Minnesota Autism Mom

It marks 1 week since we started the big boy bed. It is not going as well as the first 2 days. It’s not that he gets up. It’s just hard to skip naps, it’s even hard to get him to bed. The weekend did not help. My husband is going to have to realize we have to be home by 6:30, no later, no exceptions. In all fairness, I need to make sure this happens too.

This is the month of eval’s. It will play into me wanting to eat badly and feeling moppy and sad. Today was fine, but I did have to sit down and go over an eval for 3 year old services today. Tomorrow I am taking him to see a developmental ped. We haven’t seen her in a year. I don’t know what to expect. I am bringing a lot of questions.

I was supposed to do a sleep study too. But, that has been postponed because despite our lovely insurance. We would be paying most of it out of pocket. F-that. Hubby says the snoring can stay so he can keep his money!

In good news, unrelated to child. I am quite happy to be gardening again, though I haven’t cleared out weeds or done much. I guess I like the idea of it (kind of like reading and making art). I have so much fun stuff I want to do, there is never enough time in the day. I think I need to avoid the boob tube and this thing more. But, it’s hard for some reason for me. Sad, I know.

So off I go…before Hubby gets home and wants to talk about stuff.

Does anyone know how to teach your non-verbal toddler how to tell you they don’t want to be in their crib anymore (other than crying and screaming)?

Some days laying him down for night time or a nap goes so well that I don’t fully appreciate the beauty of just laying him down and walking away. Other days, most days, we play a game of me (or husband) going in every so often and laying him back down and saying good-night. This dance can just happen once or for 3-4 hours depending on the circumstances of the day. We know crying it out doesn’t result in sleep. It results in a very stressed out child and mom. So we watch the time, making sure we are not popping in too often. This is the only way we can get him to sleep most of the time.

In fact, right now, I think he might be saying “up”, but I am not really sure since I just went in there (again) to say good-night, take a nap. —and by the time I re-read this entry he is full blown crying—

The dance continues.

So much of what clouds my head is -when does ASD start and end? When are his behaviors just of a 2-year old? I don’t know because I am a first-time mom. And, of course, talk to anyone without a special needs child and they are quick to say “all children are like that”.  ….   Thanks, helpful.

And on a more serious note, all of this elongated baby-like ness that he is most of the time, really does not make me wanting to have more children. Hubby hesitantly brought up this topic last night knowing what a sensitive topic it is. Just another example of a topic we can’t agree on. Right now we are choosing to shelf it and that might be for a few years, but he is not doing a good job of shelving it. He craves his concept of the perfect family so badly that he doesn’t always consider the quiet pressure he puts back on me. Slightly leaning on me to say “yes, let’s have another”, but instead he is doing the opposite. Each time he hints or flat out admits that he wants more kids, I silently build a strong argument for the million and one reasons I never want to be pregnant, go in a labor, or potentially repeat these past 2+ years. I feel strong enough for my 2 boys right now, I don’t know if I want to be strong enough for anymore humans.

The truth is, even if a geneticist could tell me it’s a very good chance that we will not have another special needs child; I really hated pregnancy and labor was well…labor. If I was forced to make a decision at this time, I would either say adoption or no more. I don’t know if I will change my mind on this. I don’t know if time will ease my worried mind.

Don’t get me wrong (and I am sure I really don’t need to write this, but I will anyway)…I love these 2 people with all of my heart. They are my family. They have become parts of me. But, a dream to have 2 children has been severely altered by the real experience of actually having a child. For me, it’s one day at time…month, year. I can no longer see what the future looks like because my son has taught me that life is going to well…just that, life. I can’t see anymore children today, but maybe in a year, maybe 2 or 3, I will be a different mom again and I will embrace the idea of growing this family of ours. But, today, today I am happy how we are. I can’t see myself pregnant, in labor, and raising kid 2.  I am waiting for time to give me answers. Whatever those answers might be.

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!”