please share how YOU cope as the parent

Post Reply New Topic

Run away from home. Kidding/not kidding. A couple times a year, my husband and I take turns sleeping in a hotel. ALONE. We find a cheap room on priceline, one parent stays home, and the other one leaves for the hotel around dinner time, to return th next morning. It's the BEAT!! !! ! One whole night where you can determine you own schedule without having to worry about anyone else at all, not even your spouse! We call it "running away from home", and fully support each other when that person hits the wall and has to go. I get a six month boost of energy for every one night I get to go away on my own.

Just found this board. My daughter was diagnosed with Asperger's last year. She is in middle school, and our life in general is a daily juggle and I am the clown who obviously isn't very good at juggling . Everywhere else in my life is a lesson of control, got it all together, very type "A" personality, etc... except when it comes to our only child. Her grades yo-yo all over the place, she is on a 504 plan which to date has been fairly useless, we can study things till we are blue in the face, and she seems to get it, but if there is even a fly in the room, or the wind blows wrong, she bombs the test... Never a comprehension issue, always a focus/attention issue. Teachers don't understand, and quite frankly I don't either. I struggle daily with it, me and my 'OCD' personality, was Class Valedictorian, "A's" came easiliy to me...

She is my test in life, I tell myself every day. Prior to having her, everything had a place, and everything was in its place. I had order, I had consistency. She is and never will be any of those. However, she has taught me a great many things. She has taught me life isn't perfect, there are ways to see life outside the box, love of all things animals and little kids, empathy is overrated, social relationships are an option not a must, and so much more...

How do I cope with it all when all I wish to do each day is crawl in a box. She doesn't have the answers for me, no matter how hard we try to pull them out of her. They are not there, and frankly may never be. We instead double down. For ever failed grade, for every social miscue, for every impulsive action, we double down and regroup. Discuss what went wrong, and learn from it together (her father, myself, and her). We have family meetings, we come up with a plan, and attempt to implement until the next blow up occurs. At some point, she will graduate, find her way in this ever so unforgiving world, and we will all be better off for knowing her and being part of her world.

Minera,

Hi.

I am a very grade-oriented person, too, and yep, it is a transition. I would probably have been more "Tiger Mom" but that is not going to play. It seems like you have got it though. You just have to keep telling yourself that those criteria don't apply.

Minera,
Could you get an IEP (Individualized Education Plan) instead of a 504? In the IEP ask for all testing to be done in a quiet room with only a teacher and your child. The school can absolutely provide this and likely already does to other kids. It works well for some! (To get an IEP, you just need to send a letter to the school principal requesting that you feel your child needs an IEP and you would like to convene a team -- special ed teacher, guidance counselor, teacher, possibly principal, school psychologist and you -- to create one that will better meet your child's current needs than the 504. They may want to do some psychological testing or observation (functional assessment of behavior can be helpful in clarifying triggers, concerns). You also may be able to get an education advocate through your county or county intermediate unit to help you figure out how to do this and what things your child might need to succeed. With the IEP, you can also request specific things for specific subjects, can ask for time in the special ed room or guidance office to be added into the schedule or allowed as needed (my daughter was suppose to give a pre-written note to her teacher if she needed to leave to get a break from things in order to go to one of these areas).

Giving up on the grades/plan was hard for me too. But I do feel like I am growing as a person and no longer so limited in "how things should be"... Sometimes we just have to let life unfold. My daughter (who has Asperger's) is in 10th grade now and this year was especially difficult. Hang in there!

I agree with ASDMommyASDKid about intelligence has nothing to do with whether you get special ed services. There is a special ed category for autistic services and also for emotional support. It has nothing to do with intelligence (FYI my daughter missed "gifted" category when she was in elementary school by 4 points -- she has a fullscale IQ of 126 and has taken honors classes and even an AP class.). It's about accommodations and the Special Education teacher overseeing the use of the IEP -- that teachers understand what the accommodations are and provide them for your child. My understanding is that this is a federal mandate not a state one. We also never had private evaluations done -- the school provided psychiatric and psychological testing. It can, however, be difficult to push some schools to go this direction as if they cannot provide what the child needs, they will have to provide education in a different setting (although that is a whole other fight that I've known few to win...). I just found my procedural safeguards notice packet. Here is the place to start as long as you are in the US: Bureau of Special Education's Consultline, a parent helpline at 800-879-2301 -- they can discuss your individual situation and provide options and resources (even if your child has not been officially diagnosed yet but is suspected to have a disability such as an autism spectrum disorder). Hope this is helpful!