Feel like giving up (ASD related)

[earthmama4]

Mamas, I need a safe place to vent. Please no flames.

I have three kids on the spectrum. XH was on the spectrum in hindsight. Didn't know it at the time. His moodiness, rigidity, and lack of proper empathy led to abusive behavior. I divorced him after 10 years after fighting desperately to save our marriage. I now have a diagnosis of Anxiety and PTSD. I did abuse recovery therapy and personal therapy but since my own children exhibit the same behaviors I am constantly "triggered" by their own ASD outbursts, especially as they reach the teen years and look and sound more like men. As one of my therapists said, "What you need to heal is time away from all those triggers, and you can't get away from it." No sh*t sherlock.

A little less than a year ago, my oldest, who was then 16, entered voluntary placement in state foster care so that he could enter a therapeutic foster home. This was based on years of violent outbursts that could not be controlled with any measure we tried at home, and we tried EVERYTHING. Inpatient treatment, day treatment, outpatient therapy, family therapy, in-home therapy, a special school, diet, and several different meds (starting at 4 yrs old) He has a complex diagnosis of Aspergers, ADHD, Mood Disorder NOS, and anxiety/depression. He is doing fairly well in foster care mainly due, I think, to having most of his home stresses removed (no other kids in the home, older couple who can focus 100% on him) and having lots of attention through specialized staff. We don't expect him to return home and are working toward independent living between 18-21. It was the hardest decision I have ever had to make but I am at a place of peace about it now. I really had no other choice.

My 11 year old (the one I have a thread on here or maybe in Allergies) also has a dx of PDD-NOS, severe anxiety, and severe sensory issues. He is much like DS1 except that he doesn't lash out quite so much at others, more inwardly. Still, he does trantrum, yell, scream and throw things. He doesn't hit me (unlike DS1) but it still triggers me horribly to have that kind of emotional chaos around me all the time.

I feel like I am just going through the motions again, just like with my marriage, just like with DS1...I am doing everything I can possibly do to help him, but in the end it wont matter. He's a little stick of a guy right now but in a few years those tantrums are going to get scary and dangerous. We warned DS1 of that too but it didn't matter. That was what really made living with him impossible. By 16 he was over 6 ft and 250lbs. DH at 6'3" and 230 couldn't budge him. When he came at me that last time and threw a chair just feet from where our baby was sitting, I knew we'd reached our limit.

I haven't done as much with DS3, we've tried a few meds (which either didn't work or he had horrible reactions to), we've done some therapy (he hates it) and I have just applied all I learned with DS1 through all the "specialists" and book recs, etc. Its hard to commit myself to jumping through all the same hoops, knowing it didn't help DS1 (or at least didn't help him enough) and it cost us everything (DS1's two inpatient stays were the primary factor in us losing our house in 2010). I could go on and on about other things we've done, and yes DS3 is on a GFCF diet right now and we are home/unschooling to eliminate the school pressure that was what we thought was the biggest trigger...but here I am, in tears again this morning because I have had to listen to my child have a gigantic fit for the past 2 hours because we don't have cereal.

And I just feel hopeless right now. Like I will never, ever, ever be able to escape these violent, irrational men. Wanting to love them, but having a hard time not feeling like they are ruining my life. I have a wonderful DH who has stood by me for 6 years raising this boys and we have 2 little NT boys together but our daily life is so stressful, no matter how hard we try. There are times I wonder if it would be better to have separate homes so YDS1 and YDS2 can have some semblance of normalcy, but that is not fair to us! Our babies deserve BOTH their parents! I have so many other stresses that I need to save energy for - my allergies are out of control, I have had a bad cough for weeks and now baby has an awful gagging cough and I am worried we might have pertussis. Cereal?!? Seriously GET OVER IT!

I feel like I just need to totally disconnect from him and just not care so that I can survive my life. Drag his kicking screaming butt to school so I can get a break. Being a passionate, committed, loving and thoughtful parent are my values, but its killing me to care anymore because no matter how many time we think we've finally reached that place of understanding, we get plowed over once again with the entrenched behaviors that just wont go away no matter what we do.

[crazytownmama]

oh hugs!!! i have no advice, but im sending good thoughts your way...   hugs!!!!!!!!
 

[IncompetentHousewife]

I'm so sorry you're going through all this. A 2-hour fit about cereal? I totally get it. I have two boys on the spectrum. They're only 2 and 4 now and I know I haven't experienced nearly what you have, but I can see myself in your same shoes someday. A couple years ago, I could have never imagined any of the things you described. Heck, I probably would have thought bad parenting brings these things on. ASDs change everything though. You've been through a lot and you're stressed (not to state the obvious as the therapist did!).

I wish I knew what to say. I would imagine you already have mental health help in the family since you mentioned placements and therapy. So I'll just say that I'm sorry, and I hope you are able to find help. Even a little tiny bit of help. Somewhere. Maybe you can focus on having a better tomorrow. Then a better next week. Looking too far in the future might seem to depressing right now. But if you are able to get a smidge of help to make one day better, maybe eventually the future can be better, too.

The only practical question I have is about the meds for DS3. You said you've tried a few that didn't work or caused reactions. Is this something to pursue some more? I would imagine most people on this forum limit meds as much as possible, but you are certainly in a situation that justifies them. My 2-year-old has PDD-NOS and Fetal Alcohol Syndrome (I adopted him, which I feel oddly compelled to mention everytime I mention FAS!) and he more angry and violent than I ever knew a little person could be. Meds have made all the difference. I don't know what the future will hold, but getting his meds right has taken me from a mother who was sick all last winter to a better mother who has some hope.

Hugs to you.

[DanishMom]

Oh mama, I'm so sorry. You have far far too much on your plate. Constant stress makes it impossible to fully heal from the PTSD. Something needs to change. I don't know how or what. I understand the triggers too and it is a lot different with older and stronger kids. I wish you peace and healing. Hugs

[pattimomma]

Earthmama4 You are not alone in this experience!

In hindsight I too realize that my ex DH has very similar (if not the same) dx as my son. I find myself saying, "I left his dad to escape this kind of abusive behavior but I am stuck with this kid". Luckily some things we (current DH and myself) have been doing seem to make DS not as out of control as ex DH was/is. DS is 12 and he is taller than me and outweighs me. I have on occasion thought about out of the home placement for DS. I have 5 children. So I totally understand how it feels unfair for them to have to be exposed to the older child's tantrums. We seem to be on a better track now and DH quit his job so that he can take DS to multiple therapies a day. It sounds like you made a good but painful choice for your 16 year old. Have you applied for Katie Beckett Medicaid for your other two spectrum kids that are still in your home? That could help with the medical expenses. Can you find a specialized school in your area that could handle DS3? It sounds like you need respite asap.

I am going to list my son's dx so that you know you aren't the only one with a super complex kid:

LD- reading and writing (dyslexic)

ADHD

PDD NOS

Adjustment disorder with mood and behavioral disturbances

Anxiety disorder

Central auditory processing disorder

Expressive / receptive language disorder

SPD

So Earthmama4 - I hear you! It is hard!

[earthmama4]

Thanks so much mamas! Sorry, I haven't been able to log on for two days since I posted...my computer was being glitchy! I so appreciate the words of support. 

Regarding meds, well my running "joke" with DH is that one of us needs to be on meds, either DS or me. More true than funny. With DS we've tried the SSRI's which reduced his compulsive thoughts and phobias (he was terrified of vampires and ghosts and had violent images come to mind without warning), but it did nothing to reduce his social phobias or irritability and moodiness. We tried some acute anti-anxiety meds but it made him completely out of it, even at the lowest dose. I'd rather take the tantrums than a half-alive zombie child. And we tried ADHD meds, since we had success for a time in that leveling out DS1's behavior. We endured one dose. He was running around looking for a place to hide, like a chased wild animal, face red, heavy breathing, and nearly screaming when I tried to touch him. I was like giving a scared squirrel an expresso. Again, more true than funny. (DS1's doctor once said that mom's with ASD kids get a really weird warped sense of humor over time and I think she's right! You have to, to survive!)

As far as a special school, we had him in one and one of my worst regrets was changing that!  They were all - DS1, DS2, and DS3 - in a public charter for kids with high functioning autism. Yet after 2 years DS3 still struggled with school anxiety. He missed 22 days of school in 5th grade and every single one was anxiety-related. He pleaded with me to homeschool him. I had a theory that taking the kids to the country would help them, just getting them away from the pressure of modern life. So we moved in September out of state from my family, up to where DH grew up. We were going to homestead and live a simple life. We had an opp to take over the family farm. Well long story short - it didn't work out. The property was so far gone as to be nearly unlivable. The kids were miserable and so was I! DH's job kept him gone long hours and we were so isolated out there. Great idea in theory, but in reality it bombed. 

Right before the holidays we moved into a townhouse in the nearest city. We tried to get DS3 into a very small charter school but he only attended 3 days and then came down ill and refused to return the next week. We are considering returning to our other state if they can get back into the autism charter school. It wasn't perfect, it wasn't a cure-all, but it was probably the best we could ever find and a supportive community. I remember one time when I tried to get DS to school and he bolted and me and the behaviorist just took a walkie (to keep in contact with the office) and started following him like it was the most natural thing in the world. NO ONE looks at you weird in that school if you come in with your hair all disheveled and a kicking crying kid on your heels. They can send them right into the OT room to chill for a while. Thinking back to that now, we had no idea how good we had it. I have them re-entered for next years enrollment lottery, to be held on Feb 22. After that, we'll see...

Not sure I want to totally give up on unschooling tho. I have seen improvements in DS3's attitude once I let go of the idea of teaching him and just let him be. He's really enjoying some of it, yet on the other hand, he misses our old state, our extended family and even school. He had lots of friends there. He complains of loneliness a lot here. DS2 is a teenager and doesn't like to "play" and YDS is only 4 and mostly just annoys him, LOL. When we talk about his old school now, he remembers it fondly and wishes he could go back. Sometimes I think going back is good idea. DH is more skeptical. Sigh. FWIW we are struggling financially here and I have more opportunities for work in our old state, and child care is cheaper. If it turns out that I must go back to work, we'd have to go back. Maybe I should just let this simple life dream die and grab reality by the horns, I just don't know. We've learned that no matter what, things are going to be hard. Torturously hard. Its more a matter or which is less torturously hard. The subtle nuances of which form of hard is less tortuous. My gosh, I have become so cynical. Can you believe I was once an optimist? XH tried hard to get that out of me, but he wasn't quite successful, but raising these kids to adulthood just might do it!