rambling post about my daughter with aspergers

[Frelle]

I posted this on my blog, and my Hive Mind friend, 2lilredsnc recommended I post this on the SN board to see if others are having similar struggles.

 

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Some wandering reflections on today...

 

This morning was another battle about clothes. I'd say we have one of these every week at some point or another. She had an idea about what she was going to wear but had not laid it out. That is usually a really bad thing. Rob and I were out last night, babysitter didn't make sure to ask. Well, this morning I invited Lily and Grace to come out to Starbucks with me for chai. Both girls seemed a little clingy after I had been gone a lot yesterday. Grace couldn't find anything that felt comfortable. I put up with the searching, the whining, the frustration, and the sobbing. I remained rational and supportive, and tried to give her options. Even looked in the dirty laundry for her. It got later and later. I got to a point where we needed to leave. I gave her a choice between two things, she refused. I told her we needed to leave, she ratcheted it up a notch and started throwing clothes and begging me to not leave, and generally hyperventilating and gagging on her sobs. I was trying to get cereal for Jack and Felicity before we left, and my hands were shaking so bad from the ongoing auditory assault and my blood pressure was so high that I dropped and broke several things.

 

We finally got in the car. She and Lily started in on each other with the poking and the tattling. Grace was upset and not stable, and always takes it out on some child. I thought I was going to go off the deep end. I grabbed out my Rescue Remedy (herbal supplement used for shock victims, actually. Herbal valium, if you will), and put on some Steven Curtis Chapman. Loud.

 

Finally, some peace.

 

Ended up just going through the drive thru because it was SO much later than I expected. Got to church, everything was just ducky for Grace.

 

I was shell shocked for most of Sunday School class. I asked for prayer for Rob's business trip (each week 3 days, sometimes more), prayer for Grace's dental appt which never goes well because she freaks out on the anesthesia and then freaks out about the tingly sensation when the numbing meds wear off. A woman in my class mentioned that she wished she could help me, that I sounded overwhelmed. I told her to just pray for me. Another friend mentioned that she and her husband wished there was something they could do for me (she had been in the Sunday school class) and I asked for prayer for my ability to endure and cope, stretch and grow.

 

I took Grace on an errand to the store to get cucumber and onion around 3pm. She wanted to bring a book into the store. I was in a hurry, I told her no. We needed to move fast, she couldnt read while we walked, and I didn't want her to lose the book. She got back into the car, locked the doors, crossed her arms over her chest, and glared at me. I counted to 3 and she got out. We got in the store and she yelled at me about the book again, and ran into the bathroom. I got my produce and went after her. Had another discussion about how we needed to move quickly, and said I wanted to get garlic bread. In the garlic bread aisle, there happened to be flip flops for sale, and she asked if we could look at them. She was happy to find several that were comfortable and I told her she could have them.

 

Her love language is gifts. She told me that she knew I loved her because I bought her shoes. All was rosy.

 

I took the opportunity to tell her that I could feel her love when she said I did nice things for her, or cooked a good meal, that what speaks love to me is words of affirmation. She apologized for an incident on Valentine's Day that I dont remember, but I forgave her for it. One nice little teachable moment today.

 

I left for the choir party with repeated ritual "hug kiss nosy", she must have asked 6 times for it as I was trying to leave.

 

She did not call me while I was gone to ask me to come home. Yay! Good thing, because I was trying unsuccessfully to not have a breakdown. Had a good emotion filled talk with a wise and wonderful friend. Wish I hadn't cried around other people, but what are you going to do, you know? They were busy, and I didn't mind sharing with my friend. I barely could even enjoy being out of the house today at the choir party, just so overcome with the yelling and rage and trying to make sure I didn't flip out on her while she was melting down. Why is it so hard to act like an adult around her? I wonder if other moms of Autism spectrum kids have this issue.. I think many moms of teens do!

 

So, the end of the day, and I am still processing it all.

 

This whole brand new perspective on Grace with her official diagnosis, learning about Aspergers and how I have to bring my "A-game" every minute so I can avoid meltdowns just kicks my butt. I know I will grow and learn, and being at the beginning of growing always sucks. I know with her sensory meltdowns, if I can see them coming, I can avoid them. If other 3 kids aren't needing me, we aren't in a hurry, etc. We still don't really have a sensory diet. I hear other moms talk about how their OT gives them a sensory diet. I have rough outline, but feel like I would need a weekend away to match up what OT recommends with activities in the Out of Sync Child books and create a sensory diet for her.

 

If I get bad sleep especially, I am really short tempered and snarky and don't really see her Aspergers, what I see is a defiant 9 yr old who can't act her age. For all the world, she seems like your average 9 year old, and there are days when that's all I see or want to see too. I get SO frustrated at her, and she is just being who she is. I really JUST read about uneven development in Aspergers/Autism and see now how that is what is really going on. Years of expecting much more out of her and and belitting her to act her age, now I know she has a different maturity level trajectory. But I dont know what to expect of her now. When her 6 yr old sister is in many ways becoming more mature, what do I do with that? This past year, they have both sorta been age 6. But Lily is growing up and Grace, well, isn't. I am just learning about the whole concept and how even though Grace is 9, she has a high school level reading ability, but a K4 emotional maturity level. She's all over the place. This is an aspect I need a lot of direction with from other moms of kids on the spectrum. She just CANT modulate her emotional reactions. She wont take responsibility to get herself together to do well, and when I see her melting down and offer suggestions of things her OT has told her to do when she starts feeling stressed, she refuses. I don't really believe she is "old enough" to get it.

 

Also, Lily is starting to understand there's a difference. She is embarrassed at Grace''s sensory meltdowns, even if they are just at home or in the car, especially when they are in public. She is not understanding why we tolerate older sister's fits, etc. Last night I saw several kids books on autism spectrum.. for Aspergers and for Autism. BUT we haven't talked to Grace about having Aspergers. Dont feel like I can get a kids book on it to help Lily till we tell her.. With her emotional maturity being pretty delayed, K level, it doesn't seem appropriate to talk about it with her. I don't like the whole label concept being put on my child for her to understand being "different", yet books I'm reading recommend talking about the differences in the way you think and process with your child. She loves therapy, doesn't mind having all this testing done, I don't think she thinks anything is amiss. Its a quandary.

 

Thanks for listening. I feel a lot better just getting all this out there.

[8filltheheart]

I just wanted to let you know that you are definitely not alone. I have been absent from WTM forums for quite a while until recently and haven't shared about our ds in ages.

 

Our ds is 17. He went through a myriad of alphabetic labels prior to being diagnosed with Aspergers. Life with him has always been a roller coaster.....times of calm followed by periods of complete loss of control. The yrs since he hit puberty have been especially difficult.

 

It got to the point where his presence in our household was having an extremely devasting effect not only on me and my ability to cope, but his younger siblings were all exhibiting signs of severe stress.

 

We made the decision at the beginning of the yr to send him to a very small private boarding school for boys. It was a life saver for our family. The younger children have finally started to recover. I am no longer on the brink of emotional collapse. He has learned a lot of coping skills, broken a lot of his destructive habits, and has had to refrain from verbal assaults (he was cussing like a drunken sailor. It is not tolerated at all at the school). He has had zero access to any electronics (no radio, tv, or computer). He sounds proud of his accomplishments. His self-esteem was rock bottom the last yr.

 

I am so thankful that we found positive intervention for him. I think without it that he would have spiraled to the point where we couldn't cope with him at all. Ever.

 

I read an article a few months ago that left me crying. It was called the Monster Inside my Son. While our ds never got anywhere near the point of destructiveness that she describes, I know that if he had been in group homes like she describes, he could very easily have gone that direction. I know that w/o the intervention he has had, a group home might have been his only alternative and I might have been experiencing the same horrible reality with my ds in the future.

 

It is a sad read, but for anyone that has a violent teenage Aspie in their life, I recommend reading it b/c you aren't alone.

"The monster inside my son" by Ann Bauer. http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/index.html

 

It also makes me want to encourage all mothers who have children that are not responding to treatment at home, counseling, CBT, meds, or whatever other routes you might have tried, to keep trying to find something to help your child. Just b/c they have a disability does not mean that the behaviors are excuseable. The older they get, the more difficult life is going to become. Aspergers was pretty much unknown when our ds was young. I wish intervention had begun much earlier in his life and that our family could have been spared the trauma that we have lived through.

 

But, for the first time in over 4 yrs I am very hopeful for his future.

[Orthodox6]

I sent you a PM an hour or so ago.

[Orthodox6]

I just read the article from the link provided. I'm trying, but I cannot accept that the young man described has Aspergers only. There have to be comorbidities which make his condition so extreme. Even the staff at the Mayo Clinic can misdiagnose a patient, or diagnose with only partial accuracy.

 

I am not dismissing the gravity of what I read, nor questioning that the events happened.

 

Momof7, if you were nearby, I would run over and hug you as hard as I possibly could. What you all did was heart-wrenchingly painful and required super-human strength. But what you did was "whole family treatment", and was done in love. The real kind of love, not "sappy emotionalism".

 

Our story is a tame bedtime story in comparison. Our terrified little boy, frightened of everything in the universe, unable to make the simplest decision, unable to leave the house unless the entire family was with him, finally turned violent when barely seven years old, and tried to plunge a kitchen knife into his own stomach.

 

Now he is fifteen years old: a straight-A honor student at a therapeutic private day school, an altar server at church since age eight, liked and loved by adults and children in all of his environments.

 

Not what we foresaw when he was three years old, that is for sure.

 

We give 100% credit to God. In addition, we were blessed by good medical care, and a phenomenal school. I don't know why our "story" turned out so well, but this is why I always write and speak encouragingly to other people struggling with the same things we struggled with and wept inconsolably over. I'm not "Pollyanna", am not that naive. I just believe that things CAN turn out well.

 

Even for the young man in the article -- had all the guesses, instincts, diagnoses, and attempts come together just right.

[8filltheheart]

I just read the article from the link provided. I'm trying, but I cannot accept that the young man described has Aspergers only. There have to be comorbidities which make his condition so extreme. .

 

Our experiences in just how difficult getting an appropriate diagnosis is makes that very well a possibility. However, I do believe it completely possible as well.

 

Our ds does tend to incorporate the worst behaviors of whatever environment he is in. He went to one school for only a semester and the language and attitudes he picked up in those few months were impossible for us to overcome via counseling/therapy. If he had gone into a group home where there were even worse behaviors, he would more than likely have added them to his daily behaviors as well.

 

Our ds would become violent when you tried to get him to disengage from activities he wanted to continue. He normally didn't attack me physcially, but would punch holes in walls and kick holes in doors. Yet last summer we had to have him committed when he did attack me. Our psychiatrist and therapists all stated that it is not uncommon is Aspie kids to have violent behaviors, especially teenage males.

 

My reaction when I read the article was that I praised the Lord for not having allowed our ds to be in an environment where such negative behaviors were ever modelled in front of him or there might have been very little degree of separation in our realities.

[Orthodox6]

I pray that I did not hurt your feelings in any way. I strove not to do so. But if I did, please forgive.

 

 

Our experiences in just how difficult getting an appropriate diagnosis is makes that very well a possibility. However, I do believe it completely possible as well.

 

Our ds does tend to incorporate the worst behaviors of whatever environment he is in. He went to one school for only a semester and the language and attitudes he picked up in those few months were impossible for us to overcome via counseling/therapy. If he had gone into a group home where there were even worse behaviors, he would more than likely have added them to his daily behaviors as well.

 

Our ds would become violent when you tried to get him to disengage from activities he wanted to continue. He normally didn't attack me physcially, but would punch holes in walls and kick holes in doors. Yet last summer we had to have him committed when he did attack me. Our psychiatrist and therapists all stated that it is not uncommon is Aspie kids to have violent behaviors, especially teenage males.

 

My reaction when I read the article was that I praised the Lord for not having allowed our ds to be in an environment where such negative behaviors were ever modelled in front of him or there might have been very little degree of separation in our realities.

[8filltheheart]

I pray that I did not hurt your feelings in any way. I strove not to do so. But if I did, please forgive.

 

LOL! Trust me....you did not hurt my feelings! I am pretty much immune when it comes to this topic! But one thing I have learned is that no special needs child fits neatly into any prefabricated image. I also know that there are no simple answers or fixes.

 

After the trauma we have lived through, I can only take the author at her word. We have had ours summarily dismissed by family members, so I have vowed to never underplay the seriousness of other parents' ordeals and experiences.

[Wyndie]

:grouphug: to all you dear ladies.