Bipolar Tuesday: The Friend Factor

Before I jump into this week’s Bipolar Tuesday I want to thank Jen again for her Mom’s IEP Post. If you missed it pop over, we’ll wait.

If I had been writing this post a couple months ago it would have a much different tone. LeBella has not had a successful history of making and maintaining friendships. She has a chronic inability to read social ques and body language. Because of this she has constantly fallen on one side of the fence or the other; the bully or the bullied.

Over this past school year LeBella has been home schooled because she was simply not stable enough to attend school. She was also not stable enough to go out in public too much so we did not join any home schooling groups. Honestly, I feel like the break from the pressure of socializing was just what she needed.

And now the break is over.

LeBella has made several friends in the neighborhood, all slightly younger than herself. Over the last few weeks there have been water balloon fights, sleep overs and tea parties. I have watched my formerly friendless daughter whisper with delight, laugh at silly jokes and construct elaborate play scenarios.

There are downsides, little girls tend to squabble quite bit and I have to intervene before LeBella gets overly upset and behaves in a way she’ll later regret. And if they get mad and leave she cries like it is the end of the world making me wondering if its even worth it.

But I know it is. Having friends, no matter how few, is an important part of life.

Having friends has boosted her self-esteem so much and has made her a little more aware of how others perceive her behavior. She has learned how to make and adjust rules and how to share and consider ideas. She has put more effort in keeping her room clean and also began worrying about her personal appearance. Not in a bad way, she is now more inclined to make sure her hair is brushed, her face is clean and so on.

I am not yet comfortable enough to send her to other people’s houses without me, I still have to closely monitor her body language and the subtle ques that tell when she has had enough. I do keep an open door though. As long as she is up to her friends can come over to play in the yard or her room. I try to switch things up evey now and then.

We held an afternoon tea party where the girls got to work on table manners and crafts together. The water balloon fight was a little nerve wracking, at one time being hit by the balloons would have triggered a meltdown while the actual slinging would result in malicious glee. We’ve come a long way. I try to always keep that in mind

What about you, Ragers? Do you have tips and tricks on friendships you’d like to share? Do you have a particular memorable experience of your child making a new friend? Go write the post (or dust off the one you’ve already done) and come link up! The linky will be open all week so you can share your friendship stories.

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Much love,

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!

Metabolic Health in Adolescents with Mental Illness, Importance of Screening

This video was the keynote address given by Barbara Gracious, M.D. for the TrueChildWithin.org Pediatric Bipolar Disorder Conference held October 3, 2009. Dr. Gracious is a researcher and clinician at the University of Rochester Medical Center, Rochester, NY. Length 40 minutes. To view the entire video, please go to their free library at www.truechildwithin.org/Video_Library.html

Come back and tell me something you learned!

Bipolar Tuesday: From the Inside Looking Out

Hello, Ragers! Last week I challenged you to pick one of your child’s moods and to place yourself in their mind. What do you think you’d find there? Write the post from their point of view and come back to link up!

** I will be updating this post in a bit with my story.

<img src=”http://i739.photobucket.com/albums/xx37/motherhoodumbrella/bptuesday.jpg” alt=”Bipolar Tuesday” style=”border:none;” />

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.

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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,