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Interruptions

Fimage-Blog Interuptions

This weekend we had an engagement for our oldest daughter. It was a lovely affair with family, the bridal party and close friends. Of course, AHC reared its ugly head and Kathleen went into an episode an hour before the guests started to arrive. She never joined the party.

We decided to have Kathleen’s aide be present to take care of Kathleen so that I (because it is usually me she wants) could be free to meet my future son-in-laws family and just mingle with our guests. It is hard not to feel guilty that we are enjoying ourselves when she is stuck in her room. Many family members and her young cousin stayed for a time with her but it just wasn’t the same.

With Kathleen’s anxiety increasing, it is so hard to plan for these momentous events. No matter how we try to maintain normalcy and keep calm, we can’t control how she feels nor can we skip these precious moments.

Let’s continue to raise awareness, raise funds for research and work together to find a treatment for our kids so that they can participate and enjoy the events around them!

Share your experiences with us in the comments section.  How do you keep moving forward when AHC episodes come up?

Welcome to Holland

Fimage-Blog Holland

We have so many new parents who are struggling with the diagnosis of AHC.  No matter how much we tell ourselves that we are happy to put a name to what our children are suffering from, it is the unknown journey that we are about to travel that has us scared and terrified.  I was given this poem in 1994 by another AHC parent.  It was a time when I was having trouble coping with the uncertainty of how our lives had changed and the ups and downs of having a child with AHC.  My daughter was four years old.

WELCOME TO HOLLAND  by  Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

I can tell you first hand that while my daughter’s diagnosis at ten months sent us reeling, she was a blessing and a joy and has far surpassed anything we could ever hope for her. On the good days and the bad days, we celebrate the accomplishments she achieves everyday!

Wine Women and Shoes was a success!

Featured-Blog WWSSuccess

We are pleased to announce that our event ‘Wine Women and Shoes benefiting the Alternating Hemiplegia of Childhood’ was a huge success. Because of the support and generosity of our sponsors, donors and guests,

we raised over $80,000.00  for research!  

Look for the full summary and additional photo’s in the June Newsletter this week!

Date Night

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My mother-in-law always preached the importance of time with your spouse and made sure that my husband Mark and I went out every couple of months.  It was hard to get everything in place, be sure that all the phone numbers were listed and not feel guilty for going out and leaving the kids at home.
Once we got out, it was hard to unwind and not talk about the kids.  I believe this is a normal parental reaction.  But by the end of the evening, we were somewhat relaxed and rejuvenated…especially me.   Arriving home, everyone was generally in bed and we were thankful.
However, the next day, there was hell to pay!  It seemed that our absence the night before was the catalyst for increased behavior and neediness.  We started to weigh whether it was worth it…and we always agreed that it was!
In 2013, we travelled to Italy for the 2nd Symposium on ATP1A3 in disease.  It was not only our 30th anniversary but it was the first time since Kathleen was born that we would be gone for more than two nights.  It was a terrifying decision to make.  How could we leave Kathleen for so long and what if the unthinkable happened?  We were blessed to have our daughter Stephanie, Kathleen’s caregiver, brother Greg and my parents to help with Kathleen.  We also left a note and a small gift for Kathleen for her to open and most importantly, we called her everyday!  The one day we didn’t call, was a total melt down for her.   Upon our return, we were presently surprised that the following days were uneventful.
Recently a parent told me that she was planning her 20th anniversary – in 2017!  For her, it would take the two years to decide where to go, did she have the support system in place and would her child be ok.  Like us, traveling far and the ‘what if’ is the first thing we think of…
Do you have the support system in place to take a vacation whether it is two days or ten days away from your AHC child?  Please join the conversation.

Caregivers

Fimage-Blog Caregivers
Whit with his caregiver Rich

Whit with his caregiver Rich

When Kathleen was little, I didn’t give much thought to having a caregiver.  Family helped whenever we needed someone to watch Kathleen.  We were also fortunate to have neighborhood babysitter right across the street and as soon as they were old enough, Kathleen’s sister and brother took over.  It was easy because everyone understood her language and her needs.

I was a stay at home mom until Kathleen entered 2nd grade.  Even then, I was home when Kathleen was home.  It wasn’t until she graduated from high school that we needed to find a caregiver.
Finding the right caregiver to watch our children is a difficult task.  When they are little, they are easier to carry, easier to handle and they are easier to distract.
But as they get older, frustrations begin to come through and behavior kicks in and it is a new situation on a daily basis.  They can throw things; break things, pull hair, and bite. Their strength is incredible and many times it takes two to move them away from their focus.  If you can see the tension starting to escalate, try and change the direction; move them to another room, change the subject, offer something they like.  Sometimes that can defuse the situation…sometimes not.
Sunna with Caregiver

Sunna with her Caregiver having fun

Our first caregiver was a young woman who had been Kathleen’s aide in high school.  When she left after two years, I tried several different avenues and ended up on the national website for caregivers.  I wrote down everything about Kathleen – good and bad.   I had many responses, talked by phone and then met in person.  It didn’t take long to find the right person but then she didn’t stay long either and we were again searching.  This time I ended up at an agency.  We went through several different women, trying to find the right fit.  After a few weeks, we ended up with a wonderful woman who stayed for a year.  When she decided to moved on, the agency sent replacements and it only took a about a week to find the right person.  So our previous caregiver trained the new one and we had a smooth transition.  We still have the same amazing, compassionate, wonderful aide today.

I have always spelled out all the different ways my daughter acts, for better or worse.  I make a list of all the ‘what if’ so that the caregiver is prepared.  The list includes what do to if the ‘what if’ happens.  I stress that not only does my daughter have to be safe but so does the caregiver.
Lisa with Caregiver2

Lisa with her caregiver taking Selfies

We have had several situations over the years….one’s I don’t like to think about or share but I have also come to understand that no matter how much I prepare my caregivers, I can’t think of everything and no one can predict how our child might feel at that moment.

I know that many of you have spoken of the behavior your child has exhibited and some of you are at your wit’s end.   Know that you are not alone…there are many of us who are experiencing the same thing as you and when you are in the midst of it, it can be daunting and devastating.  We are here for you!
Please share how you handle your child and prepare caregivers for behavior issues that may arise.  What type of resources do you use to find caregivers for your child?

ABLE Act

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Often families look to the foundation for advice or the latest information that they can’t put their hands on.

Last month, a parent asked the following questions: “I recently heard that in January the “ABLE” bill was passed that expands the federal tax code to allow “529” savings plans to include savings accounts for autistic persons. Do you know anything about this and if it is limited to autism? Is AHC considered a form of autism?” We are fortunate to have Meredith Schalick, Attorney, Law School Professor and AHC Mom, provide an answer to the question of the “ABLE” bill.  Check it out here.

As to the second question, to our knowledge, AHC is not a form of autism.

Let us know if you found this information helpful in the comments section below.

Welcome to our new and improved website!

Fimage-Blog WebsiteAnnounce

Through the hard work of volunteers within the foundation, our web presence has been updated to reflect a brighter, cleaner, and more streamlined identity.All of the great information previously hosted on our “blue site” has been transferred and reorganized to better serve the family support aspect of our mission.We have added information too!  Read More

Siblings – Part 1

As parents, we spend a lot of time dealing with our AHC children.  As a result, our other children may feel that their own needs have a lower priority to that of their AHC sibling.  In 2012, we offered for the first time a Sibling session. My son Greg (24) and daughter Stephanie (26) were the moderators.  Greg recently shared his insight, “Our group had about 15 participants with a range of ages from 5 to 26, and it was nice to have the view of siblings who have grown up with a brother or sister with AHC”.

“The beginning of the conversation was slow, but as the older siblings began to share some of the more ‘embarrassing feeling,’ the younger ones opened up. Stories varied, and included a few things that we can all most likely align with.”

“In fits of violence, the AHC sibling would display incredible strength and would not stop when asked.  It was almost as those when in a fit, the AHC sibling blacks out and does not remember anything they did.”

“There was a common feeling with those under 16 that their parents don’t love them as much as their sibling.”

“There was also a common feeling of embarrassment.  Those over 16 all mentioned that they used to have feelings of embarrassment when they were younger, but have started to understand what actually matters in life. Those under 16 were still in the realm of not wanting people to see their sibling having a fit, and were reluctant to invite friends over to the house.”

“After each topic or person spoke, we’d all discuss what we felt and the elder kids gave advice of how to handle things.  The biggest difficulty was passing along that their parents do love them as much.”

Have you ever heard your AHC siblings express the feeling mentioned above?  What conversations have you had that would help other parents?

Independence

I hope everyone enjoyed Independence Day.  Independence… a word we take for granted on so many levels.  As parents, our goal is to make our children as independent as possible – ALL of our children.  Of course, independence is relative in the special needs community and especially so in the AHC community.  I have always tried to nurture Kathleen’s independence by assigning her age-appropriate responsibilities.  I grew up with a sister who is developmentally delayed.  While my parents cut her slack, they treated her as “normal” as possible and there were always particular chores they expected of her.  As Kathleen grew up, I strived to do the same as my parents. Don’t just take it from me, your therapists – OT and PT, suggest “normal” tasks all the time.

Of course when we talk about responsibilities and chores among our AHC kids we are obviously referring to the part of the day when they are not having an episode.  When Kathleen is not episodic, I expect her to pick up her room, prepare her own snacks and get dressed on her own among other things.  I know we are programmed as parents to take care of our children and I too am guilty of “giving in” and treating my daughter as a Princess at times.  However, my family and I have always tried to keep an equal balance between helping our AHC child and encouraging our able Kathleen to do things on her own.

Independence can start with small tasks… picking up toys and putting them in a basket or pouring a snack into a bowl.  As they grow, continuing to introduce simple life skills will only enhance and increase your child’s independence.  Ask your child to be part of chores such as: emptying the dishwasher, setting or clearing the table and assisting with the laundry.  Most importantly, always present tasks ONE at a time until mastered.  This helps to nurture a sense of accomplishment and when the next task is introduced, it will hopefully be a positive and possibly exciting experience for your AHC kid.

I know we all struggle to find a balance between helping our children and asking them to do it on their own.  But, I think the best way to help your child is to teach them how to HELP themselves.

Do you assign particular responsibilities/tasks to your child?  What kinds of tasks?  If you have a little one or currently assist your child 24/7, what can you do moving forward to aid in their independence?

Welcome to AHC 365!

Welcome to AHC 365!  The title speaks for itself… we deal with the effects of AHC each and every day.

It has been a few days since everyone returned home and I hope your travels were uneventful.  As always, I reflect on the success of the family meeting and this meeting was truly amazing!!  I love reconnecting with families, meeting new families and I am always humbled by your presence. The Family meetings leave me feeling energized and always strengthen my commitment to the AHC Community.  I look forward to working with you, continuing to raise awareness and fundraising for research… WE WILL find a treatment and ultimately a cure for AHC.

Attending a family meeting brings forth many emotions:  the excitement of meeting others who understand,  a better knowledge of the disorder, perhaps apprehension of seeing other children with AHC, and perchance sadness and a fear of the future.  All of these emotions are normal and expressed by many.  One mom told me, “I feel so empowered – empowered to now return home and educate and better explain what AHC is to my family and friends”.

For those of you unable to join us, the videos will be available in the next few weeks.  There are several presentations that will not have videos available due to submission of work for publishing and another for copyright issues.  However, the videos will be made available at a later date and summaries will be provided.   Whether you attended or not,  you may have questions that were left unanswered so please feel free to contact any board member or myself with any questions, concerns or suggestions you may have.

Life has a way of taking over and as each day passes, our days together fade.  However, know that you belong to a greater family and our children and our desire for a treatment connect us.  We are a community, a team and together we have ONE MISSION.  END AHC!

Have a safe and Happy 4th of July!

Respectfully yours,

Lynn Egan