I think I may win title for worst mom in America

[ireland_nicole]

I can't believe I'm actually posting this, but I feel like I'm going to explode, so if possible, I really appreciate your patience.

We're in a really, really tough place right now. My wedding anniversary is today, and my DH is away on a cub scout camping trip w/ DS. He apparently isn't sure that he can do "this" anymore, and is considering leaving. Our life is often dominated by DD's outbursts and explosive rage. I had to go back to work 4 months ago because we are in so much debt from trying to get treatment for our kids.

And I really, really hate to admit this, and know that I'm the worst mom in the world, but right now I really, really wish I could have a do-over- and not have DD. I'm physically smarting from the kicks, bites, scratches and punches I got trying to get her out of Barnes and Noble. I'm emotionally exhausted from the awful hate that spews out of her mouth, and the constand living on eggshells; and I'm actually afraid of her; I keep the knives locked up because she has very calmly told me on several occasions that she's going to kill me with them while I'm sleeping.

We've seen every kind of specialist, done every behavioral intervention that's been recommended, every diet, every therapy, every med.Our life is so far from what I envisioned and hoped and dreamed for- it's a nightmare. And I'm so, so, so tired. I hate what our family dynamic is doing to DS, and I feel like a total failure. And at the end of the day I guess I am- I mean what kind of mom feels that way?

Most days I'm able to say, I love DD; I hate autism, and all her other disabilities that have affected her mind to the point that I can't seem to "connect" and reach her.

But today, I'm just to tired; and I don't know how to do this anymore.

 

[Nancy for Disney]

I wish there was more I could do. You say you have tried everything so I won't offer any other suggestions.

 

[iwrbnd]

I'm so sorry but you're not alone and you're not a bad mom! You've been handed a really hard hand. Anybody would feel the same way. I have 2 on the spectrum and hvae had the same thoughts. I remember coming home from work and thinking that I wanted to just keep driving and never look back!

I'm so sorry. Can you and your husband take a weekend off together? You need each other and autism is very hard on a marriage. There is respite care that should be able to watch your daughter.

Hang in there. It can get better. Last year was so bad I had no hope and couldn't see the end of the dark tunnel. But, this year is so much better! You never know what kind of developmental milestones your kids will reach. Maybe next year will be better. Hold onto hope because it is there. Autism has no stop sign like some other disorders. You never know how far they will progress!

Don't feel bad for your thoughts. That's normal. I work with families that have struggling children and most of them have confided the same feelings. You're a good mom that has a lot to burden right now!

Have you seen a therapist? I know money is tight so maybe your pastor or priest? Our church has a free support group, maybe there's one in your area, too. Do you have a good friend to talk to? I'm sure many disers will have some ideas, too. Again, I'm so sorry! Parenting is so hard and parenting children with autism is so much harder!

 

[ireland_nicole]

I am open to suggestions, I think. We've just tried everything we know of other than what seems unsafe or counter-intuitive to us; i.e., IV chelation, hyperbaric, etc. Not that they're wrong for others, I'm not making any judgement on that; just that they didn't seem through our research that they were going to be safe/effective for her.

Trust me, I know I don't know everything, so I'm open to learning about something new.

Thanks for the support; I just don't know which way to turn right now. DH has refused to go to counseling with me, but I can only control my decisions, not his, and I have asked my church for recommendations of a good therapist (I'll have to figure out how to afford it later- probably won't be able to pay down everything quite as quickly, but I think this falls under necessary expense) I'm a little nervous though, as the last therapist I saw for me (after DS was born) told me my daughter's characteristics were because I was too cold and my expectations were too high. I know that's not true, but it took me a lot of time and tears to really believe that.

 

[kirstenb1]

I'm so sorry. I have definitely had those thoughts, so you're not alone. If it's okay, I'll keep you in my daily prayers.

 

[happily single]

As difficult as it may sound, have you considered hospitalization for your dd? I've had to hospitalize my son numerous times. The hospital, which I respect and love, is really pushing for residential treatment as well. But I feel that he is just too young and I'm not ready for that.

Also in RI we have a bunch of services, including HBTS (Home Based Theraputic Services). In RI I can go to the Department of Human Services website and they have a section for kids with special needs. You might want to try that. Some programs are paid for by my private health insurance and others (HBTS) are funded entirely by medicare.

Good luck!

PS Your not a bad mom and you know it. Having a child on the spectrum is possibly the worst thing in the world. In my opinion strangers never understand my son's behavoirs, strange sayings and such, because "he looks normal"

 

[gritzel4]

It is so important for you to take care of you. Try to make time with your DH and DS without your DD. Look into respite services. Is there an Autism Support group in your area? Last year I attended a parent workshop titled "De-esculating Escalating Behavior" and it has changed how I deal with my son when he rages. I will be praying for you and your family.

 

[Janet Hill]

He apparently isn't sure that he can do "this" anymore, and is considering leaving. QUOTE]

I'm not sure how this would help anyone but him.

You mentioned church... Is there someone there who could talk to him and encourage him that this needs to be dealt with as a family.

 

[hedgehog2owl]

It is so important for you to take care of you. Try to make time with your DH and DS without your DD. Look into respite services. Is there an Autism Support group in your area? Last year I attended a parent workshop titled "De-esculating Escalating Behavior" and it has changed how I deal with my son when he rages. I will be praying for you and your family.

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Does your family/dd have an advocate? If not you should ask about getting one, they will be able to point you to support groups and respite services.

 

[ireland_nicole]

Hi y'all, thanks so much for your responses.

So far, we haven't qualified for anything here. Our insurance doesn't cover any therapies for developmental disabilities after the day a child turns 5, and we're on the medicaid waiver list, but the wait is currently about 9 years. We pay OOP for a behavioral therapist and a psychiatrist for her. Due to her faring worse and worse at school we finally hired an advocate a few months ago. We're mired in a long tangled process w/ both kids at this point as far as school. At least DS is doing well, but because of that they're trying to eval to dismiss him. DD isn't doing well, but the school keeps saying her issues aren't severe enough to merit AU specific services. It just seems like a very expensive whirlpool we go round and round in.

To be honest, I'm part of the reasonably (about an hour away)close autism society, but haven't gone to any meeting yet because (and I'm being honest even though I'll sound bad) we went through a long process w/ DD and have gained and lost and changed DX's so much, we don't feel like we "fit" anywhere. She has PDD-NOS, so the mild side of that spectrum, but it's complicated by the seizure disorder, very severe ADHD, immune deficiency, and other "stuff- mild dismorphias, anomalies, asthma etc.". The geneticist cried and said there must be something, but it's unique to her. There's no one quite like her. We've been through RAD, ODD, Bipolar, SID, SPD, etc. dx's on the way to this point as well.

I think I just need to allow myself to be in a group of parents of kids on the spectrum and accept that even though DD is considered high functioning, it's still ok to be there. And I probably need to open up to my worship pastor (we're both close to him and his wife) and allow them to try to help us. I don't like to dishonor DH by talking about him with others (umm, let's pretend this doesn't count for a minute, ok?) but I think maybe things are at the point where I need to be a bit more open with at least one pastor we hold ourselves accountable to.

For those who may have hospitalized kids, how old were they? I can't imagine leaving her somewhere; she's so young, and so small, and so vulnerable. I don't want anything to happen to hurt her. It's not even something we've opened ourselves up to considering until this point.

Sorry for the rambling, and I promise I'll get over my pity party soon; I just don't know how to keep going right now; it's just one of those periods where it is so unbelieveably hard. It means a lot to know some of you have been there, and that even now it can get better.

 

[kirstenb1]

Ireland Nicole, I have never posted this anywhere, but I'll sum up dh's family story. When he was 11 his parents adopted a 4 yr old girl. His sister turned their family upside down. She stole, ate from the trash, threatened the family as she grew older, just basically very anti-social behavior. It escalated when she was a teen. DH's parents had to turn parental rights over to the state to get her into a residential facility, called Devereaux (spelling?) in Pennsylvania. They were going broke trying to treat her. She was dx'd with schizophrenia, and as an adult, has done well, as long as she takes her meds.

I'm not suggesting any answers at all. I just know what dh's family went through, and my heart goes out to you. There is no easy answer. Are there any meds that modify her violent tendencies? Even at the risk of impairing her ability to learn....you guys deserve to feel safe in your own home, kwim?

 

[bookwormde]

You are certainly not a bad mom, you are just "burnt out". We have all been where you are now to some extent. If there is anything I can do to help please feel free to PM me.
As a practical direction, I would suggest stopping all non essential "doing" for a while and just "be" a family. I guess that sounds a little cryptic, but I hope you get idea.
Your DD is extremely frustrated and her actions and expressions are a reflection of that. Often the primary caregiver is the recipient of the majority of this since they are the one that the child feels safe enough to fully express themselves to, I know it is hard but you need to not listen to the words, but instead sense the source of the frustration and anger.
How is your DS doing, is his relationship with DD very difficult (in which case you need to provide as much support for him as possible) or is it functional, in which case you need to stand back and observe it, since often siblings provide a valuable model for parents to include in their "tool Kit".
As for your spouse, my suspicion is that what he is saying is just his way of expressing is frustration (you know us guys have a hard time being completely open and direct about our feelings). If by chance he is seriously considering abandoning his child then there is little that you can do to change this, and if you attempt to take all the "weight" to try to make him stay it will be very damaging to you and your children. What type of support network does he have. If it is limited I would be more than happy to communicate with him by email or even by phone.
1 last suggestion, stop all the "exotic treatments" 1 at a time. It is very likely that you will find that the benefits do not outweigh the costs (emotional, financial, and their "distraction" from more effective areas). Spend some of those resources and the rest of the family to get counseling and support., that will yield much more valuable benefits for your DD.
Ok that was not the last suggestion, I do not usually recommend this with a child of the age and cognative level but for your DD but I am strongly recommending that you become familiar with Stanly Greenspan's "Floor time" program and if there is a trainer in your area work with them, if not just self train the read of the family from the published works. Find a level (no mater haw basic) where you DD is comfortable and happy with interacting and let her build from there.

bookwormde

 

[Kay1]

My autistic son turned violent at puberty. The only thing that helps is Risperdal. Bless you and your family. You have nothing to feel guilty about. It sounds like you're doing the best you can.

 

[iwrbnd]

My sister's son sounds like your daughter. He has an autism diagnosis but doesn't completely fit it. The doctors just did another genetic test (all other ones were normal) because they can go deeper in the DNA strand now. He's now been diagnosed with Phelan-McDermid syndrome which means he has a deletion in chromosone 22Q13 (whatever that means). It's newly discovered and her doctor predicts many with an autism diagnosis will end up actually having this. Try googling it and see if your daughter might fit this. If this ends up being her diagnosis the insurance has to pay for it because it's medical and not developmental. Also, they are already in the testing phase of mice to try and fill in this deletion. I just thought it would be worth it for you to at least read on it.

My prayers are with you!

 

[happily single]

My son was 6 years old when he was first hospitalized. It was done out of total desperation. I cried for days and was totally unable to do anything but cry. The front desk at the hospital must have thought I needed to be hospitalized. But he was in a specialzied psyctric (spelling?) hospital-Bradley Hospital, in RI. Luckily he stay was short (about a week). He has been hospitalized many times since then. All of those have been longer, but it not only gives me and the kids a break from having to deal daily, but it also always the doctors to get a really good view of my son and his behavoirs. Also, since he's bad serious bad reactions to med's I feel much safer having them introduce med's at the hospital.

You mentioned there is a 9 year wait for the medicaid waiver. I"m not too familiar with that because my son qualified for SSI on the first try-even before he had been hospitalized-I applied because I was going broke with all my co-payments. Social Security told me I didn't qualify because my income was too high but somehow (maybe my crying) and it all worked out. I get very little, if any cash money monthly, but at least they cover all his co-pays and things my regular insurance doesn't cover.

Anyway, what about the KATIE BECKETT WAIVER? I'm not sure if that's the medicaid waiver you spoke about but there is no income qualifications, it is based on your child's income, which obviously is zero.

If you'd like feel free to pm me and I can go into more detail about hospitalization. My son has a diagnosis of PDD; bi-polar, mild mr and ADD

 

[jodifla]

I'm sorry you are going through this. I hope today is a better day and your DH has come around, too.

What does the psych say about these threats to kill you, though? It does seem like that might require a more drastic step. I'd be afraid not only for myself, but for DH and my other children.

 

[ireland_nicole]

thanks for your support guys. No, things are not any better, in terms of DH we're still in a holding pattern. I finally opened up w/ one of my pastors, and they are planning to talk with him. I hate to bring the issues up outside of my marraige, but if I can't talk to him, someone needs to. I really do think he'd regret leaving when he "woke up" and came to his senses. It's like he just can't see anything but how hard things are right now, and can't make rational decisions at the minute. I'm praying he's able to get past this, but in the meantime just trying to get through the day.

No massive meltdowns the last couple of days. Although now she's telling weird lies to the teacher- yesterday she told her that Mommy said she was supposed to take the bus. (umm, we live 2 blocks away, there is no bus, you can imagine the panic attack I almost had over the fact that my kid almost got on some random bus to God only knows where. Thankfully, the teacher called me to confirm.)

We do have a call in to the psychiatrist, and an appointment with the endocrinologist today to see if she's starting to enter puberty w/ hormone changes possibly contributing.

We're trying to change some things up with her behavioral interventions, too.

It is just so hard; but I really appreciate yalls support. I still feel like a terrible mom to her, and know I really need to deal with my pent up frustration and anger about how her disabilities are affecting our family. I am actively looking for a counselor/therapist for myself, too.

 

[LavenderPeach]

I don't post over here very often but sometimes lurk. I just wanted to say: and I'm sorry you're going through a rough time right now.

I can definitely relate to some of what you're going through but I don't have any advice on helping your DD. We are just starting our journey with autism/asperger's so I'm new to all this.

I do have a suggestion that might help you with your DH though. Have you ever heard of the book Love and Respect by Emerson Eggerichs? I've been reading through it recently and it's given me a better understanding of how men and women think differently and it gives lots of practical advice on things you can do. It's written from a Christian perspective so it might not be for everyone but since I see you go to church I thought it might be helpful. The guy who wrote it also has conferences and marriage retreats, etc. Here's his website if you're interested: http://loveandrespect.com/ Anyway, I don't know if that would be helpful for you or not but thought I would mention it just in case. I will be praying for you - if that's okay.

 

[ireland_nicole]

More than ok, prayers are very much appreciated- thank you.

 

[KPeveler]

Is there any "medical diagnosis" you can pursue, so things are more covered by insurance? I have a weird neuro problem which has been labeled "severe chronic hypersensitivity." It acts like SID/SPD (which i may have which this has made worse), but with a medical name, we can get prescription coverage. I take two meds which help calm down the hypersensitivity. (i was so sensitive for touch that clothes really caused pain).

Just a thought... I am not saying to lie to doctors or commit fraud or anything!!! I am just saying that sometimes doctors can give things proper names that are not generally pursued, because they fall under the "ASD" umbrella...