping:

1) I will push my palms together, wiggle my toes in my shoes all while taking a deep breath or two. For me, it works much better than just a deep breath. It also helps my older one when she has stage fright.

2) 3/3/3: name 3 small things you can see, three things you can hear, and wiggle 3 body parts. (I have my kid do this sequentially: I see __, I hear __, I wiggle ___, I see __, I hear __ ...)

3) *and this is the most important* We talked about both of these during a calm time and as things they can do *for themselves.* It's not something you are doing for me. It's something to make you feel better. (I mentioned other things they have learned over the years that make their lives easier or more fun). Because there is nothing that gets my kids more riled up than me telling then to calm down. or CALM DOWN! lol.

So far it's helping...

[sonrisa]

Feb 3, 2023 11:22:50 GMT -5 cleo29 said:

Feb 3, 2023 11:15:11 GMT -5 sonrisa said:

PDQ obviously.

 I wonder if there is something else too. 

I feel like this is where I was when we sought the ASD diagnosis: I felt like there was more going on, but ASD symptoms were in the mix and contributing to their problems navigating social interactions and school. Now that we are learning more some of the musculoskeletal stuff the doctor brushed off seems to be involved. And we've never looked into kidney malformation or heart defects before. So we'll see.

Thinking of my kid as outperforming severe intellectual disability that can come with these deletions (we are very lucky there) rather than underperforming neurotypical kids has really shifted how these challenges feel. 

[cleo29]

Feb 3, 2023 11:54:28 GMT -5 sonrisa said:

Feb 3, 2023 11:22:50 GMT -5 cleo29 said:

 I wonder if there is something else too. 

I feel like this is where I was when we sought the ASD diagnosis: I felt like there was more going on, but ASD symptoms were in the mix and contributing to their problems navigating social interactions and school. Now that we are learning more some of the musculoskeletal stuff the doctor brushed off seems to be involved. And we've never looked into kidney malformation or heart defects before. So we'll see.

Thinking of my kid as outperforming severe intellectual disability that can come with these deletions (we are very lucky there) rather than underperforming neurotypical kids has really shifted how these challenges feel. 

It makes me wonder. K was born with a hole in her heart (not totally abnormal for a baby born before 40wks, but she also has a narrow ventricle.  She had asthma and she will have to see an OT for issues for writing, but in the report it does mention something about muscle weakness or something. (the report is 36 pages and now it is all running together in my head). 

[raleighnc]

Feb 3, 2023 10:44:54 GMT -5 cleo29 said:

Feb 3, 2023 8:43:57 GMT -5 raleighnc said:

 

I don't want to jinx myself, but she goes weeks without explosively yelling at me and her sister now. (Being purposely annoying to her sister is a work in progress.) She can usually ask me for help with homework without going through a despairing meltdown first. She only complains for a couple of minutes about the other kids at school are loud and annoying - it used to be like a 30 minute rant all the way home. All of those were unheard of pre-lexapro. The ADHD meds helped a little with the impulsive speech/lack of filter, but you could tell she was still thinking all the irritable thoughts. Now she's just so much more chill and able to shrug stuff off. So there's hope!

[raleighnc]

Feb 3, 2023 9:26:33 GMT -5 bears said:

I'm trying to figure out some more socialization opportunities for her.

I'm not sure where you are in NC, but my DD did an amazing group therapy class with an OT and SLP in Durham that was based on acting and improv techniques. (She has NVLD and probably social (pragmatic) communication disorder, so social interactions are hard.) It was lots of practice about reading nonverbal cues and how to have a dialogue and not just a monologue. DD needed someone to deliberately explain and demonstrate these concepts, and she had so much fun. It was out of network for us and 40 minutes away, but it was the best money we ever spent on therapy. They have other programs at their other locations that are also probably good. Sorry if this is out of your geographic area!

emergepediatrictherapy.com/therapeutic_programs/therapeutic-group-programs/

[mysteriouswife]

This week has been hard. The ice storm had schools closed for 3 days. We were WFH and pretty busy. We could not provide the structure and attention DS needed. He had a major meltdown last night that ended in panic attacks. This caused a sleepless night and him sleep walking. He was collecting blankets and piling them up. He came and took DH’s off the bed. We were laughing while chasing a zombie through the house putting blankets back. I suspect today will be another stressful day.

His evaluation keeps getting pushed for various reasons. He was sick on the first date. The makeup date was this past Tuesday. Waiting on a new date.

[macmars45]

Anyone have tips for helping me get my autistic DS(6) to take meds? We bribe with success on occasion. He has sensory food challenges and barely eats as it is so I'm afraid putting them in something he likes will result in him never eating/drinking that again. H suggested we put the asthma med in his ensure and I shut that down really quickly because that's how he's getting most of his nutrition right now. (We need him to take his chewable asthma med and use an inhaler with a spacer.)

[mysteriouswife]

Feb 4, 2023 9:51:32 GMT -5 macmars45 said:

Anyone have tips for helping me get my autistic DS(6) to take meds? We bribe with success on occasion. He has sensory food challenges and barely eats as it is so I'm afraid putting them in something he likes will result in him never eating/drinking that again. H suggested we put the asthma med in his ensure and I shut that down really quickly because that's how he's getting most of his nutrition right now. (We need him to take his chewable asthma med and use an inhaler with a spacer.)

Oh I am here for answers on this one! Meds are a nightmare for us too. Hopefully someone has a tried and true tip

[macmars45]

I'm sorry you struggle with giving meds to your kid too mysteriouswife.

[raleighnc]

Feb 4, 2023 9:51:32 GMT -5 macmars45 said:

Anyone have tips for helping me get my autistic DS(6) to take meds? We bribe with success on occasion. He has sensory food challenges and barely eats as it is so I'm afraid putting them in something he likes will result in him never eating/drinking that again. H suggested we put the asthma med in his ensure and I shut that down really quickly because that's how he's getting most of his nutrition right now. (We need him to take his chewable asthma med and use an inhaler with a spacer.)

This isn't as much a tip as something I didn't realize for a long time, but DD2 had a tongue thrust and various muscle weaknesses and that deformed her palate and even though she seemed to eat okay, she actually didn't form the bolus of chewed food correctly and she was physically incapable of trapping water the way you need to do to swallow pills. This also caused a lot of food that wasn't comfortable to eat. She did oromyofascial speech therapy for about six months and it made a world of difference. I'm sure you are working on the sensory issues, but you could see if there are additional issues that could be helped.

We also did some meds that were capsules that we emptied onto applesauce or peanut butter. Not sure if you have tried different forms of the medicine that might be easier to add to food. I'm so sorry. It's really frustrating.

[regencygirl]

I usually lurk, but I don't have a great support system around me right now and I need to vent. DS9 is diagnosed Level 2 Autism. We had issues in Kindergarten that lead to us seeking the diagnosis, 1st and 2nd he was fine in a mainstream class in a private school, this year his behavior has ramped up to where he was having meltdowns in class and hit a child. This lead to us having to remove him from the private school (That's an entirely other vent for another time).

DS has been playing travel soccer for a year now. He has some talent, but he's experienced some issues with the rules and following along in training. We've always been able to handle it. I started the team because I wanted him to have a fair shot at playing travel soccer. I had talked to my team parents about his possible behaviors and how that might affect the team and how they could help. Everyone was on board and supportive.

My assistant coach has been great up until this past Sunday. She recently had a loss of a close family member and is grieving, so I've been trying to keep this in mind but what she said on Sunday really hurt me. DS started to meltdown on the field, I went to pull him off. She started yelling at him "I'm tired of this, you're so disrespectful and rude." Then she turned to me and said "God bless you" as my husband was talking DS through a calming routine. Part of me feels like she said it in a very disrespectful tone.

I let it go on Sunday but it's been eating me up. Because I'm thinking - grieving or not, if she said it Sunday, has she been thinking this all along? DS has very few friends. This team has been a lifeline for him - the kids and parents seemed to accept him. I don't know if I'm over-reacting to her comments, or making excuses for my son or what to think. It's eating me up and I have to figure out what to do / say before tomorrow b/c we have practice.

[macmars45]

(hugs) regencygirl . I'm so sorry that happened. I would approach your asst coach and tell her what she said was hurtful, unprofessional and sets a bad example for the other kids. Not to mention how it affects your DS' confidence/view of himself.

ETA: if you're in the US, see if you have a Parent 2 Parent Program in your state/county/city. They offer so much support and resources to families with kids who have any kind of special needs. My local program is invaluable to me.