The Most Stressful Thing Is...

I think I possibly represent the outcome all parents fear the most. My PDD-NOS son (14) is currently living away from home in a treatment facility.
This was the outcome from which I was going to "save" my son. Being a single mom who had been raising 2 daughters alone when my son came along at 3 as a foster child, I "knew" all the answers. I had been an early interventionist (SLP) for over 10 years then & worked with all manner of disabilities with the birth - 3 population in the children's homes. Outcome: 11 years later I am disabled due to physical & mental exhaustion &, in spite of seeing that my son got every bit of help available, his behavior became gradually more & more difficult until one night he viciously attacked me, had to spend a week in a children's psych hospital & then was transferred to the treatment facility. He's been there since Feb of this year. He may be 14 & a teenager but he is still my baby & my heart is broken. I failed.

kcovert, I am so dreadfully sorry to hear about all that has happened to you and your children. I hope you do know the fact that your son had to go to a treatment facility is not your fault. Clearly, he has major issues and you tried everything in your power to help him.

There are some children with ASD who do end up spending time in a psychiatric hospital or in a longer term treatment facility, and that often occurs when outbursts are just too dangerous for a family to handle. There comes a time when everything is going in a downward spiral, with so much stress, that the family just can't cope anymore. This is a situation that occurs in other circumstances, too, where caregiving become a nightmare and help is needed no matter how much the person with ASD (or Alzheimer's or whatever the condition) is loved. Indeed, sometimes it is more loving to get that professional help and long term intervention than to let the downward spiral continue. If keeping someone home means the caregiver is falling apart, other family members are suffering, and the likelihood of something awful happening (because of a child's outburst, or a stressed family member's response) is growing... there comes a time you just can't go on like that, and having a trained staff at a facility care for your loved one makes good sense. Truly, how does the person with the issue benefit if the physical and emotional health of each family member, and the family as a whole, is disintegrating?

It is important that we find ways to accommodate people with ASDs in psychiatric hospitals and long term treatment facilities because some of them will spend time in these. At the recent International Meeting for Autism Research (IMFAR), for example, I spoke with researchers at the University of Colorado who had realized typical practices in the psychiatric hospital were not working for children with ASD. They developed a program and approach specifically for children and teens with ASD who spent time in this inpatient, psychiatric setting, with great success. (There were far shorter stays, and fewer readmissions.) It's so important that this kind of work gets done so that people with ASD receive meaningful intervention if they find themselves in this circumstance.

As for caregivers in your situation, I would often suggest they seek out support in the form of individual or family therapy. This was a long term, exhausting, and debilitating situation, and I'm sure you and your daughters might benefit from a way to make sense of all that has happened. To locate a family therapist: http://www.therapistlocator.net/

I hope your son has a good experience in the new facility and that you and your daughters begin to recover and feel like yourselves again before you have to make any decisions about the future.

Oh, Connie, thank you so much for your kind & very helpful response. I know I will re-read it whenever I'm feeling sad & guilty & missing my son so much. Last night was especially bad & today I found your reply.

Are there other mothers going through this who may want to share their journey with me?

And thank you for the referral also. I joined a grief support group at my church & that has been helpful but, yes, I need more support.

I'm so glad I could be of help, kcovert, and I hope you can find some other moms who have been through this to speak with. You may have to dig a little, as often the people going through the worst experiences tend to self-isolate and maybe not speak up even if they go to a support group. Still, if you try online groups (Cafe Mom has an ASD group, and I know there are also Yahoo groups focused on ASD) or if you try local support groups, you can put it out there. Sometimes, if one person just tells their story, then the others who have been through something similar will be able to jump in, too.

For local support groups, you might check with your local chapter of the Autism Society of America: http://www.autism-society.org/

(Enter your state under "Resources Near You.")

Another possibility is to contact the Autism Speaks' Autism Response Team: 888-288-4762 or familyservices@autismspeaks.org

Another thought: does the residential facility your son is at have any groups for parents?

I hope you are able to find all the help and support you need soon.

Things have always been difficult, but over the past two months it seems that I have not been able to bear them as well as in the past. I am a single mother and have two sons one (typically developed) will be 18 on 7/2 and the youngest (on the spectrum) is 6. My 6 year old can be the sweetest child ever and at the same time can be unbearable with outbursts and tantrums. Medications have helped a great deal but he still has major outbursts and tantrums. I used to be able to handle it so much better than I have been lately. My oldest son is always caught between my dealing with the youngest and backlash from me because he isn't doing what he should be or is involved in what ever situation I am trying to diffuse. I too feel like I have failed both my boys and myself. I don't have a life and haven't worked since May of 2008. There has been so much loss (job, car, family time, and time for me). When it is suggested that I attend support groups with other parents dealing with autism, it isn't so easy because transportation is difficult. I do attend a women's PTSD group on Mondays at the VA(I am a 16 year Army Vet) but will miss that due to transportation issues or conflicting appointments for my youngest. It is so overwhelming and the only support I get from people is telling me I have a tremendous amount of patiences and am doing a good job. Trying to get respite care has been tedious to say the lease. DDA states there isn't an urgent need and so we are prioritized as having future needs. It helps to know that I am not the only person feeling this way.

Hi MarleneH, and welcome to IAN.

I'm so sorry to hear how stressful and overwhelming everything has been, and continues to be. I think many parents who have walked what can be a long, hard road will understand your sense of exhaustion. It makes it even harder when resources are limited, and just getting places is a struggle. Going through other major transitions at the same time you are coping with your younger son --like your older son being on the brink of adulthood-- just adds to the load.

I hope you will resist the tendency to think of yourself as a failure when you can't manage every aspect of life perfectly, all the time. The load is staggering, and it takes its toll. There is a different kind of courage and endurance needed to just keep going in these situations, and nobody makes it through without snapping at people, not being able to be in perfect balance when every difficult situation comes up, saying things they regret, etc. I have a child on the spectrum myself, and I truly do understand.

Maybe online support of some kind would be helpful, especially because transportation is a problem. There are groups on Cafe Mom and Yahoo for parents of children with ASD, for example. In any case, I hope you are able to cut yourself some slack as you make it through this difficult phase, and that things improve as your older son transitions to the next phase of his life and your younger son continues to grow and mature. Often, children with ASD who have outbursts do finally "peak" and begin to have less as they begin to benefit from therapies (such as meds, behavioral interventions, frustration management) and as they mature. I know several teens with ASD, for example, who had constant outbursts in elementary school or even early middle school, but have few or none now.

If you do find you need any kind of local resource, from support groups to therapy providers, you may want to contact the Autism Speaks' Autism Response Team: 888-288-4762 or familyservices@autismspeaks.org