Do you ever get resentful at your ASD child?

[Thing1Thing2]

He is not diagnosed yet, but we have been told most likely Aspergers.

He needs so much attention, and I can't give him what he needs. I'm exhausted trying to do everything for him, while taking care of a 5 month old. He needs constant watch, can't calm himself down when he gets excited, hurts the baby, wakes the baby up, starts making all these wierd, loud noises, and saying wierd words over and over and over again, starts freaking out if I try to serve him a meal or take him out, wants me to play with him, but then won't let me do anything except what the story line in the book or movie was.

I'm going crazy!

I give and give and give and nothing helps this kid. I'm beside myself. He doesn't listen, does things on purpose just to irritate me and then gets his feeling hurt when I get so frustrated and have to take away a privelege. And I don't even know if what he's doing is his fault or if it's just because he is special. I have no tools with which to handle this, have no clue what I'm doing and can't even get a diagnosis because he is ahead in language and math/puzzles.

Now he's flapping and screaming and going wild. I don't even know what to do anymore. I want to lock myself in the room.

Edited by Thing1Thing2 - 2/22/12 at 7:08am

[ErinYay]

Being ahead in language and math shouldn't preclude testing, nor a diagnosis. Push the school district, and/or seek out your own evaluations, at the very least an OT eval, as it sounds like at least some of his meltdowns are sensory in nature?

And to answer your first question, no. My kiddo's only 26-months-old, which is such a... pleasant time in a child's life regardless of special needs, so it's extremely easy for me to only feel frustrated at worst and empathetic at best, which is a great deal of the time (I have mild AS.) I also have a 5-month-old, but DD1 is completely oblivious to her sister, which does hurt my heart a little, but objectively, it makes things *way* easier. 

Good luck to you.

[Thing1Thing2]

Hi ErinYay - I have an appointment with a developmental pediatrician, but that is not until May. We did the OT eval and they found sensory issues, which led to therapy for about 6 weeks and then the insurance company wouldn't approve of any more. His motor skills are also inthe 5th percentile, which I would assume would be a cause for concern.

It has been over a year since we noticed some thing was off and I can't believe how long it is taking to get him some help. I have a thread somewhere on here with the school districts findings. Basically, they said he was ahead in language and math and they saw no potential learning problems. And they won't diagnose him, because if its not a learning problem, its not their responsibility. But I had 2 seperate evaluators from the school district say it looks like he may have Aspergers, but that doesn't get diagnosed easily in a 3 year old.

And also the fact that he is well behaved and well mannered in new situations (I think because he is stimulated enough), makes me look like I'm making it all up.

I used to be on top of all of his little quirks - and yes, it seems they are sensory in nature. I also see that he just doesn't get enough attention/stimulation and then he goes wild. I used to be able to keep introducing new things and creating new games all.day.long but I just cant do it with a 5 month old and 4 hours of broken sleep a night. And now, because of financial reasons, I have started working a part time job at night. I'm dead in the morning and just want an hour or so to relax before having to "jump" into action. This screws up my whole day with DS because he starts stimming and making noises and doing things he knows he shouldn't do, purposely to get my attention.

I just feel like Im losing him, and I feel terrible that I dont have the energy to devote my every last ounce to him. Its like no matter how much I give, he still ends up unhappy. I don't feel I have the tools available to remain level headed in these times, and I revert back to yelling and threatening - which I feel so bad about.

Im a highly sensitive person myself and need quiet time and time to unwind, especially now that Im working. But I still feel like he needs -deserves- help and not to be reprimanded, but redirected. I haven't been able to do this and the feelings of failure are overwhelming.

I was abused as a child, pretty badly, and I think this has something to do with my feelings of being overwhelmed. I also think I have some form of Aspergers and/or OCD, ADHD. But I haven't been diagnosed.

I knew I never wanted to be a mother, because I cant bear the thought of screwing up my kids the way I was screwed up. When I became pregnant, I told myself that I would give all of my energy to helping my child. The second, well he was a "whoops!" And now I'm in over my head.

Originally Posted by ErinYay 

Being ahead in language and math shouldn't preclude testing, nor a diagnosis. Push the school district, and/or seek out your own evaluations, at the very least an OT eval, as it sounds like at least some of his meltdowns are sensory in nature?

And to answer your first question, no. My kiddo's only 26-months-old, which is such a... pleasant time in a child's life regardless of special needs, so it's extremely easy for me to only feel frustrated at worst and empathetic at best, which is a great deal of the time (I have mild AS.) I also have a 5-month-old, but DD1 is completely oblivious to her sister, which does hurt my heart a little, but objectively, it makes things *way* easier. 

Good luck to you.

[ErinYay]

I really feel for you. DD1 is extremely sensory-seeking, and it seems no amount of sensory stuff is enough for her. We have a trampoline station, and huge pillows we pull out in the evenings so she can play Crash, wherein she runs as fast as she can, crashes into the wall, comes back, and crashes into me. For half an hour. Every. Night. And she only weighs 25lbs!

Hang in there. 

You've probably read them, but The Out-Of Sync Kid, The Out of Sync Kid Has Fun, and Engaging Austim have been probably the most helpful books for us, so far. (She gets an hour of speech a week through EI, and is supposed to get an hour of OT each month, but we've yet to meet with her.)

[Linda on the move]

I know that in some parts of Mothering this is a taboo word, but have you considered preschool?

Partly to give yourself a real break?

It really is OK to take real breaks and take care of yourself. I find that I'm a better mother to my child when I spend less time with her.

[Thing1Thing2]

You've probably read them, but The Out-Of Sync Kid, The Out of Sync Kid Has Fun, and Engaging Austim have been probably the most helpful books for us, so far. (She gets an hour of speech a week through EI, and is supposed to get an hour of OT each month, but we've yet to meet with her.)

Haven't read Engaging Autism. Thanks for the rec, I just ordered it from my library. And the crashing game sounds like something DS would love!  How big are the pillows that you use? Do you put them on the wall? What a great idea!

Hi Linda, yes I know it is frowned upon in some circles, but I have no problem with preschool except that we cant afford it right now. We won't have to pay anything if we wait until he's 4, which will be in June and, yes I totally need the break. And I know he will really benefit from the stimulation and routine.

4 years ago, I planned on homeschooling or at least keeping him home until kindergarten. I had no idea things would turn out as they did. No idea at all. My view on mothering has changed so much and I kind of feel that my identity as a mom was wrapped up in the idea that my child would be typically developing. I'm still changing every day and how I see myself as a parent to my children is changing as well. But as Linda said, I do need to take care of myself in order to become the mom I want to be.

I called my homeopathic Dr tonight after work and just cried. He says I need to get more sleep  Kind of hard to do when you have 2 non-sleeping kids.

[ErinYay]

Ditto preschool. We always thought we'd homeschool, but between my own social issues and V's needs, we'll be pushing for her to start in January, right after she turns 3, but we live in a city with a bunch of public preschools that start at 3 (most do start at 4), including public Montessori (which we doubt will be a good fit- V needs 0 structure or 100% structure.)

Since your buddy's over 3, the school district is to provide services, so even if he's too young from preschool, he can get (if he qualifies) speech, OT, etc now, all paid for by the school district. I think in your situation it would be a fantastic idea to contact the school district and see what the procedure for getting him evaluated would be.

Before I had the genius idea to use pillows, she's just crash into ME. Now I throw down a body pillow and beanbag chair and call it good.

[Emmeline II]

Originally Posted by Thing1Thing2 

It has been over a year since we noticed some thing was off and I can't believe how long it is taking to get him some help. I have a thread somewhere on here with the school districts findings. Basically, they said he was ahead in language and math and they saw no potential learning problems. And they won't diagnose him, because if its not a learning problem, its not their responsibility. But I had 2 seperate evaluators from the school district say it looks like he may have Aspergers, but that doesn't get diagnosed easily in a 3 year old.

They may not be able to diagnose him with Asperger's, but they are required to offer therapy to deal with deficits where he meets the standards for therapy, such as with social skills (through ST). You don't need a diagnosis to get therapy through the school district.

I would get a copy of the evaluations and make sure they have standard score and percentile scores, and sit down with "From Emotions to Advocacy" and IDEA (wright'slaw has a special education book as well), figure out where they are not meeting their obligations to him, then start calling writing the appropriate personnel.

http://www.cfw.tufts.edu/external.asp?url=http://www.wrightslaw.com/info/ei.index.htm&prev=http://www.cfw.tufts.edu/?/category/education-learning/3/topic/early-intervention--practices/219/site/wrights-law-early-intervention/1085/=

Congress encourages states to provide Early Intervention Services so children with developmental delays and other disabilities will receive treatment early. Congress enacted the Early Intervention Program for Infants and Toddlers to provide interagency coordination of services to children from birth to two years of age. Under IDEA, states must ensure that children with disabilities are eligible for special education services by age three.

How Can We Get an Independent Evaluation (IEE) by ... - Wrightslaw

[RiverTam]

You need to get some respite care. Can anyone take the kids so you can have a weekend?

Where are you?

If you can get a DX, you can request services from the school district again.  

There are free services in my area to get DX'd -- the Autism Center at SIUC and the Thompson Center for Autism at University of Missouri will do a medical/psych DX for free.

Other universities in other places do the same. If you call around your area, someone can probably point you in the direction of a university or clinic that will do DX services for free.

That would also allow you to access SSI/SSDI, Early Intervention, school district services, help from Easter Seals, etc.

And preschool is an excellent idea.

[beachcomber]

Originally Posted by Thing1Thing2 

He is not diagnosed yet, but we have been told most likely Aspergers.

He needs so much attention, and I can't give him what he needs. I'm exhausted trying to do everything for him, while taking care of a 5 month old. He needs constant watch, can't calm himself down when he gets excited, hurts the baby, wakes the baby up, starts making all these wierd, loud noises, and saying wierd words over and over and over again, starts freaking out if I try to serve him a meal or take him out, wants me to play with him, but then won't let me do anything except what the story line in the book or movie was.

I'm going crazy!

I give and give and give and nothing helps this kid. I'm beside myself. He doesn't listen, does things on purpose just to irritate me and then gets his feeling hurt when I get so frustrated and have to take away a privelege. And I don't even know if what he's doing is his fault or if it's just because he is special. I have no tools with which to handle this, have no clue what I'm doing and can't even get a diagnosis because he is ahead in language and math/puzzles.

Now he's flapping and screaming and going wild. I don't even know what to do anymore. I want to lock myself in the room.

First of all, HUGS. You're in a really tough spot right now. You have an almost 4 year old Aspie and a 5 month old baby. That's exhausting and you have every right to be tired out. Also, you are on your way to a Dx but haven't accessed it yet. Once you have a Dx, you may be able to access an aide for preschool to get him out of the house a few mornings a week. You can also access interventionists who can come and work with him, etc., giving you some time and space away.

I know exactly how you feel. This was me with my 4 year old DD when my son was 6 months old. She was SOOOOO intense and had to be interacted with CONSTANTLY and it had to be HER way and HER games and HER dialogue. She loved "guys" where she'd re-enact scenes from favorite programs with any toy handy. Oh, it was draining. It felt endless and we were not-quite-diaxnosed then, too, so I kept wondering and thinking I was doing "it" wrong. Heh.

It WILL get better. Honest.

[Thing1Thing2]

Originally Posted by ErinYay 

Before I had the genius idea to use pillows, she's just crash into ME. Now I throw down a body pillow and beanbag chair and call it good.

Lol! I'm definitely going to try that! He used to crash into us when he was younger and it really hurt. We somehow got him out of that, but maybe it was better than all this pent up frustration it seems he now has.

Also - thought I'd ask since your DD seems very much like my LO. He is sensory seeking, but there's something else too. He gets excited by things and can't calm down. Like me singing him a lullaby... he is calm and ready for bed and he looks dreamily at me and looks *so* happy for about 3 seconds and then all of a sudden goes wild. I mean starts bouncing off the walls. Kicking me, jumping on me. I dont understand. Or when we decide to go out. He gets so excited he cant even sit still long enough to let me dress him. I end up being kicked and fought. I have no idea what to call half of the things he does. I have no idea how to stop triggering this excited energy that overtakes him. Just wondering if that happens to your LO and if you've found a way to handle it.

Quote:

Originally Posted by Emmeline II 

They may not be able to diagnose him with Asperger's, but they are required to offer therapy to deal with deficits where he meets the standards for therapy, such as with social skills (through ST). You don't need a diagnosis to get therapy through the school district.

I would get a copy of the evaluations and make sure they have standard score and percentile scores, and sit down with "From Emotions to Advocacy" and IDEA (wright'slaw has a special education book as well), figure out where they are not meeting their obligations to him, then start calling writing the appropriate personnel.

How Can We Get an Independent Evaluation (IEE) by ... - Wrightslaw

Hi Emmeline - I do have a copy of his evaluation. I actually typed it all out and posted it here on one of my threads for him. I will see if I can find it. I'm pretty sure it has percentiles, although I'm not sure if I posted the actual percentiles. Thanks for the resources!
 

[Thing1Thing2]

Ok here are his evaluation scores.

http://www.mothering.com/community/t/1322732/what-happened-at-your-pediatric-neurologist-evaluation-possible-dx/20#post_16742539

By the way, I changed my name... used to be BonnieNova.

[Thing1Thing2]

Hey RiverTam, I'm in NY on long island.

I knew that if I get the DX I can get services from the school, but now we've moved to a new school district so I'm not sure how this affects the previous eval from the old school district.

Originally Posted by RiverTam   

There are free services in my area to get DX'd -- the Autism Center at SIUC and the Thompson Center for Autism at University of Missouri will do a medical/psych DX for free.

Other universities in other places do the same. If you call around your area, someone can probably point you in the direction of a university or clinic that will do DX services for free.

That would also allow you to access SSI/SSDI, Early Intervention, school district services, help from Easter Seals, etc.

And preschool is an excellent idea.

And thank you beachcomber. Its reassuring to know that I'm not the only mom who gets frustrated with having to play things his way. Sometimes I try to push my new story line just to give myself some sort of way of enjoying the playtime. Its so tedious sometimes. I sure could use help or a weekend getaway, but just don't have the support here (or the finances).

I have almost a years worth of videos of him stimming, ticking, bouncing off the walls and so on... Now I just have to organize them for the next doctor or evaluator that we see.

Originally Posted by beachcomber 

I know exactly how you feel. This was me with my 4 year old DD when my son was 6 months old. She was SOOOOO intense and had to be interacted with CONSTANTLY and it had to be HER way and HER games and HER dialogue. She loved "guys" where she'd re-enact scenes from favorite programs with any toy handy. Oh, it was draining. It felt endless and we were not-quite-diaxnosed then, too, so I kept wondering and thinking I was doing "it" wrong. Heh.

It WILL get better. Honest.

[RiverTam]

Originally Posted by Thing1Thing2 

Hey RiverTam, I'm in NY on long island.

Try the NYU Child Study Center. I think they do assessments free or at low cost. If they can't, they might be able to direct you to someone who can. I think they have a site on Long Island.

http://www.aboutourkids.org/research/institutes_programs/asd_program/about_program

You could also try the autism clinic at Stony Brook or the one at Columbia:

http://www.newyorkautism.columbia.edu/

http://www.stonybrookmedicalcenter.org/codycenter/

[Linda on the move]

Originally Posted by Thing1Thing2 

I had no idea things would turn out as they did. No idea at all. My view on mothering has changed so much and I kind of feel that my identity as a mom was wrapped up in the idea that my child would be typically developing. I'm still changing every day and how I see myself as a parent to my children is changing as well.

I totally relate to this. I thought I had everything all figured out, but I had it figured out for a different kid.

I've just had to parent the child that I have to the best of my ability, and sometimes, I feel like I'm just making stuff up as I go along.

She'd an amazing person, but half the time I don't know what I'm doing.

[HarperRose]

I read this and just felt overwhelmed, exhausted, and sad. I remember those days with my oldest & had a baby. They're 18 mos apart. 

First, you deserve a million hugs!  x's that by a million. ;)

Second, school is legally obligated to eval and offer whatever services he needs, dx or not.

Third, be patient with yourself. And your kids. I used to lock us all in a room and let him play while I slept w/ the baby. 

Fourth, have your tried melatonin? They make a liquid. If I'd known about it when Max was younger, I'd have started using it back then! It's been extremely helpful for us. I even give it to my 4 yr old.

Fifth, I also have Aspergers. I blog about it here:Parenting with Asperger's Syndrome and I have a facebook page. Some of the topics I'll be addressing soon involve stimming and how I coped with things when Max was a toddler, before his dx and before I knew I have AS, too.

Sixth, I'll say it again: Be patient with yourself. It's ok to be overwhelmed. It's ok to wish your kid was "normal" and it's ok to mourn what you don't have. Just don't let that consume you. Just the other day, I wished I didn't have AS. I was having a bad day and my sensory stuff was interfering with functioning as I usually do. 

And another hug. 

~ Carrie

[Thing1Thing2]

Thanks River Tam for the info!

Linda - yes totally feel like I'm making stuff up! And things tend to fall apart so easily, which makes it harder to know if what I'm doing is helping or hurting. I could really use an Aspergers support group in my area.

HarperRose, exactly how I feel lol! Overwhelmed is the perfect word for it. 18 months apart must have been much, much more difficult.

I've heard so much about melatonin, but haven't tried it yet because I'm working on ogetting other supplements into him right now. He's finally able to take the cod liver oil and now we are working on getting him to swallow the mini-capsules so I can put other vitamins in them. I will look into melatonin soon. Thanks for the tip.

I suspect I might also have some aspergers, since alot of his symptoms come from me. I've read your blog before - its wonderful!

You're very sweet - thanks for all the hugs and encouragement!

Originally Posted by HarperRose 

I read this and just felt overwhelmed, exhausted, and sad. I remember those days with my oldest & had a baby. They're 18 mos apart. 

First, you deserve a million hugs!  x's that by a million. ;)

Second, school is legally obligated to eval and offer whatever services he needs, dx or not.

Third, be patient with yourself. And your kids. I used to lock us all in a room and let him play while I slept w/ the baby. 

Fourth, have your tried melatonin? They make a liquid. If I'd known about it when Max was younger, I'd have started using it back then! It's been extremely helpful for us. I even give it to my 4 yr old.

Fifth, I also have Aspergers. I blog about it here:Parenting with Asperger's Syndrome and I have a facebook page. Some of the topics I'll be addressing soon involve stimming and how I coped with things when Max was a toddler, before his dx and before I knew I have AS, too.

Sixth, I'll say it again: Be patient with yourself. It's ok to be overwhelmed. It's ok to wish your kid was "normal" and it's ok to mourn what you don't have. Just don't let that consume you. Just the other day, I wished I didn't have AS. I was having a bad day and my sensory stuff was interfering with functioning as I usually do. 

And another hug. 

~ Carrie

[HarperRose]

I'm glad I was helpful. :)

Aspie Quiz

Aspergers Traits in Females

[Thing1Thing2]

Wow insightful info... especially the one about aspie women. Helped me not to feel so abnormal. Thanks!

[HarperRose]

No problem. :)