Jump to content

Menu

Today I want to cry


wendyroo
 Share

Recommended Posts

Yesterday Peter ran his two year old brother into the street while I was closely supervising them.  Spencer was screaming, "NO!!  NO!!" and I was yelling at Peter to stop, but he kept right on chasing while grinning wildly and laughing maniacally.  When I asked him what he was doing, he said that he wanted to give Spencer a hug.  Spencer didn't want a hug, I said.  Spencer was screaming no, I said.  Peter replied, "But I wanted to give him a hug."

 

Later I had to help Peter hand over hand sweep up most of his lunch.  For some reason he is a much messier eater than either the 2 or the 4 year old.  When Peter eats, fully half of his food ends up all over him, his chair and the floor.  He is certainly physically able to sweep it up (well, and to eat neatly to start with if he chooses to), but he lacks the executive function to actually do it.  After less than a minute he gets overwhelmed, bored, distracted, etc.  Yesterday, he started perseverating, "That was a surprise!!! <cackle, cackle, cackle>"  over and over as I puppeted him through the clean up actions.

 

In the afternoon he asked to go out in the (fenced) backyard.  The younger boys had played out there for several hours in the morning, and Peter had asked several times to join them, but there is no way he can be safely left with any of his siblings, so I repeatedly said no.  But in the afternoon the younger boys were in rest time, so I allowed Peter to play outside independently.  When I went down 30 minutes later, he had dragged the hose inside the house and soaked most of the basement carpet.  Not damp, but gallons and gallons and gallons of water.  He cannot in any way articulate why he did this.

 

I made it through yesterday knowing that today I was taking Peter to see a new psychiatrist who maybe would be able to offer some help.  We had to take Peter off of the one medication that seemed to be curbing his impulsiveness a tiny bit because it was causing massive weight gain.  We are desperate for help.

 

This morning the psychiatrist's office called to say they were cancelling our appointment because the doctor is out sick today.  Next available appointment is in 6 weeks.   :crying:

 

Wendy

Link to comment
Share on other sites

:grouphug: :grouphug: :grouphug:

 

It is discouraging and exhausting to have to keep coping with problems even after you feel beyond your ability to cope any more. And to need help but not be able to find it. Sometimes crying helps, a little. I hope you are able to get into to see the doctor sooner than that, and that they have some new ideas to try.

  • Like 3
Link to comment
Share on other sites

So sorry! I agree with pp who suggested trying to get on a cancellation list. I've had good luck with that in various medical offices. It is a bummer that they aren't more proactive in trying to get you in sooner when it is their fault that you have to wait.

 

My 7 year old ADHD kid broke a window last night. He was mad at his younger brother (who was being kinda annoying). But he just started flailing his legs around in anger, and he forgot that behind that curtain by the bed there is a WINDOW! Luckily no one was hurt (curtain blocked the glass), but wouldn't you know it, DH is out of town. A neighbor friend came over to help me move the heavy bunk bed out of the way so we could clean up.

Edited by kirstenhill
Link to comment
Share on other sites

I'm so sorry it's hard right now.   :(  What are your options, in addition to the medication, to get some help?  We've brought in a behaviorist to work with my ds.  They'll send "tutors" during the day to work with him.  It's ABA.  Would your insurance fund that?

Edited by OhElizabeth
  • Like 2
Link to comment
Share on other sites

I am so sorry, Wendy. You deserve a cry and a hug and most definitely a day off. Reading your story made me want to cry and filled me with anxiety for you. It is hard and some days are really, really rough. I can't tell you how many days I spent on my knees crying and praying for the strength to face the next day. ((((Hugs)))) I was always reminded that God blessed our ds into our lives and His plan is far better than anything I can envision.

  • Like 4
Link to comment
Share on other sites

 

 

In the afternoon he asked to go out in the (fenced) backyard.  The younger boys had played out there for several hours in the morning, and Peter had asked several times to join them, but there is no way he can be safely left with any of his siblings, so I repeatedly said no.  But in the afternoon the younger boys were in rest time, so I allowed Peter to play outside independently.  When I went down 30 minutes later, he had dragged the hose inside the house and soaked most of the basement carpet.  Not damp, but gallons and gallons and gallons of water.  He cannot in any way articulate why he did this.

 

 

 

This sounds very troubling to me.  Are you saying that you let your 4year old and 2 year old play alone in the backyard by themselves for hours?   This sounds like a recipe for disaster to me.  

 

I don't understand why all 3 boys aren't able to play in the backyard in the morning when you can supervise all of them.  (The chasing incident sounds like it didn't happen in the fenced backyard.)   They could have separate activities, but stil be in the same yard, and then in the afternoon when the younger boys are resting you could be doing lessons or whatever with Peter.  Or maybe if he's tired from playing in the morning, you could get him to "rest" with a quiet activity for a little while...but I have 2 with autism so I know that might not be realistic! 

 

I'm sorry about the doctor canceling the appointment!  And I hope you were able to get the water damage taken care of.  You must be exhausted. 

  • Like 1
Link to comment
Share on other sites

This sounds very troubling to me.  Are you saying that you let your 4year old and 2 year old play alone in the backyard by themselves for hours?   This sounds like a recipe for disaster to me.  

 

I don't understand why all 3 boys aren't able to play in the backyard in the morning when you can supervise all of them.  (The chasing incident sounds like it didn't happen in the fenced backyard.)   They could have separate activities, but stil be in the same yard, and then in the afternoon when the younger boys are resting you could be doing lessons or whatever with Peter.  Or maybe if he's tired from playing in the morning, you could get him to "rest" with a quiet activity for a little while...but I have 2 with autism so I know that might not be realistic! 

 

I'm sorry about the doctor canceling the appointment!  And I hope you were able to get the water damage taken care of.  You must be exhausted. 

 

I don't think it was nearly as sinister as you are imagining.  The younger boys are almost 3 and 5 and they enjoy playing together...as long as Peter isn't around.  No matter how closely I supervise, Peter constantly hits, grabs, throws sand, badgers them because they are playing "wrong", sprays the hose in their faces, shoves them out of the sandbox, etc.  Peter cannot be near any of his siblings and he cannot be alone.  The little boys stay as far from Peter as possible, but he just follows them around tormenting them...during meals, during walks, in the car, etc.

 

The backyard is full of fun stuff to do and it directly connects to the huge basement play room.  The younger boys happily play in and out for a while after breakfast while I tend to the baby, do half an hour of school with Peter, throw in a load of laundry, clean a bathroom and all the other stuff that has to get done to keep the house running.  I can see the whole backyard from the windows and I can hear everything that is going on out there and in the basement.  Periodically I walk down to see what they are up to, but I have to literally take Peter by the hand, lead him down with me so he doesn't draw on the walls or suffocate the baby while I am gone and then hold his hand the whole time we are down there because he truly cannot stop himself from torturing the little boys even during a 5 minute check-in visit.

 

I do strongly encourage the younger boys to play downstairs for 30-60 minutes after breakfast because I really do have things that I MUST get done that cannot be safely accomplished if they are in the same area as Peter, but after that they are free to come up.  Most days, though, they opt to play together for a couple hours...sadly, I suspect that it is because they enjoy the Peter-free peace.

 

Wendy

  • Like 5
Link to comment
Share on other sites

I don't think it was nearly as sinister as you are imagining.  The younger boys are almost 3 and 5 and they enjoy playing together...as long as Peter isn't around.  No matter how closely I supervise, Peter constantly hits, grabs, throws sand, badgers them because they are playing "wrong", sprays the hose in their faces, shoves them out of the sandbox, etc.  Peter cannot be near any of his siblings and he cannot be alone.  The little boys stay as far from Peter as possible, but he just follows them around tormenting them...during meals, during walks, in the car, etc.

 

The backyard is full of fun stuff to do and it directly connects to the huge basement play room.  The younger boys happily play in and out for a while after breakfast while I tend to the baby, do half an hour of school with Peter, throw in a load of laundry, clean a bathroom and all the other stuff that has to get done to keep the house running.  I can see the whole backyard from the windows and I can hear everything that is going on out there and in the basement.  Periodically I walk down to see what they are up to, but I have to literally take Peter by the hand, lead him down with me so he doesn't draw on the walls or suffocate the baby while I am gone and then hold his hand the whole time we are down there because he truly cannot stop himself from torturing the little boys even during a 5 minute check-in visit.

 

I do strongly encourage the younger boys to play downstairs for 30-60 minutes after breakfast because I really do have things that I MUST get done that cannot be safely accomplished if they are in the same area as Peter, but after that they are free to come up.  Most days, though, they opt to play together for a couple hours...sadly, I suspect that it is because they enjoy the Peter-free peace.

 

Wendy

:grouphug:  :grouphug:  :grouphug:

  • Like 1
Link to comment
Share on other sites

This sounds very troubling to me.  Are you saying that you let your 4year old and 2 year old play alone in the backyard by themselves for hours?   This sounds like a recipe for disaster to me.  

 

 

Her backyard is fenced in. My kids also played alone in the fenced yard for long periods of time at that age. Of course you look and check on them, but that's different from being outside with them all of the time. 

 

I think there is tremendous value in young children playing independently. 

  • Like 9
Link to comment
Share on other sites

Her backyard is fenced in. My kids also played alone in the fenced yard for long periods of time at that age. Of course you look and check on them, but that's different from being outside with them all of the time. 

 

I think there is tremendous value in young children playing independently. 

I agree.  And I think it is also beneficial for them to have some space from a challenging sibling that does not mean to hurt and harass but does so frequently. 

 

Wendy, huge hugs of support to you and your family.  I applaud you for trying so hard to continue to provide your children, all of them, with a healthy, loving and safe home under extremely difficult circumstances.

  • Like 3
Link to comment
Share on other sites

I am so sorry. I don't know what it is like in your area, but our county has services to help kids in an emergency. Not sure where the hose would fit -- iirc, the examples are things like punching in walls, destroying property. I have never had to use, thank goodness, but I heard that they are good. Also buried deep in the website. Would you have access to anything like that?

 

 

http://www.careplusnj.org/psychiatric-emergency-screening-program/

 

ETA

I used to volunteer for a teen crisis hotline. We had lists of other hotlines for different needs. So perhaps starting with hotlines until you find the fight place might be one idea. The first call will be the hardest, but it will get easier.

Edited by Alessandra
Link to comment
Share on other sites

Have you connected with any online or IRL autism support groups. It is really hard for those who don't live with the situation to understand it. Group support can also keep you updated on treatment options and behavioral techniques that others have actually tried. Finding a third party (therapist?) for you to talk to is also helpful. You can discuss how to handle situations in a neutral and confidential environment. Just having someone who is solely concerned with your feelings is helpful when your life revolves around managing others' feelings. 

Link to comment
Share on other sites

Wendy,

 

I can completely relate to your post. My ds did not exhibit behaviors to those extremes at 7, but he did when he hit puberty. At 7 he was just hyper to the extreme. Anyway, his younger siblings started to exhibit symptoms of severe distress--running and hiding at the sound of his voice and becoming physically ill. It was a horrible situation to be in trying to juggle their well-being with his.

 

I am going to give you a piece of advice that probably goes against every bone I n your mama's body, but it was the first action we took that actually led to real help being offered to our ds. The next time he becomes aggressive or out of control, contact your insurance company's mental health division and tell them he is out of control and that he needs to be hospitalized. Having our son committed opened up all the doors we had been hitting that were closed with months and months of waiting. Every service we needed suddenly became available and all additional testing that the insurance company had been giving us problems over was approved.

 

Fwiw, ignore the criticism that somehow letting your little kids play in peace without him is somehow wrong. ((((Hugs)))) If someone hasn't dealt with a physically out of control child who knows no boundaries, they don't have a clue how traumatic it is for the siblings. Kudos to you for finding a way to protect them from his stressful behaviors.

Edited by 8FillTheHeart
  • Like 5
Link to comment
Share on other sites

OhE, that is not the situation at all in my state. We do not have an insurance mandate for ABA or autism, and our governor rejects Medicaid (or Medicare if I am confused) funds, so our state does not provide coverage through Medicaid (or Medicare).

 

So, that is a wonderful option where it is available, but it is not like it is available everywhere.

 

There are also very underserved rural areas where services just are not very available.

 

Even with ABA, sometimes kids need more. Sometimes parents do need to make those kinds of calls.

Edited by Lecka
  • Like 2
Link to comment
Share on other sites

We worked directly with our insurance's mental health division.

 

I would not have known this was an option.

 

My son wasn't quite to this point, but he was difficult enough that I needed services and help and had no idea how to get them. Autism wasn't even on the radar. I was terrified (for good reason given other experiences) that all the blame would be placed on me and my child taken away.

 

Thanks to all of you who continually offer concrete steps (that I often still don't realize exist) for getting help to people who need it. It's hard enough to stay on top of things, but worrying about how to actually get what you need adds to that burden as well.

Edited by kbutton
  • Like 2
Link to comment
Share on other sites

 

Some of us actually understand what you are saying.

 

That's why I mentioned that it can get as extreme as having the police involved, because I *do* understand.  

 

Like Lecka said, a lot depends on your insurance, what your state laws provide, etc.  I think there's also this culture of homeschooling that wants us to do everything ourselves, by ourselves.  So not only is there the question of whether we can get access to services, but then whether we *want* the services.  A lot of homeschooling is predicated on us being less qualified but on loving through it, that our love will help us find things and get through it.  To say I'm going to need more help, I need outside help, that's hard.

Link to comment
Share on other sites

That's why I mentioned that it can get as extreme as having the police involved, because I *do* understand.  

 

Like Lecka said, a lot depends on your insurance, what your state laws provide, etc.  I think there's also this culture of homeschooling that wants us to do everything ourselves, by ourselves.  So not only is there the question of whether we can get access to services, but then whether we *want* the services.  A lot of homeschooling is predicated on us being less qualified but on loving through it, that our love will help us find things and get through it.  To say I'm going to need more help, I need outside help, that's hard.

 

I didn't read your post that way.  It sounded like you were suggesting that ABA was easily accessible and that she could just make a phone call and get ABA therapists in her home immediately and that things don't need to escalate to the point of calling the police.  I don't know how things function where you live, but getting access to services in the THREE different states we have lived in with ds has never been as simple as a phone call. 

 

FWIW, I think Wendy's described situation is already at a critical point b/c her other children's needs and safety should be the highest priority at this point.  If he would hurt the baby if unobserved, that is a serious situation and I would seek direct intervention at this point.  Waiting for an appt is not the approach I would take.  I would probably first call the dr's office that cancelled the appt and tell them that he has been out of control and might need to be hospitalized and that the canceling of the appt is putting her other children in jeopardy.  I would ask them what steps I should take to protect them and get him immediate intervention.  

 

BUT, it is not an easy step to take.  It is very, very difficult to have your child committed.  So for me to type this on my side of the screen with my child now 24 yrs old and no longer exhibiting those behaviors is from a position of feeling under control.  It is a far different experience when you feel like you are drowning and life can be handled only 1 minute at a time.

  • Like 2
Link to comment
Share on other sites

Please feel free to ignore this, but I truly care and mean no harm. 

 

I don't know if any of these ideas would work at your home...

*Sandbox:   After a friend's son (no special needs) threw sand in my son's eyes I decided to have a one person in the box rule for awhile.  We also tried goggles.  I just never wanted a repeat of trying to get sand out of my son's eyes without him rubbing/scratching his eyes!

 

*Roughhousing with daddy or even a giant stuffed animal?   I totally get that your younger boys are afraid.  But the fact that Peter is chasing to hug one of them makes me wonder if he would experience any lessening of his behaviors if he gets some of this highly physical stuff from play with his dad or even a stuffed animal that he can hug.   It doesn't sound like he's intentionally wanting to do harm, but because of his size and issues he's like the bull in a china shop.  From my teaching days, I know it's a big difference when you have a really big kid who's very placid and then the one who also has issues like ADHD.  It's so sad to think that Peter really wants to interact with his brothers, not hurt them intentionally, but he's a danger to them and to himself.   As for the baby,  I had to set up an enclosed area in our basement  for my daughter that I called Babyland so she wouldn't get trampled, etc.  when I took the kids downstairs,  and we had to have playpens on the other levels for her safety.   Sometimes I felt more like a jailer than a mom with all the safety devices, alarms, etc that we had to use.     

 

*As for the messy eating, I would honestly let that go right now when you're dealing with so much chaos.   I saw enough as a volunteer in the in-patient psych unit at the local children's hospital and then as a parent going to the autism family picnic to realize that some very messy eating is often part of the package, even with older kids.   (And having a big dog came in very handy when my kids were little.)   Have you ever tried having him sit at his own little table during meals where he can do his thing  and not be so disturbing to others at the main table when he's up and down as well as being messy?    

 

Obviously these are little ideas given what you're dealing with.     

  • Like 1
Link to comment
Share on other sites

Just some info from my state. There is a state agency called Performcare  that will send out a therapist to your home for an intake and they will help coordinate services. My understanding is that if a need is determined, they will help a child get it, regardless of insurance coverage. Families of kids with ASD use this approach. (It was specifically recommended at an ASD family support group conference.)

If there is an active crisis, a mobile intervention team can be called by anyone at anytime for a child's emotional or behavioral crisis. However, if there is violence in progress, they won't come out and you have to call the police.

I know of one family that had good success with mobile intervention. Another family had to call the police. Both kid ended up in the hospital immediately. After that, help was available for the kids. (Adding: The teen stayed in a specialized hospital for several days, followed by a day program for a few weeks. The younger child was evaluated in the hospital that day and went into a day program for a few weeks. He was started on meds right away and because he was in the day program, the effects of the meds could be closely watched.)

 

(One more thing. One family was a hsing family with younger kids so getting to appointments was a problem; they qualified for in-home therapy services because of this.)

Try to find out if something might be offered in your state like this.

 

ETA: Fixing typos after having done this on my phone.

Edited by Tiramisu
  • Like 2
Link to comment
Share on other sites

  • 2 months later...

Big hugs Wendy. A good cry is def warranted :)

 

I did what one-step suggested. I used to have a teen that my son loved come in 3 days a week and play with him. Do blocks , dig holes, w/e he wanted. It gave my younger guy and the rest of the kids in the house a break. It was much helpful. He knew her and was comfortable with her.

It has been invaluable to me. I still use her from time to time.

I agree with the independent play. Tho they can be resistant to it. Its good to learn.

Hang in there. I often think to myself....thank God! That Gods blessings are knew everyday :)

  • Like 2
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...