Minnesota Autism Mom

The NW SPARK ASD Parent Network meets all year long!  For our summer schedule, we will continue to meet each 1st Wednesday of the month. This month we will have regular discussion time, so come with your topics related to current joys, concerns and questions.  It will be a nice opportunity to get caught up on what’s new with families and get to know new families to the group as well.  Please note that childcare is not provided at this time.

Wed, June 2, 2010
7:00 - 9:00pm
Handke Family Center, 1170 Main Street, Elk River

Here’s the Facebook link - http://www.facebook.com/reqs.php#!/pages/MNAutismMom/113960475292241?ref=ts – you might prefer that over the RSS thingy.

I have been quiet as I sometimes do not want to do research and thinking about ASD. This blog is teetering on too much ASD for one mommy. Or maybe this will prove to be a winter activity as I am quite interested in gardening right now.

A quick update, my son is a rock star. He slowly adds new skills to his list. His babbling is thru the roof, yet no real words yet. His gross motor skills like walking down the stairs with no help is a huge leap of development. His matching skills are amazing.

My concerning questions – are sleep issues and keeping his glasses on. He has suddenly developed a strong dislike of wearing them and moving to the big boy bed has a long list of issues (that I am not about to type up). Sigh.

Today I am going to a presentation about wills/trusts/etc. We need to resolve this topic. I am tired of thinking about it. I hope it’s full of good info because it’s a whole 3 hours. Eating up my afternoon.

There is another presentation in Wayzata next week. If this one sucks, I’ll go to that one too. Feel free to send me info if you have gone thru this process and found a good adviser/attorney. It would be nice just to have a list of options for others.

I hate that cry. I hate the cry of the beginning of the night. Where he is trying to fall asleep, I mean he is crying out to get out of his crib. HATE IT. But, we have to let him cry it out or he would never be put to bed.

Anyway, I just read this. A blog entry about the new show, Parenthood. Just wondering if anyone caught the first show and if they thought the show did a good job with ASD or not. I only caught the ending and looked like your typical night time soap opera and I wasn’t so excited about it after seeing those last 5 mins. Now I might pull it up on OnDemand, if it’s on there.

On another very different note, I got this email today…if you didn’t get it 0 Here it is. I hope you write to your rep because while you may not use secondary insurance, I think it would be a real shame for this resource to disappear because no one could write a note and fight a tiny bit for this.

EMAIL MESSAGE:

You may know that MCHA is a health insurance plan that is covered by the state of Minnesota for hard-to-insure children and adults.  Many of our families have started opting for this coverage instead of TEFRA, because it can be cheaper than TEFRA.  However, there is a bill in front of the Minnesota legislature to restrict your access to MCHA.  See what you can do below.

From: “Autism Advocacy and Law Center, LLC” <info@autismlawcenter.com>

If you are interested in a half day therapy program for your PreK child (with ASD), you may want to go to their open house. I am very impressed with their warmth and facilities, but have never sent my child there for anything. Have you? Would love to hear about your experiences. Open House is on March 15th.

A heavily debate topic in our house is how much fun is it to take a 2.5 year old on vacation? My answer – not much. And with that I made the very hard to decision to not take up an offer to have a mostly paid vacation by my MIL this year to Naples, FL. So now, on Monday AM, my dad will drive hubby to the airport, where he will go visit his mother and step-dad without his wife and son. This weighs heavy on his heart. Making him feel alone and making me sad in return.

We simply do not see eye-to-eye on this topic. My SIL told me about a year ago that they were able to successful travel with a 2 year old. Is that because the 2 year old could talk? Had receptive language skills? Or does it not matter? My son has become very active. When he is happy and proud of himself he hold on to something and hops up and down. We took him to MOA on Sunday and he literally ran the entire time (with the exception of stopping to look at the carnival part and to visit a water fountain or 2). He is so busy right now, I can’t imagine trying to take him a 4 hour car ride or worst yet a 4 hour flight.

So I said no to the trip and now all of the feelings that were so hard to make about to go or not go are being rehashed as the trip is less than a week away. I have heard some pretty horrible stories of taking children with ASD on flights. I wonder, are there good stories? Or do they always end up being a bad decision? When can you take your child with ASD on vacation and it goes pretty well? Or heck, really well?

Last night, we were ALREADY! discussing the idea of him going next year. When he’s 3.5? Will he be talking? Less active? I don’t know. Again, 3.5 isn’t like drastically different from 2.5. Is it still too soon? I know we will have to take a wait-and-see approach to this and every other aspect of our lives, but my gut tells me no. He will be too young or at least developmentally I am concerned he will be too young. And again, yes, I know let’s see where he’s at this fall before really giving this some heavy consideration.

Anyway, a few months ago I found the following holiday trip going advice (for ASD) and thought I would share here. (I can’t give the writer credit because I have no idea where I got it from, but I better go find out now…) Here it is -

Tip: Disney World and many theme parks have special passes or wristbands for families whose children have disabilities, including autism. The passes allow your family entrance at the front of every entry gate, bypassing long lines, which are a huge source of distress. Call in advance and ask for special-guest relations. Trisha Kayden, who recently took her 9-year-old daughter to Disney World, says, “Getting to go first on everything is the only perk to autism!”

“For a young child, a very family-friendly theme park can be an excellent choice,” says Dr. Sandra Harris, executive director of Rutgers University’s Douglass Developmental Disabilities Center. “You can stay in one hotel for the whole trip. They are often very accommodating to families of children who have a disability and tend to be forgiving of tantrums, anxiety and other behaviors that many young children display.” As for loud theme park noises (sensory issues are common to kids with autism), take earplugs or headphones to mute the sound or visit during off-peak weeks, when crowds are smaller.

Tip: From airport security to boredom on the flight, plane travel can be a nightmare. With security, do a practice run. Marcy Mullins called her local airport in Cincinnati and explained that her 6-year-old son Marcel had never flown before. In an airport first, airport personnel allowed Marcy and her son to simulate what would happen when he went through security, step by step. The Columbus airport was similarly accommodating. If you can’t do a practice run, at the very least, alert security about your child’s issues.

Once you’re on the plane, have a plan to pass the time. “On our last excursion to Asia (my husband was there already) with three kids under 8, including one with autism, I prepared like a neurotic woman on steroids,” says Megan Browne. “Packed in each child’s rolling suitcase I had prepared gifts wrapped in tissue paper and had enough for every hour on the plane for each kid. The gift included crayons, a new coloring book, Legos, PlayDough, a new DVD. They looked forward to each hour so they could open a new thing to play.” Also, request bulkhead seats in advance and explain why you need them, and take gum or hard candy, particularly if your child is nonverbal and can’t tell you his ears need popping.

Even with good prep, travel by airplane is just not feasible for some kids. “With the advent of heightened airport security, I can no longer fly with Morgan,” says Pam Homsher. “I can just picture them asking to take her shoes off after she’s waited in line for an hour. She has stellar hand-eye coordination and has killer aim with a Nike.”

Tip: “Be sure your child is wearing identification,” says Dr. Harris. “You can pin it to the back of his shirt or attach it to his shoelaces if he is the kind of child who won’t tolerate wearing it. Include the child’s name and diagnosis and your cell number and anything that a person might need to keep him safe and calm until you are reunited.” Also, carry a recent photo of your child to show police in case your he or she wanders off.

Tip: It sounds simple, but remember to tailor the vacation to your child’s interests. Christine Bakter took her two sons on the autism spectrum to the Outer Banks of North Carolina. “We loaded the trip with special-interest opportunities. Ben is fascinated with lighthouses. Alex with swimming, crocodiles and marine life and peppered in a few things that my husband and I wanted to do.” Then they used all the activities as incentives to get the kids to try new experiences: “First we try this, then we will go to the place you want to go.” Also, remember that more activities are not always better. “Days spent on the go may not be what your child wants,” says Dr. Harris. “To avoid meltdowns, limit the number of things you do each day and plan for plenty of downtime at the hotel.”

With the right planning, vacations can even become your friend. “Travel is the time where we feel most normal,” says Karla Newman. “The more severe of my twins obsesses about vacations and occasionally has a meltdown because we can’t go to China or Israel this week!”

My very first post w/ my very own domain name!!!

Right now, I am going to be anonymous, unless I otherwise feel it suits this blog to be more open about names.

I have been blogging since 2000 or earlier. I have had very public journals, to anonymous ones and even a locked journal on LiveJournal so I can say exactly what I really want. But… this blog…this is something new for me. I am not 100% where I am going with it. I just know I am excited to start a new blog specifically about my experiences here in MN with therapies, programs, relationships, milestones, media, milestones, etc. I am tired of having trouble finding information in regards to this subject matter. I want real opinions and I want to share mine too so I can help others like myself. Don’t get me wrong, there is plenty of info on ASD. Actually, maybe? too much. I hope I can help others by making this a place where I have already gathered a lot of the research together and that others will add to the discussion to make it comprehensive and interesting.

My son is 2.5 today. He is non-verbal, beautiful, curious, and attends only one therapy right now, which is a half day ABA program. I have worked with 3 school districts already and surprisingly a handful of private therapists in town. We have been involved with the school districts since our concerns around his first b-day.

Very, very recently I have given myself a reality check. It’s time to stop feeling sorry for us and this situation. We have many blessings. This may be very hard at times, but there have and will be just as many exciting, positive experiences too despite having a child with ASD.

I plan on going back into my LJ acct and pulling out older entries to give this blog some body and energy. Excuse me as I get this thing going.

Please comment below to say hello if you have gotten this far. I hope I can make this blog into something sooner than later!