I think I may win title for worst mom in America

[pudge the fish]

((Hugs))
You are not a bad mom

Although my DD is a NT, she was having massive meltdowns and many emotional issues.
Some Dr's were saying she was spoiled but there was something NOT right and I fussed at Dr's until we got the right tests done.
She was having massive swings in her sugar levels.
from like normal at 70 to up to 300 and then down to 140 all in a period of an hour. she doesn't have diabetes, but has she an endo issue that causes the swings.
once we really kept her level the meltdowns stopped.

she also hit puberty early at 11 but we had a wrist xray and her puberty age is 13 almost 14 and the Endo said that was a lot of the problems.

there are some food allergies there too and again under control it was like a totally new child. we were first told no allergies but after I INSISTED on tests & we did find she did have actual allergies.

she has a bit of OCD but I think that comes from me

praying too for you & family

 

[DisDreaminMom]

I just stumbled on this thread, but now I have to say something.

Ireland Nichole, you are not a bad mother. Your DH is not a bad man. The statistic for divorce of ASD parents is somewhere in the 50% range.

It also is not a failing to have your DD hospitalized. As soon as the threat of violence is made, especially murder, coupled with a history of violence, means that she should be sent in for a psych eval. It may seem like a terrible thing to do to your DD, but someone beside you needs to experience her behavior. A woman I know sent her 10 year old son in to the hospital for a few weeks and he showed the staff just what the mother was scared of. He threatened to kill himself and the staff.

Long story short, the mother realized that there were problems with her son that had nothing to do with her as a person or a parent. Also, her very detached husband realized he needed to step up to the plate and help out more. And the family is doing much better, because now the boy knows that threatening to kill people might be a way to vent frustration, but it also means you have to leave home and school and talk to doctors all day. So now he has limits and also knows that if things get help if he needs it.

And here is a big because I know how hard it was for my friend to deal with that and I hate that you are in the same boat. But don't keep hitting your head against the wall and blaming yourself. And the doctor who told you such a vile thing years ago should be taken out and shot.

 

[cquick]

I have a 32 year old son who has cerebral palsy, seizures, low vision and low IQ. We have had a lot of struggles.

But, our case is ENTIRELY different from yours. I probably see the situation from the other side.

I feel that if you don't feel safe, and your husband can't deal with it either, you still have the choice of a group home or a residential school that deals especially with violent autism. I know your first choice would be to keep her in the home, but it could be better for her to be in residential care.

Good luck to you and your family!

 

[ireland_nicole]

Thanks again for your input and support, y'all. One of the complexities are that when DD isn't raging, she says that she doesn't want to hurt mommy; plus she doesn't learn from consequences, so I'm keeping things locked up to be on the safe side, but hoping we are able to find a way to manage her rages.

Went to the endocrinologist yesterday who felt it was time to mention long term care issues; I smiled and nodded, and then went home and cried buckets, because no, we haven't made long term care plans, because nobody can tell us exactly what we're dealing with. The individual pieces of her dx's are such that she should be able to be reasonably independent. However, the total (and the unaddressed parts) apparently possibly equals a future much dimmer than that. Just what DH and I need to hear at this moment. She and the geneticist both agree that she has some undiagnosable condition, probably genetic, that as far as we know is completely unique to her. Great.

Meanwhile, none of the three counselors recommended to me are taking new clients; and DH still isn't talking to anyone. So I appreciate your continued prayers and support a great amount.

 

[cm8]

, may you find peace and help for your daughter, your son, your husband, yourself and your home.. I'll be praying for you. Sometimes you may have to let go........to let God

 

[Kat77]

Ireland_Nicole,
You have been in my prayers this week as well. Words failed me everytime I attempted to post here... so !!!

 

[dclfun]

Hugs to you! Of course you're not a bad Mom. If I were you, I'd call your governor. Let him/her know that you are on a waiting list for Medicaid Waiver and that your family is now in an emergency situation where w/o services you might have to institutionalize your child. That's part of what the funds are for- not just treatment but to allow a child to live at home with their family. In the eyes of the state, this is a much less costly option which is also part of why it's provided. I know of instances where someone has been pushed to the front of the line due to such a situation, and I'm sure her physicians would vouch for you here. Believe it or not, your governor CAN intervene. That said, sometimes placing a child in a residential facility is a good thing and it doesn't have to be forever. You aren't giving up on your daughter, your family, or yourself, but instead are trying to give her the best life and interventions possible. My daughter worked at a residential facility for children with autism ( an ABA school). Instead of two parents trying to deal with their child's needs while trying to work and raise other children, there were multiple highly trained therapists focusing on each child. Most of the children there received state funding- this was in Boston, Mass. These kids had lots of love and nearly constant 1:1 attention and therapy. I'm hoping you can somehow get the support you need too. Obviously you are a really strong woman to have gone through so much and still been able to nurture your family- it's just that you need nurturing too.---Kathy

 

[momejay]

I think I have got you beat in the worst mom catagory. I am a single mom of 2 teens with autism. My son has been kicked out of every school in our area at least once. He now travels an hour one way to school each day. We tried genetic testing, drugs, diets, therapies, you name it, we have done it at least once.
I used to have to wrestle him to prevent him from attacking his sister as she screamed, "no I won't go to my room for my safety." I got kicked, punched, hair pulled, bite marks... I have been reported to Child Protection agencies for fear of my daughter's safety & my son's. Of course when they show up & see me with bite marks & a black eye, my daughter's scratch or school nurse reported hair pulling doesn't seem like much.
Having a good team for support is important. The problem comes when every year the school system tries to take away services or because he is age whatever he suddenly has grown out of the need? I have even been told that he isn't on the right meds by teachers. This year they say he has no behavior problems at school. Then they report, he has behaviors they are working on...hair pulling, snapping bra straps, shoving smaller kids, knocking over book shelves, biting his hands, getting nose to nose with female educators & yelling...
I suggest looking at your child's tummy/digestion. My son was obcessed with food. He ate until he threw up & would still continue to eat. They put him on gluten free diet & celiac meds & he has been manageable since. I know the diets are hard to follow, but since we put my son on what I call the "cave man diet" he has done much better. He eats meat, veggies & fruit, & nothing else. (called cave man because if a cave man couldn't pick it & eat it or kill it then he pretty much can't have it) He still eats too much, but he is also 6 foot tall & over 200 lbs. He is still non-verbal & is at a Kindergarten level in school. We have discussed residential care before with my son, but they can't stick to his diet.
We also found out that drugs such as those for ADD, or ADHD were no good for him & had an opposite effect. Benedryl, for instance makes him crazy. He gets a "fight or flight" type response & has super human strength instead of calming him. I use meletonin & tons of excercise or we'd never get him to sleep.
I can't tell you what is best for keeping your relationship together. My X left when they were little & my boyfriend doesn't include my children in anything. I found that putting the kids to sleep & getting out with humans my age did me a lot of good. I come home before they wake up & sleep when they are in school. (I live with my parents which creates another set of problems.) Try a midnight movie/date night/24 hour grocery store?
It is an uphill battle that only gets tougher to climb. Wait until they tell you she has the right to refuse her meds. (fighting that battle with my daughter now) Best of luck to you!

 

[NotUrsula]

I suggest calling all of those therapists who are not taking new clients and telling them that your situation involves some serious threats of violence. Ask them to refer you to someone who IS taking clients right now, and who might be willing to get you in quickly -- sometimes the therapist will make an exception if he/she realizes that emergency care is needed, or will make a few calls to help you.

 

[ireland_nicole]

quick update: tweaked DD's meds; no more threats from her since the initial post. still lots of behavior/anger issues but not to the same degree.

situation w/ DH is still the same.

I got one more recommendation for a therapist, but she goes to our church (which is funny, we've only got 300 members) and that would be awkward since I'm in ministry leadership.

I did (and yes, I realize what I said was inappropriate) mention to the person who put my name on the "waiting list" that I sincerely hoped I still had a marriage to save by the time we got a call back. probably should have held my tongue. still, they had no one to recommend either.

maybe that's part of the "purpose" in all of this, to in the end, counsel other families like ours- because apparently, resources are sorely lacking.

 

[melisandes]

Like all the others said, You are not a bad mommy. All special needs moms have moments like this. The fear of what will happen next hurts so bad.

Look at her meds. Some meds start to malfunction during puberty. Amphetamine type drugs for example can cause a child who is not really add to become violent during puberty. I know because I was a misdiagnoses child who had a bad reaction during puberty. Docs love to add the ADD diagnosis in with autism but Autism has its own hyperness seperate from ADD.

 

[kampfirekim]

Ireland Nicole, You were heavy on my heart today. I prayed specifically for you and your family. You are not a bad mother. Any mom or dad with a special needs child feels like a failure sometimes. I certainly have had my share of those feelings as well. I can't think of a greater strain on a family than dealing with a child on the spectrum. You will remain in my prayers.