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.

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

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?

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?