Mom’s IEP: DS Walker

Hello Ragers! I am very happy to share today’s IEP with you! We are talking with DS Walker, author of Delightfully Different, and a sweet lady I am honored to call a friend. After reading this I hope you will go show her some Rager love!

1. First, tell us a little about your family dynamics and what special needs you have become an expert on.   

Our family consists of a teenager girl on the autism spectrum and an almost teenage son who is not on the spectrum.  My husband and I are both in the medical profession, yet it still took four years of struggles and getting the wrong diagnosis from more than one doctor before our daughter finally had a full workup; the results a diagnosis of Asperger’s Syndrome at age ten.

This actually brought understanding into our lives as I researched everything I could find on Asperger’s so I could help her learn to cope.   The fact that we initially listened to the doctors who misdiagnosed her caused her to have trust issues.  She was trying to deal with this and our family was starting to mend when she experienced severe bullying in middle school.  This caused a whole different set of issues and I then added the effects of bullying to my research.

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? 

 

Thankfully, this is not an issue for us anymore since she now is attending virtual school.  This issue affected us more when she was younger, so I learned a long time ago to get up early enough to have my cup of coffee and get myself dressed before I started trying to get her up.

I learned that she needed longer to actually get out of bed, so I had a system of calling her a half hour before she had to get up and every few minutes afterwards until she was able to get out of bed.  She also picked out her clothes and packed her backpack the night before which made the mornings go easier.

3. Schedules and routines or surprises and winging it. How do you get through the day?

She has been responsible for a while now, so scheduling is not a problem anymore for us unless something unexpected happens.  Then I just try to help her through it by giving her time to vent and blow off steam before we adjust to the change.  She is fifteen and we have been aware of her challenges for five years now which helps tremendously.  The only times this hasn’t worked is prior to the diagnosis and during the year of the bullying and again when she had to deal with a situation recently indirectly related to the bullying.

However, surprises are definitely something I try to avoid.  My husband threw me a surprise birthday party a few years ago, only he forgot to tell her.  Big mistake!  She did recover from it, but it was not fun. 

4. Has your family been supportive? How so, or if not how have you tried to help them understand? 

We have some members on both sides of our family who are very supportive and others who are trying to learn how to be more supportive.  I have given family members my novel, Delightfully Different and I also gave my in-laws a copy of Tony Attwood’s book The Complete Guide to Asperger’s Syndrome and I printed out a copy of information specifically geared toward grandparents that you can view at: http://www.myaspergerschild.com/2008/11/grandparents-of-aspergers-kids.html

I also talk to them about ways they can help and they really are trying.  Unfortunately, we also have some family members who seem to avoid us and others who think she is just shy.  We remind her that it their loss not hers, but they still have the power to hurt her.

5. Overall, what is the biggest challenge presented by your child’s diagnosis? How do you handle this?

The biggest challenge was getting the correct diagnosis in the first place, but after that the biggest challenge has been helping her overcome the bullying and being misunderstood for so long.  Of course, she does still have sensory challenges related to the diagnosis too.

6. What are the most wonderful qualities about your child that wish others could see more of?

She is very smart, has musical talents, and a good heart.  I am very proud to call her my daughter.

7. What resources would you recommend to other families in your position?

I recommend Tony Attwood’s book The Complete Guide to Asperger’s Syndrome and for those with a girl on the spectrum I also recommend Ruby Simone’s Aspergirls: Empowering Females With Asperger Syndrome and Rachel B. Cohen-Rottenberg’s The Uncharted Path: My Journey with Late-Diagnosed Autism.  In addition, I recommend that they explore blogs of those on the spectrum from Autism Blogs Directory to get further insights into their child along with support for themselves.  I also recommend that they contact their local Autism Society for resources in their area and that they ask questions and connect with others who have been where they are now.

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 try to make sure I have a few quiet minutes to myself in the morning to mentally prepare for my day.  I also take walks with my dogs and try to find time to read for fun not just for information although interacting with my blogging friends is fun too.

9. What is the single most important post that you have written on your child’s challenges?

I have to say the post I wrote for Danette’s Doors Series at S-O-S Research Blog is the most important post I have written about her challenges.  You can find it here http://sos-research-blog.com/02/a-door-to-understanding-bullying-and-teaching-kindness-and-tolerance/

10. Where on the interwebz can my dear Ragers find you so they can steal your ideas learn from your wisdom?

 

http://authordswalker.com

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Thank you so much for joining us today!

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: 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.

Out & About with Autism

The miniature brass bell above the door chimed daintily, announcing the newest patient joining us in the stuffy dentist office that afternoon. The small, sweet gust of fresh air was a welcome respite from the musk of too many bodies crammed into not enough space.  As I looked up I barely noticed the slight, doe-eyed brunette hiding amongst the folds of her mother’s vibrant and flowing skirt. That is until, in her attempt to wedge her petite frame between her mother’s stocky legs, she managed to topple her over. The mother quickly righted herself, smoothed her hair and skirt with fluttering hands and continued her hushed conversation with the receptionist as if nothing had happened. All of the sticky, fake leather upholstered chairs in the overcrowded room were occupied so she took a seat in one of the tiny plastic children’s chairs and attempted to entertain her little girl. The small girl hid her face behind wisps of brown bangs as she pushed the battle worn books aside with tiny hands and tossed the wooden puzzle pieces to the floor.  She fidgeted and whined incessantly, working herself up until her flushed face was slick with tears. She stretched and arched her back, pulling angrily from her mother’s grasp. She threw herself dramatically to the floor, thumping her fists furiously on the worn carpet.  All the parents in the room began exchanging dirty looks and refusing to look at the pair directly. I made eye contact and smiled, hoping she read my subtle message that I understood.

“Ma’am, maybe you should take her outside.” The receptionist suggested in that bored, monotonous voice of hers. I expected the frazzled mother to slink from the room with her little ball of fire in tow, or possibly to succumb to the tears I could see glistening in her eyes. I was very pleasantly surprised when she spoke up.

“My daughter is nonverbal autistic and this is a very traumatic situation for her. She has as much right to be here as anyone else. If I were to take her outside she would very likely runoff on me. She is much safer in here.” Her voice wafer, but she sat up straighter as she spoke, seeming to find confidence in her own words.

There was a bit of tension in the room as everyone held their collective breath. Everyone was waiting for someone else to challenge her. No one was going to push her. The little girl rubbed her face on the rough Berber carpet and continued to wail in the safety of the small room. For that I was relieved.

If you would lke to place an Avon order with proceeds benefiting children with bipolar disorder please read this post. And be sure to leave a comment there RSVPing for the Twitter party!

About.com is holding a contest right now recognization people and organizations who are raising their voices in the special needs community. You can show your support by voting for:

Hartley Steiner of Hartley’s Life with 3 Boys

Tracy Anglada author of Brandon and the Bipolar Bear

CABF the Child and Adolescent Bipolar Foundation

Thank you, Ragers, for all your kind words and support.

I love you all in a non-creepy way.

Sap Happy Sunday: Love Drop

Have you found a way, big or small, to make a difference? We are surrounded by infinate opportunities if we just take the time to see them! Last month I told you about Love Drop and their mission to help a family every month.

Get this….

“Last month the Love Drop Team raised over $2,500 and boxes after boxes of goods and items to help Jill and her family get through a hard time in their lives (homelessness & financial worries). We did this in 1 month. All 400+ people came together and gave a few bucks each to impact one family’s life. If you participated in this, THANK YOU. The final presentation can be seen here. (It’s pretty cool!)”

And, now for February there at it again. And I feel especially drawn to this because so many of my bloggy and Twitter friends are raising children with Autism. And also? We are looking at Aspergers as a possible diagnosis added to LeBella’s mix. Either way, I feel it.

“This month we start all over again and circle around 2 beautiful kids with severe autism — Ethan & Alex. Our goal is to raise $13,000 so we can get them a highly trained service dog. And if possible, two iPads so they can speak again (they can’t even say “I love you” to their mom — these iPads allow them to get their voice back).”

Ok, Ragers (that is sooo what I’m callin’ y’all!), are you ready to help? Here’s how:

1. Join the team – This is the best way to help out, and all it takes is $1.00.
2. Join our blogger network – Blog about our Love Drops each month like I am It’s easy, it’s rewarding, and it REALLY helps spread the word (which in turn helps our families). Love Drop will give you all the content you need.
3. Give a gift or provide a service – Gift cards (iTunes would be great!), two iPads (so we can help the boys speak again!), and anything else you think could help out.

Ok, Ragers, go make magic!

Related Articles

• Love Drop: Barn-Raising in the Digital Age (prweb.com)