Mom’s IEP: Jen Troester

Hey Ragers! I’m back! Did you miss me? I have been busy on the back end, doing some research, tweaking the design and preparing posts. On Wednesday I will be announcing a giveaway but today let’s stay on schedule with our Mom’s IEP series, shall we?

Today I am happy to share the lovely Jen with you. She’s a hoot to tweet with and she is finding her footing in the world of Autism..

1. First, tell us a little about your family dynamics and what special needs you have become an expert on. I am married to Kai, an off-the-boat German, and we have 2 kids. Katie is 7 and Ben is 4. Katie was diagnosed with Autism last year, right before she turned 6.

2. Mornings are notoriously hard for so many of us. What is the most  challenging part of your morning and how do you deal with it? Getting out of bed! I am not a morning person at all, which is not good when you have to wake up and get 2 kids off to school most days. I am usually up until at least 12am, and sometimes I don’t really get to sleep until around 2am. I don’t really deal well. I just get up, get the kids ready, and try not to act like a complete psycho.

3. Schedules and routines or surprises and winging it. How do you get through the day? Our days are pretty scheduled. Katie is in first grade, so she is away most of the day, and then every afternoon she usually has different therapies. Having a consistent routine is important to her, or else she gets a huge build up of anxiety, not knowing what is coming next. Ben’s days are pretty much all over the map. Some days he has am preschool, and others he goes in the pm. After Katie comes home, I either drag him along to her therapy, or my husband comes home early to stay with him. I feel really guilty that his life is pretty much ruled by his sister’s Autism. He is only 4, but already hates being dragged everywhere and is definitely jealous of what he perceives as fun things Katie gets to do while he sits in a boring waiting room. For him, I try to keep his days pretty routine while Katie is in school, though, and it makes me feel a bit better that we do get to spend a lot of mother/son time together during the week. The weekends are more difficult. They tend to not be quite as structured, and that can lead to a lot of behavior issues for Katie. Getting through the weekends is tough, and they are not days I necessarily look forward to, unless I know we are going to be pretty busy. Hanging out definitely doesn’t work for my daughter. Not having a plan raises that anxiety level, and it makes the weekend an impossible time for relaxation. Most days I just do what I have to in order for us to come out unscathed. A lot of the time I feel like I might lose my mind!

4. Has your family been supportive? How so, or if not how have you tried to help them understand? My mother has probably been the most supportive. She always agreed with us that something was off with Katie, and helped us find professional help. She has worked with special needs kids and saw in Katie a lot of the red flags for Autism. She is also really understanding of Katie’s behaviors, and doesn’t make me feel like a bad mom. The other members of my family don’t understand as well. I still get the vibe that some think all of Katie’s issues are due to bad parenting on my part. No one has come right out and said it, but I am pretty good at picking up on facial expressions when we’re around and hear things through the grape vine. There are those who I am sure think they could do a better job, but they don’t live my life, and I have actual medical professionals backing us up. Even the school, who hasn’t made this an easy road for us, at least admits that Katie has Autism. It’s hard to get people to understand that I can’t just discipline Katie into being what they consider a “good” kid. It’s hard. I wish some of them would read up a little more on Autism and come to a better understanding, but I am not going to force anyone to do that. I have enough battles to fight already.

5. Overall, what is the biggest challenge presented by your child’s illness? How do you handle this? Honestly, the biggest challenge is holding my marriage together. Autism is financially, emotionally, and mentally draining. It is also a huge time suck. My husband and I seem to live separate lives a lot of the time, and at times I feel like we are more roommates than partners in life. When we have alone time, which is RARE, we have fun and I remember why we are together, but the majority of the time, it’s hard. We just don’t get time as a couple, and all the stress we are under doesn’t help. It is almost too easy to lose sight of the fact you actually are married and need to protect the relationship you have. On top of everything else, I live with the constant knot in my stomach, wondering when my husband will throw his hands up and declare he’s had enough.

6. What are the most wonderful qualities about your child that wish others could see more of? Katie is one of the most loving, thoughtful people I know. Sometimes, I think her negative behaviors stick out in people’s minds and they are unable to see the great kid underneath. For example, this past Mother’s Day, she came up with the idea to make me chocolate covered strawberries because she heard me say I liked them. She hounded my husband, pretty much on a daily basis, to buy what they needed to make them. Seriously, for my 7yo to care that much about doing something special for me? I can’t even express how it made me feel. I still want to cry just thinking about it. They say people with Autism can’t see past themselves, and maybe that is partially true since in the everyday Katie does have difficulty understanding other people think and feel differently from her. BUT, she does love and care about the people around her, and that is what I really want people to know about her.

7. What resources would you recommend to other families in your position? The #1 thing every parent NEEDS to do is KNOW.THE.LAW. I can’t tell you how many times a day I hear about families getting lied to and basically screwed over by schools. All through Katie’s preschool years I had no clue what I was doing. I signed IEP’s willy nilly, and believed 100% what I was told. I rarely questioned anything, and when I did I was easily appeased by what teachers and other staff told me. Fast forward to kindergarten when things went horribly down hill and we finally got a diagnosis. If I had known to fight for my daughter when she first started school, and had I know to push about the red flags I was seeing, maybe she could have received more intensive therapy early on. Maybe we wouldn’t be where we are today, had she gotten what she needed earlier. http://wrightslaw.com/ is an invaluable resource, and I tell everyone I know to attend a conference. Also, we are big believer in Michelle Garcia Winners program, Social Thinking. I would suggest any parent with a mid-high functioning kid on the spectrum attend one of her conferences, too. Also, research the local Autism resource centers in your area. They can provide a lot of services and information. Finding a parents support group is important, too. Being able to talk to other parents who are there, or who have been there done that, is what keeps you sane. Having a child diagnosed with any disability can be so isolating, so making those personal connections is so important. Plus, other parents give the best advice!
Also, know your state laws. Many states have passed Autism reform laws, which force insurance companies to pay for treatments like ABA. Also be sure to check out what your insurance company covers. We found out recently that ours began covering therapies, such as speech, for Autism Spectrum Disorders, which they never did before. Always have to keep on top of these things, as no one is going to send you a letter to let you know!

8. We know that it is important to take care of ourselves to be  beneficial to our families. How do you make time for yourself and what  are somethings you do that are just for you? I rarely get time for myself. Once in a while I will go out with friends to dinner, but it is hard to get out since most nights we don’t get home until 7 or 8pm. Also, money is tight, so even when I do have time to escape, I might not have the funds to actually go anywhere. It is a struggle right now to make time for myself, and it shows. There are days when I think I am really about to go off the deep end. Social media is actually the one thing that has kept me from totally losing it at times. My Twitter friends are always there to listen to me rant, or when I just need a pick me up. Don’t underestimate the power of those friendships. Even if you don’t know someone personally, they really can be a great support.

9. What is the single most important post that you have written on your child’s illness? That is a hard one to answer. I tend to be very personal in my writing, so I am not exactly spreading information that is necessarily important to others. On the other hand, a lot of people have told me that they appreciate the honesty in my writing and how I don’t glaze over the bad. I am nothing if not real, even if that makes me seem like a Negative Nancy. I think it’s just important that people can relate to me, and know I am a real person with real struggles. I am not out to make money or become famous. Blogging isn’t my job. I am just a mom, trudging along, hoping to come out the other side with my sanity. So, I can’t really pin point one post I feel has been the most important. I guess that would really depend on my readers and what has spoken the most to each one of them, personally.

10. Where on the interwebz can my dear Ragers find you so they can steal your ideas learn from your wisdom? I blog at Living Life with a Side of Autism. I am also on Twitter @JenTroester and people can also follow me on Facebook.

Be sure to go show her some Rager love!

Mom’s IEP with The Drama Mama

Hi Ragers! For this edition of Mom’s IEP we’re going with an interview format. I am happy to be sharing some insight with you from my good friend and writing partner The Drama Mama.

How old was your daughter when you knew there was a medical issue and what was the deciding factor?

She was 7. When her brother was born, she turned into this different child. It is believed that his birth was the trigger. Looking back, and being wiser today, I think we saw signs at 4 and 5, when she started with the stealing and lying, the constant destruction of her room, etc.

I don’t really think there was one deciding factor. I think it was just the complete change in itself. We called an in-home counseling agency to come out and help, since I had reached the point where I was sadly ready to send her off to behavioral school. The first counselor deduced that she was simply a “willful child”, but she was replaced with a new counselor within a few weeks. This new counselor suspected ODD combined with ADHD, and that got the ball rolling for us.

Was your family supportive?

Yes and no. My mother was for the counseling, but against the final diagnosis. She did not support/believe that there was really anything wrong with her. My husband on the other hand was supportive of the diagnosis and the treatment, but against the in-home counseling. The tables have turned a little bit today, since I started a blog about the early pre-medication days about Jellybean’s behavior. Only those of us living with her saw the bad behavior……………………..so support was difficult to find.

The counseling has ended, and while my husband tries to be supportive, he isn’t always able to overlook some of the symptomatic behaviors that I have learned to. He doesn’t have the ability (yet) to pick his battles like I have, and the ones he does choose are often the ones I have learned to live with. This puts us at odds sometimes, but his willingness and openness goes a long way.

What habits or activities have you found help get your family through the day with minimum collateral damage?

We have a very loose routine. I know its supposed to be structured, but every time we try to follow a schedule here, it blows up in our faces. There’s consistency in knowing what is expected of her, whether she always does it or not, and I think that has gone a long way to keeping things at a minimum. We’ve also come to expect that between 6 and 8 there can be mania. I do my best to keep things normal, staying calm, and not giving in to her demands any differently than I would if she were not in a rage. Most of the time now, it only takes a simple phrase…go to your room until you are in a better mood. She usually comes out within a few moments, and most of the time with her attitude changed (and it tends to last). If it’s not quite where it needs to be, she retreats back to the safety of her room.
If we are not home, it’s a bit more challenging. If she is left to herself, she can usually pop out of it. The apology comes later in the form of “I don’t know why I was acting that way.”

I don’t like the behavior, but I do like the fact that she can finally, FINALLY, realize what she is doing, even if she doesn’t understand why.
(that’s not how it should be, but that’s the way it came out, LOL. I mean that she couldn’t even tell she was in whatever mood before, but she is able to now, even if it is later)

Where do you turn for resources and/or support for yourself?

Google is my best friend.
Once she started seeing a p-doc, and he realized that her correct dx was NOT ODD but rather a mood disorder, I spent weeks researching the internet trying to understand how to help her.

It was still hard though, because I don’t have any real life friends with other girls her age that I talk to on a regular basis to figure out what is normal tween behavior or symptomatic behavior. The more I researched, the more I understood. Then, I started blogging. I found Mommylebron’s support group and other ladies in the blogosphere that even if they weren’t experiencing the same, they understood. That alone went a long way in support.
The in-home counseling went a long way to helping me revise my thinking and parenting styles to develop a mostly working system, the ability to handle whatever she throws my way, and the patience to ride out the storm.

What is the biggest challenge presented by your daughter’s illness?

The biggest challenge by far is the disrespectful attitude. While her Queen of the World expectation and the inability to maintain her role as a child rather than an adult are certainly at the top of the list, the disrespect is by far the most challenging because she hasn’t quite figured out the filter yet. I am really hoping this will get better as we do more role play and she gets the opportunity to not only hear how it sounds but experience how her dad and I feel when she does it.

What advice do you have for other families in similar situations?

Never give up, never stop fighting, and know you are not alone. Find an agency that offers in-home counseling to help you deal, get support, and be a better parent. Try natural methods but don’t allow the stigma of society regarding medications prevent you from trying. I never thought I would ever put my child on medication, but after realizing nothing else worked, I succumbed. Now, I am glad I did. The results are amazing. I also realize that we got lucky that her p-doc found the right meds for her early.

~*~    ~*~    ~*~    ~*~    ~*~

Thank you Drama Mama for taking the time to answer our questions!

Want more Drama?

Read her blog.

Follow her on Twitter.

And stalk her on Facebook.

Much Love,

My Mom’s IEP Needs an IEP

I know that sounds redundant. But in everything you do that old adage “When you fail plan, you plan to fail.” applies. A blogging series is no exception. I think both my intended guest and myself blew us off forgot about today. When we scheduled it weeks ago neither of us considered this was Easter weekend. Oops.

I think the open format of write-whatever-you-want-and-call-it-an-IEP is intimidating for some and I really want to to steal your tricks learn what makes you a great special needs mama. So I’m going to come up with a list of questions and turn this into a interview type series.

So….what should I ask? If you have a great question leave it in the comments and I’ll add it to my list.

On a slightly unrelated note I have an award to bestow. As you all know I am real big on kicking stigma to the curb. Living with mental illness is difficult in and of itself. Feeling like you are shunned and stereotyped by society adds unneeded burden to one’s shoulders. The more we talk about the mental illness that effects our lives the more we shed light and add humanity to this issue. Real people, real problems. Not basement dwelling hunchbacks designing pipe bombs and eating jordan almonds.

And you know what’s amazing? Anyone can help wash away stigma. Old or young. Even if they’re young and living with mental illness themselves.

And do you know someone young with a mental illness who speaks up and tries to wash away stigma? I do.

When she’s not driving me crazy (no pun intended) or busy charming friends and family, LeBella is working on her blog, Silly-licious Princess. There she share’s her experiences, fictional stories, poetry, songs (written and sung) and artwork. She wants grownups to have an inside look at how a kiddo with bipolar disorder thinks and feels. She hopes that by sharing she will help her readers better understand the child in their life who is living with this. And so I pass on to my LeBella:

<img src=”http://i739.photobucket.com/albums/xx37/motherhoodumbrella/washing-machine.jpg” _mce_src=”http://i739.photobucket.com/albums/xx37/motherhoodumbrella/washing-machine.jpg” alt=”BWS tips button”/>

And last but not least, remember tomorrow is Bipolar Tuesday. The topic is open; come link up any post you have about raising a child with bipolar disorder.

Much love, Ragers!

Mom’s IEP: Melody of Life’s Twisted Stitch

I am beyond tickled to share today’s guest with my Ragers. Melody is near and dear to my heart; she is one my best bloggy friends and has been the source of tremendous support and motivation for My Kid’s Bipolar, Now What??. Today Mel gives us a peek into her day…

~*~    ~*~    ~*~    ~*~    ~*~

There are quite a few things that I do to make life easier, albeit I
have NOT figured it all out yet that is for sure.  I find that when I
get up at 5:30 am in order wake myself up before everyone else, then
the whole day goes better.  As for the kiddos, I give the meds while
still in bed as the sleep inertia that my mood disorder kiddos have in
the morning make it extraordinarily difficult to open their eyes and
move their bodies when they awake.  In fact, for my son, I frequently
have to lift him up out of bed and carry him to the bathroom.
Sometimes I come back out into the hall a few minutes later to find
him asleep on the floor.  In addition, In order to help them be sure
to get on the bus on time I pack the lunches and backpacks the night
before so they can grab and go.  Their breakfasts are quick too, like
cereal.

After school I insist that they each put their stuff from school into
their own “mailboxes” that are mounted to the wall just inside the
door, so that I can find their stuff when I am ready to get to it.
Then it is actually “down-time” (well ideally) as they NEED that space
to decompress or explode if you will.  Quite frequently it is high
management time for me when they come home as they are uber-irritable
on many a day.  I find, now that the weather is warmer it is easier to
send them out side to run/ ride/ play it out, while in the cold (which
they both hate), there is very little I have found to stem the tide of
agitation and aggression toward each other.  TV can do the trick, but
then I feel terribly guilty for using that for a management strategy,
lol.  When homework time comes, there is always the fight that there
has to be homework completed before computer time or any playmates or
whatever.  Somehow my oldest has not given to much struggle with
homework, but for my son it is like pulling teeth with no novocain.
There is ALWAYS bargaining and rewarding that comes into play for him
to get anything accomplished in regards to reading or writing.  It
makes me sad that he has such strong aversions to reading and writing;
I’m afraid he’s developing a sense of learned helplessness in that
regard.  Although the same level of aversion seems to exist around
bathing as well, lol yikes.  Anyhow, I use charts and graphs with
rewards to show him when he does do what it expected and sometimes
that seems to help.

As for behaviors, my oldest has the hardest time keeping her hurtful
words and aggressive responses to herself so I seriously need to
develop an IEP for myself to help my daughter with her behaviors so to
speak.  Sometimes she is quite a mystery to me as her responses are
frequently unpredictable and often extremely intense.  I struggle to
plan for them and I find determining appropriate and effective
consequences a challenge.  More often than not the consequences I give
her, she either doesn’t care or it just makes her insanely mad so
there is intense retaliation.  I worry about this a lot!  I wish I had
the answers for this one.

As for bed time, we have dinner at the same time every night, they
each have a chore they are expected to do, and by 8pm they are
expected to get ready for bed (jammies, teeth, and stories).  This has
been consistent for their entire lives, yet why oh why is it that they
still bawk, procrastinate, bargain, and whatnot?  Grrrrr. That
frustrates me to know end!  I have to console myself with the
understanding that all children do that and we are all in the same
boat with that.  I just wish it wasn’t so emotionally intense in my
home.
You can connect with Melody on Twitter and her blog.

~*~    ~*~    ~*~    ~*~    ~*~

Don’t forget about the giveaway!

Mom’s IEP: Amanda of Confessions from HouseholdSix

Last week I introduced my new series: Mom’s IEP because I really want to know what you gets you through the day. I often *accidentally* realize something just made my life easier and like rat in a maze I will repeat. But then I will kick myself, wondering, how did I never think of this before? Which leads me to believe you may just have some magic gem in your arsenal that I haven’t yet thought of! So, really, it’s quite selfish of me. I want your knowledge to make my life easier. And if y’all benefit along the way it’s gravy!

 

Now, first up on the gravy train is the lovely and dependable Amanda of   Confessions

from Household Six:

 

When I first read Mommylebron’s post about a Mom’s IEP to keep the chaos at bay, I thought, “Wait a minute. People have found a way to keep the chaos controlled?” Then I thought about it. My days are a very delicate balancing act of short and long term goals. 

I honestly don’t even know where to start. My 4yo is so OCD that I know there are so many little things I do in a day to accommodate him to avoid meltdowns that they’re second nature now.  Things I don’t even think of until someone else points it out as bring strange. 

Our 9yo is a little more flexible. His accommodations come more in the form of sensory items. Food textures and clothing bother him the most. I often cook dinner for the kids first, and my husband and I eat later after the kids go to bed. Our 9yo is really fairly flexible.

To keep my sanity, I MUST make sure our 4yo gets his meds every day. Otherwise, he’s the energizer bunny on meth. I also have my own quirks. Like I have to read the news and check my e-mail first thing or my day feels “off.” Other than that it’s a constant balance of trying to find time to do everything. I often find it hard to get household chores done because our kids need more of my attention. 

Long term goals, we’ve done things like eating less processed foods. That was really a necessity since I can’t have MSG and our older child can’t have red dye. I changed our son’s milk from soy to almond. I didn’t like the implications soy could have on a growing boy, but back when he was small, that was pretty much our only option besides cow milk. We’re also reducing stuff. We don’t need as much stuff in our house. This will help all of us in many ways. We continue what teachers and therapists are working on with the kids at home so that they’re immersed in the same ideas in all aspects of their lives. 

I know there is a lot more. There are just so many little nuances to having a smooth day with these boys that as I sit here and think of it all, it borders on insanity.

 

Amanda Griffiths

Amanda is a 31 year old stay at home mom to two boys ages 9 and 4. Her 9 year old was diagnosed with Asperger’s in January 2010 after 7 years fighting the medical system. Her 4 year old is diagnosed with moderate autism. Amanda blogs about the boys and their antics, the family’s health issues (autism, allergies, asthma, fibromyalgia, migraines, and food sensitivities), and life as an Army family. Amanda has been married to her wonderful soldier for 10 years.
Blog:http://www.confessionsfromhh6.com/
Twitter @householdsix
Confessions From HouseholdSix Facebook page

Would like to share your Mom’s IEP with my Ragers? Then hurry! Email me at mommylebron@yahoo.com, feel free to also send pics of kittens and boxes of Fruity Mentos.