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Autism - Support Across the Spectrum Autism - Support Across the Spectrum

New to the group and about to lose my mind

Posted by on Apr. 27, 2014 at 11:53 PM
  • 20 Replies

I have a 5 year old son who we suspect is on the spectrum, but are on a waiting list to have him tested. I am about to lose my mind though and I need some help on how to cope. His dad and I are split up and have been since he was a baby. We currently have a 50/50 visitation schedule in place so he is constantly bounced from house to house. We have 2 different sets of rules as they let him do whatever and go to bed when ever at their house. I on the other hand have rules and bedtime is 8pm no questions asked. His behavior is becoming too much for me to cope with though. He refuses to nap, but if he gets too tired he throws these huge melt down fits. He can't communicate with me at times that he is hungry so he has melt downs and once I can finally get him calmed down he can then tell me he is hungry. He was diagnosed in November with ADD and I have pushed his pedi since then because I felt like there was something else going on. We just 2 weeks ago got the ok to have him tested for autism. I am at whits end now though. Take tonight for example. I fed him dinner at approx 6:30 and he was in the bath by 7:30. Everything was on schedule. He got out of the bath, got pj's on and did his breathing treatment. I tucked him in for the night. Within 5 minutes he was up because he was thirsty, then he wanted to sleep on the floor. I told him no and that started the whole melt down that lasted 2.5 hours! I put him back in bed and he threw a huge fit about how he didn't like his bed and he wanted to sleep on the floor. I went back to the living room and he comes out with his blanket. He said he needed to fold it. I told him no and took him back to bed. I go and sit back down and I hear him in the room playing. I go put him back in his bed and give him a clonidine and made him lay down again. After another hour of yelling and screaming I decided to just load him into the car and drive around until he was asleep. I needed a break and I knew I wasn't going to get one with him still carrying on and I didn't know how much longer he would keep on. He fell asleep in the car and I carried him up 3 flights of stairs and got him in bed. I just don't know how to cope with it. When he is throwing these fits I don't know what to do to calm him down if I am not calm myself. I guess I just needed to get that out and see if anyone has any advice on what to try or how to keep calm when he is having these melt downs.

by on Apr. 27, 2014 at 11:53 PM
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Replies (1-10):
TheJerseyGirl
by Michele on Apr. 28, 2014 at 6:19 AM

 Even though the diagnosis isn't here yet, I know you know. I think a major problem is the lack of routine from going to his dad's house to yours. He needs the structure or there are going to be more and more meltdowns.

I'm the worst at giving advice for those! My son actually doesn;t have them...or if any, they are mini meltdowns. The most I do is hold him, talk calmly (even thought I'm about to go cuckoo) and offer him something he really loves...a food, an activity, etc.

It's hard, I know, and I think as they get older it gets much easier because you know what works for them. Hang in there, mama!!!

Ajisai43
by Bronze Member on Apr. 28, 2014 at 7:49 AM
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Wow, it sounds like you two are really having a rough time and I am sorry.  I have been there and done that and it is exhausting and frustrating and sometimes heartbreaking.  If your son is verbal, I might suggest asking him why he needs to lie on the floor instead of his bed.  It could be something as simple as the texture of the sheets bothering him, or he can or can't see something from his bed.  If you can figure out what is causing him to behave in certain ways then you can figure out how to accommodate or help him work through the issue.  And if being told "no" leads to meltdowns more often than not, I would choose carefully.  I mean is there any reason he can't sleep on the floor? I used to be very rigid and kind of this is the way it is (before my son was diagnosed Asperger's and ADHD) and was all about enforcing the "rules" and did just what you are doing.  And it wasn't working and it wore the both of us out.  If you can take a step back, take a few breaths and put on your detective cap maybe you can find out what the core issue is and then take it from there.  Sometimes our kids are so overwhelmed by the end of the day they have a hard time knowing what it is they need to settle down and go to sleep.  Giving in to what he needs can be a life saver and if is something you are not comfortable with him doing then you can slowly change it to make it work for the both of you.  It is a long, hard road, but the pay offs are so worth it!

And is there any chance of the dad coming in while your son is being evaluated? Hearing form a professional that your son needs consistency at both homes may make more of an impact than your asking him nicely? Just thinking out loud here and am sending some calming vibes your way.  Things will get better once you know what your are dealing with, and then learn how to best deal with them.  Best of luck and hang in there! :)

darbyakeep45
by Darby on Apr. 28, 2014 at 7:56 AM

Hugs mama...I know this is hard.  Especially with your son being at 2 different places and given different rules. 

indyrunner
by Member on Apr. 28, 2014 at 9:17 AM

You have already received some good advice.  I would add that many kids at 5 years old don't take naps.  If he is napping late in the day, then 8PM may be too early for bedtime.  


Also, on the being hungry part, just try to make sure that he doesn't go too may hours without food.  Healthy snacks between meals is a great way to get nutrition in our kids and keep blood sugars more even.


As someone else said, let him sleep on the floor, as long as he is safe.  He'll climb back up into bed when he's ready for a softer surface.


Try to keep your calm, especially at bed time.  No one wants to be yelling or yelled at at the time of day when you should be winding down.


Hang in there.  It's all easier said than done, but you'll figure out what works and what doesn't with continuous trial and error.

rebel_mommy09
by New Member on Apr. 28, 2014 at 10:57 AM
Thanks everyone! He said that he doesn't like sleeping in his bed because of the shadows. I can't figure out what he means though. We have thick curtains over the window and he has 2 night lights. His dad doesn't want him tested so as for him coming in while he is being evaluated it probably won't happen. I am in the process of trying to get a more stable visitation schedule for him so that it will be easier on him when he starts school this year.
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johnns
by Johnna on Apr. 28, 2014 at 11:42 AM
Good advice. My 5yro doesn't take naps- if she does, it's a late night getting her to bed- which makes it hard to get her up for school.
Keeping calm is key, though very hard. They feed off our energy. I rub/scratch Sallys back to get her to mellow out for bed- it's worked a couple of years now.
Hang in there, best of luck to you!

Quoting indyrunner:

You have already received some good advice.  I would add that many kids at 5 years old don't take naps.  If he is napping late in the day, then 8PM may be too early for bedtime.  

Also, on the being hungry part, just try to make sure that he doesn't go too may hours without food.  Healthy snacks between meals is a great way to get nutrition in our kids and keep blood sugars more even.

As someone else said, let him sleep on the floor, as long as he is safe.  He'll climb back up into bed when he's ready for a softer surface.

Try to keep your calm, especially at bed time.  No one wants to be yelling or yelled at at the time of day when you should be winding down.

Hang in there.  It's all easier said than done, but you'll figure out what works and what doesn't with continuous trial and error.

MomOfOneCoolKid
by Gold Member on Apr. 28, 2014 at 11:43 AM
1 mom liked this

Hugs mama.

1) I think a lot of us have been there.

2) I would recommend the book, "The Explosive Child" by Ross Greene

3) He takes clonidine and he still has a hard time sleeping? I would tell his doc. Medication and treatment for adhd vs. asd isn't that different. What type of doc rx'd the clonidine?

Does he go to K or special ed preschool? Does he have ABA?

rebel_mommy09
by New Member on Apr. 28, 2014 at 12:48 PM
Thanks! I will look into that book. He has explosive tantrums in which sometimes he becomes violent so his pedi prescribed the clonidine to give when he is having those fits. When we went in 2 weeks ago she said that she wanted to start giving it at bedtime since he wasn't sleeping very good. We are on a wait list to have him evaluated for asd, but I have no clue how long it's going to take. He is in daycare and they have a preschool thing there. He goes Monday-Wednesday as his dad has him Thursday and Friday and won't take him. He couldn't start regular school this year because his dad said he wouldn't take him on his days if I enrolled him in my school district. We live 45 minutes apart. I'm not sure what ABA is

Quoting MomOfOneCoolKid:

Hugs mama.


1) I think a lot of us have been there.


2) I would recommend the book, "The Explosive Child" by Ross Greene


3) He takes clonidine and he still has a hard time sleeping? I would tell his doc. Medication and treatment for adhd vs. asd isn't that different. What type of doc rx'd the clonidine?


Does he go to K or special ed preschool? Does he have ABA?

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lady_katie
by Silver Member on Apr. 28, 2014 at 12:51 PM
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I would also make sure that he has enough down time during the day. People on the spectrum get very overwhelmed by everyday things and need time to process and recover. Without that time, we have trouble regulating ourselves.
indyrunner
by Member on Apr. 28, 2014 at 1:25 PM

Does his room face a road/driveway?  Maybe he is seeing headlights of cars passing by the house at night?  


The other day, my little boy (also age 5) pojnted at the floor inside his brother's daycare and asked what it was. and this is how the conversation went:


me: It's the floor

him: no.  whats this thing and he make a gesture with his hands (forming the shape of a square.

me: Oh, it's a vinyl tile square on the floor.

him:  (getting more agitated)  NO.  this...and he outlined a tiny skinny rectangle.

me:  (looking up) Oh, it's the reflection of the flourescent light bulb (that you can't see when you are looking up at the light because it is incased with a standard cover...but on the shiny floors, you could see the reflection of the flouresent light bulbs.)


It's amazing what our kids can see.  Things that are right there in front of our eyes, but we have a way of tuning them out.  If he says he is bothered by the shaddows, I would put money on it that there is definitely a shaddow or perceived shaddow that he sees at night in his room.


Good luck figuring it out.  You will and it will get better.

Quoting rebel_mommy09: Thanks everyone! He said that he doesn't like sleeping in his bed because of the shadows. I can't figure out what he means though. We have thick curtains over the window and he has 2 night lights. His dad doesn't want him tested so as for him coming in while he is being evaluated it probably won't happen. I am in the process of trying to get a more stable visitation schedule for him so that it will be easier on him when he starts school this year.


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