Minnesota Autism Mom

My son is 2.5, so is he is obviously still a toddler and so I don’t know that I can technically call him a resistant eater yet.  I guess the reason I believe he is or will be classified as such is that his diet is so limited. It’s not the same story as children that are NT (neurotypical) that are picky. His willingness to try something new or that we know he likes is nearly impossible. It’s well beyond a power struggle. It’s very, very hard. I keep trying to give him what we eat, but he won’t even try. Our biggest issue is protein and then 2nd is veggies, but old favorites like yogurt and canned fruit (most days) will not be eaten either. He is almost completely surviving on candy, cereal bars, mac n cheese, and jello (and more recently I can get him to take in a corn dog). It’s fucking ridiculous and annoys me probably more than it should. I know he has ASD, I know there are sensory issues,  but he doesn’t also have to end up being as big as a house.

I was unable to attend a picky eaters conference at St Davids recently, but I did pick up the book “Just Take a Bite” and I HIGHLY recommend reading it if you are in my camp. I would recommend it to all parents because they discuss the culture issues surrounding food. These are significant and cannot be under estimated.

My favorite part of the book is something I just read on the Dr Sears/attachment parenting website. We can present food, we can present food that is healthy and give options, but we cannot make a person eat. I am always saying to myself..just eat, eat this, please try that…but, after reading this simple comment…I need to be done. It’s my job to make, prepare, present healthy foods. After that, it’s his choice on whether he wants to consume the food.

Of course, this is overly simplified. It’s so easy to say…I’ll just give him healthy food! Ok, wow, the end…that was easy! Because that is what I do and I only pick this battle 1 time per day and I fail. I feel success if he eats a majority of a corn dog, some fruit and yogurt. SAD. He used to LOVE all 3 of these things. It’s this or another round of mac n cheese and sadly we have had those days. He spits out anything with a case (pea, bean), he still chokes on the smallest chunks of meat because of the texture. I think I am going to have to just hide the tofu in stuff. I am not sure I have any more choices. Don’t bother offering him a chicken nugget. I am pretty sure he thinks they are the worst. The good news is that hamburgers are starting to take the center stage. We can add that to the list some days. Peanut/almond butter is not desired and will not be eaten with much interest.

At dinner time, I present, he refuses, we get down from the table, and he wanders into the pantry, demands to be lifted up so he can check out the other foods. Most days he might wait 5-30 mins before looking around for something else. We, of course, show him back to the table and reintroduce his dinner. He may pick at it, he may not…he will find his way back to the damn pantry. We do this over and over. The dinner is left until the next morning because we never know when we are “done”.

On the plus side, I have his ABA program working with me much better now in the regards to food. This is not just a struggle for me alone. Now when I put bits of meat and veggies in his daily mac n cheese, they realize that I need help getting him to eat this stuff. I thought I was going to really lose it, when they were basically giving him only the junk food. They wouldn’t even crack his apple sauce or whatever. That was when I was about to yank him out of the program. I just thought – if they don’t get it, then I need to find someone that does. Luckily they responded when I made very clear that it is not acceptable to give a child junk food all day in the sake of learning and ease of the therapists.

His oral motor delay may be causing some of the problems and I immediately could be more creative and will be in the future. I just can’t let my little man eat sugar all day. Because not only does he eat sugar all day, he then hardly brushes his teeth. I am going to worry about his first dentist visit in about 4 months…until then, I will just keep trying on that detail too.

Here are some helpful links. HIGHLY, highly recommend reading – Just Take a Bite – I know there are other books. I just haven’t gotten to them yet. Have you?

Picky Eaters (discusses the book in more detail)

Sort of the same thing – Picky Eaters

About.com

(I will look for more as I have time)

Parent Resource Groups for Parents of Children with Challenging Behaviors

The group will enable support and networking, as well as offer educational resources on topics that the group selects.  In February’s meeting we will present on “Taking the Maze out of Funding!”

Meeting monthly on the third Thursday

Next Meeting

Thursday February 18, 2010

6:00-8:00

(Dinner provided)

Elk River YMCA

Community Room B

On-site child care is available for children ages 6 weeks-10 years.

It is free for members and $5 per child for non-members.

Questions and to RSVP please contact:

Paula Minske -  763-241-2656 or paula.minske@co.sherburne.mn.us

Sue Schmieg –  763.633.0894 or smithspan@izoom.net

Co-sponsored by Sherburne County Social Services and Parents

In partnership with STARS for Children’s Mental Health and NAMI

I have never had time to look at any of these, but I saw one the other day and realized there is another form of reading I am missing out on (which might be ok). Here is a list of magazines I have found. Please add more if you know of any.

Spectrum

Autism Digest

Autism Society – The Advocate

Autism Spectrum Quarterly

Autism Perspective

Positively Autism (emagazine)

Autism File

My mind is spinning like a top. To work or not to work? Yes, that is the question. What are the long term/short term benefits? What are the pro’s and con’s? I have no idea where to send him in the afternoon. I am happy to say I just got a job offer. Of course, it was exactly at the same time I have my son’s PT walking thru the door. Hectic, hectic morning. Interviewing at a job, interviewing a daycare center… Is it realistic at all to think he would be ok at center? Is that just crazy? He really just needs a place to nap and play shortly while I work for a few hours. A part of me does not want to over think this. Another part of me thinks that is exactly what I need to do.

I guess this sort of feels like when I first had him. I remember he was shy of 3 months old and school was about to start again. I didn’t mind working, but I wasn’t sure about not being a SAHM. Even a stupid Oprah show talked about this topic. My head started to spin…what to do? Am I making the right decision? And then a young woman said that her mom worked and she is pretty sure she turned out just fine and would have been the same even if her mom would have stayed home. That’s when I thought about myself. My mom worked too. Were my successes and failures based on my mom’s 24 hour care? Um, no. I do not remember daycare. I do not remember babysitters.  I vaguely remember my grandma. These years are important, but they are not memorable if nothing traumatic happens.

So, my feelings of returning to work are feeling similar. Maybe pronounced because of his ASD, maybe not. It’s been a hellish 2009 and I just want 2010 to be better. A part of me is not ready to return to work and most likely has nothing to do with our child. I can admit that. I can admit that trying to find an ideal location for him to spend his hours in therapy and otherwise is making me absolutely koo-koo.

I also know that we will figure this out and it will be ok. No matter what the decision ends up being. So I will take a deep breath and just move forward with tomorrow.

I don’t know anything about this event in Elk River, but it is free. I can’t tell if they even want people to RSVP. I am considering attending if I can find a babysitter.

Speaking of, that is about all that is on my mind other than getting a job itself. Of course, I had to get sick again last night so that is sort of over shadowing my morning. I am wondering if I will get ill again.

I thought the “job” was going to call yesterday, but they didn’t. So now I am wondering if I got the job and how hard do I need to look for daycare?

I need help in the afternoon only. Do you know anyone?

…back to finances. We have been quite serious about looking for a lawyer to forgetting about the topic completely. The book “More than a Mom” does a nice job of explaining some financial issues with special needs kids. For us, I don’t know what to think. I mean, we can do the obvious stuff like a will. But, then when it comes to a trust…it gets a little hairy. He’s 2.5, I have no idea if he is college bound or not. I don’t know if it matters with our process or not.

Anyway, here are some articles to start reading if you have questions too.

About.com

Special Needs Trusts

5 Things to Consider

Attend either or both:
*Holland Center Open House from 1 pm-3pm.
*Core Treatments for Autism from 3pm-5pm.

Core Treatments for Autism:
Biomedical Intervention Part II. Focus on the core biomedical treatments of autism. The effectiveness and utilization of the treatments for our children. This is a follow up to Part I in …January, but it is not essential to have come to Part I to benefit from Part II.

GF/CF snacks will be provided by Miss Bee’s bakery. Holland is a GF/CF facility. Please do not bring any outside food.

For more information, please call 952-401-9359.

(taken from Facebook)

I woke up at 5:30 am. We have been having trouble getting our son to sleep to a decent hour. Because he is non-verbal and he currently appears to have low receptive skills; reasoning with him isn’t going to work. I hate how illness can throw off  a perfectly good system. Some days he is sleeping until 7, others he is not. I think we are getting there because despite waking up at 5:30, I waited and he fell right back to sleep. We had to wake him up. That feels like a victory!

But, as I awoke, I felt horrible. Stomach cramps, dry heaves, headache, extreme hunger… I used to get nauseous when I was really hungry. Is this what is happening? Or am I responding to this meeting I have in an hour? Probably both, but I felt like ass until about 5 mins ago. I am slowly coming out of the funk. It was horrible.

This job offer is interesting, but I am afraid by inviting me in, they are going to offer me some very low wage or something…and I will have to walk away. I was under the impression it paid quite well. Right now, I just don’t know.

In fact, I need to be getting ready for the day, rather than typing. I guess we’ll see…

This has weighed heavily on my mind lately. Never a clear answer. Constantly trying to think about what does MY son need and what exists. Even if you know your options (ABA/RDI/public preschool/private/daycare/etc)…then it’s a matter of openings. In the past week, I have had 2 places call with openings. I was on the waiting list since last April (so basically a year). The place my son goes is only half day and they had openings after 6 months.

Today I ran into this about.com article. Which might be a good place to start if you are in a similar situation. Once you know the options, then it becomes impossible to try to figure out what you pursue. But, if you are like me, you will just get on as many waiting lists as possible and more or less take the first one that calls.

Apart of the reason I started this blog, was to find others that are utilizing these PreK options so we can discuss our likes and dislikes of the programs. I only think we can make intelligent choices if we talk, rather than always talking to the provider.

Another conversation I have had lately with friends with children entering Kindergarten is the similar transition to K. Again, about.com has written up a great article to possibly help w/ this transition as well.

I also found these links doing a quick Google search.

http://www.education.com/reference/article/Ref_Living_Autism_Moving/

http://www.iidc.indiana.edu/irca/education/Kindergarten.html

http://en.allexperts.com/q/Autism-1010/Transitioning-Kindergarten.htm

http://www.questia.com/googleScholar.qst;jsessionid=Ln6hwn7RR26P3Y3Vh12QY8rLjTnRVrS7Fz8Vmp85zjp2GyLz2mYX!2144018255!1093128662?docId=5002101290

http://www.brighthub.com/education/special/articles/22295.aspx

http://www.post-gazette.com/pg/07234/811045-114.stm