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Anyone with a child on the autism spectrum?

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Bluebird26 posted 10/26/2013 06:32 AM

My youngest son is 11 years old and ASD and has continually struggled with our divorce and changing routines and rules between the houses. He is a handful most of the time, he is IC and sees therapists regularly.

Now the ex has never handled him very well, has very little understanding of his condition and I am pretty certain winds him up so he wants to go home early. This has been increasing regularly. I get a phone call DS is highly distressed and wants to come home. I speak to him try and calm him down but he is still insistent on coming home. So for the sake of peace and to stop the added stress on DS.

The ex only has him every other weekend. So only 4 days a month. I really need this break. I am exhausted.

The ex has now decided if he doesn't want to come he's not going to make him. Now DS knows this he won't want to go. I don't know what to do from here. I am fairly certain DS anxiety will ease if he doesn't go but the stress of looking after him full time will probably send me over the edge.

I already feel like I don't get to have any sort of life, as I have my kids majority of the time. I am really struggling with this. Between what is best for my kids but saving my own sanity too. I feel like a bad parent.

whyohwhyohwhy posted 10/26/2013 07:23 AM

My kids don't have autism, but I work with kids on the spectrum, and I understand how exhausting it can be.

You definitely need some down time, whether it's just to sit around and watch tv, or to get an oil change or a haircut.

When my daughter had some severe medical problems, I was initially very reluctant to send the kids to their father for the weekend. But it was totally wearing me out, and making me ineffective as a parent.

Eventually, when it became apparent that her issues might become permanent, I figured he was going to have to learn to deal with it sooner or later, and he might as well start now. I made sure he had the contact numbers for all of her doctors, and had my cell on and with me at all times when he had the kids.

At the same time though, you can't force someone to take the kids if they don't want to.

My only suggestion is to see if on those days when he's supposed to have your son and won't take him, is there any way you could get him to pay for a sitter? just so you can get out at least for a few hours?

I know it's very difficult to find sitters for some kids, but you may be able to ask his teachers/aides if there is someone who knows him and might be interested in sitting for him on the weekend for a few hours. This might help with transitions, behavior, etc.

twinkie posted 10/26/2013 09:08 AM

Bluebird, my heart broke for your son as a I read your post. I have a son on the spectrum but he is 22 years old. All you can do is continue your son's routine and schedule and by all means keep him in IC!!! I raised my son pretty much on my on so I can really relate to needing time to yourself. It is exhausting.

First, does your son receive services through the state mental health association? If so look into respite care for him so that you can get that much needed adult time.

Second, find an Autism support group in your area! These groups can be a lifeline when you feel you are drowning. Their may also be other parents in the group that you could trade babysitting with so that each of you have the needed adult time.

Third, as difficult as it is always try to reinforce that the father loves him. It is heart breaking that a father would do something like this but it happens all to often.

Lastly lots of love and prayers for you and your son. I know all to well the road that you are traveling and it is a bumpy, long ride but I am telling you it is worth it!! My son graduated from high school and attended one of the top engineering schools in the United States. He is functioning in society because of the things that I did for him and he knows it. I never had to tell him it was me doing things for him he just knew.

nowiknow23 posted 10/26/2013 09:10 AM

Hi, bluebird. My DD15 is on the spectrum. I have had the exact same struggle with her not wanting to go with her Dad, and him not pushing her, which lead to shorter and less frequent visits. For the first year of visitation, she didn't spent a single night with Dad.

It got to the point where she wouldn't see her father unless he came to my house. It was completely untenable.

DD is in a residential treatment program now, getting intensive therapy. One of her treatment goals is to encourage and support her spending the visitation time with her father at his place.

It seems like there are two issues here - the visitations with Dad and your respite.

Have you talked with your DS' therapists and doctors about how to handle the resistance, the panicky calls, and the desire to return home? They know your son and may be able to offer some strategies that can help. If your ex is involved in those therapies at all, they may be able to give him some direction as well. Of course, if he's not vested in supporting DS and encouraging visitations, anything you try to do will be undermined and ineffective.

That's where respite care comes in. You need it. You absolutely positively have to have it. Talk to the team about resources for respite. There are likely community resources available to give you the break you need while ensuring your son has appropriate care. In my state, there is a children's mental health waiver program that provides resources, in-home supports, and - crucially - qualified respite care. I believe there are similar programs in every state. It's worth looking into - search on "mental health waiver." The services are provided at no cost, but there's typically a waiting list, so get it set up as quickly as possible.

((((bluebird and son))))

newlysingle posted 10/26/2013 10:18 AM

I don't have a child on the spectrum, but I agree that you need respite care. If you have to pay for it, I think your X should do so.

dmari posted 10/26/2013 12:35 PM

#1 You are NOT a bad parent. If you don't take care of you, who is going to take care of DS?

My DD18 is on the spectrum and has multiple mental health issues. I think you should bring this up in therapy. As you know, transitions are so difficult for our kids and your ex needs to grow a pair and grow up because what he is doing to your DS is NOT OK. Your ex may need to see DS's therapist to learn how to make the transition smoother but to also make his visits enjoyable. This would be for the sake of DS.

I am not an expert of taking care of my own needs but I am trying. Last week, I had my first massage ever. For an hour, someone took care of me. It was blissful. I decided I need to do this for me every other week.

I am also trying to carve out time to do projects around the home for "x" amount of hours. You know, something productive.

Make taking care of you a priority. Looking back, I am so thankful I got that massage because the days following that massage were extremely difficult but at least I had that hour.

Bluebird26 posted 10/26/2013 19:37 PM

Thank you everyone.

The ex is a piece of work. We have been seeing specialists since DS was 2 years old. I could count on one hand how may sessions the ex has attended. Even when he was out of work frequently I still had to take time off work to get our son to his therapists.

Our psychologist also used to treat my exwh so he knows what sort of man he is. The psychologist & paediatrician actually support me having full custody of my son and would testify in court on my behalf, but I can't do the drawn out legal pursuit of this financially as the ex would fight it even though he doesn't want DS. Just because he can.

Since our separation/divorce he hasn't turned up to anything. In our agreement he is supposed to pay 1/2 of our out of pocket medical for our children. He tends to hold this money ransom and claims 'he can't afford it' he currently owes me over $600 dating back to April of this year. Unfortunately our agreement doesn't specify a time frame for the money to be paid (as soon as possible) so there isn't much I can do legally as he's not refusing to pay it, just late.

I have contacted the local Autism services to see what support is around or holiday programs etc but they are very far away and costly. There is very little help financially here for children above the age of 7 with Autism.

Thanks for letting me vent.

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