Parents and family members of children with autism

Hi. My name is Rachel and I was interested in starting a thread for parents and family members of children with autism. My oldest son, age 3 1/2 has autism, and I have long used this as my "excuse" for not taking care of my own health. I've shifted my thinking and am now focused on getting healthy so that I can be a better parent and have more energy to meet the unique demands of dealing with the challenges (and joys!!!) of raising an autistic child.

So, if you are a parent, sibling, grandparent, friend, whatever, who has a special person with autism in your life and you are interested in sharing with others, please reply and join in to this thread.

A little about my goals: SW 213, CW 196, GW 140

More about me: I am a school principal with a strong background in special education. I also teacher pre-service special education teachers at the university level. I think my perspective as an educator and a parent brings a unique element to my personal and professional roles. I have 2 sons, ages 3 1/2 and 2, a very wonderful husband, great friends, and supportive family (although none nearby). I enjoy scrapbooking, reading novels, and organizing my cabinets and drawers (weird, I know).

 

Hi!... Im Mariam - mom to a 6 yr old boy named Maximus who was diagnosed w/ autism back in 2004

we knew from the start something was not right and found early intervention and now is in a very good school so far his IEP has set goals and has surpassed them and setting new goals each time.

I started w/ the idea of being healthy and wanting to lose weight when my husband got notice that he will be deployed to Iraq in June 2008.

I thought how am I going to catch up to Max when he jets... (meaning run like hell to the corner) .... I said I have to get in shape, lose weight, get stronger for my three boys because I will be alone w/ three boys and a dog

SW: 180 CW 136 GW 130

now my goal is to continue strength training and my husband is amazed on how fast i lost by just counting calories

I used to beat myself up on thinking how I have to outlive my son b/c I dont know who will be there to take care of him if he does not progress further and be independent.

Little by little we are getting there..... its a whole different ball game ~ I used to be very angry as to why but Im ok now ... much better.. this is part of my life... and I am here to make sure things will be done and accomplished...

Short version of my story so far~....

Eric pooped in the potty yesterday...several times at his "request!!!"  He hadn't pooped since Saturday and we were getting really worried.  We figured that he has had such breakthroughs peeing this week that maybe he was holding back because he wasn't sure how to handle pooping in a toilet and he knows that he's supposed to keep his underwear dry.  Because it had been so long since he pooped, I gave him a Fiber One bar.  it was probably fiber overload for a preschooler, but it did the trick. 

This is a HUGE step for Eric...his first poop in the potty EVER.

Hooray for Eric !!

How you are you doing today?

I just put the boys to bed since hubby is out tonight.  Now I think it's time to release some energy out on the treadmill.  I had the best asparagus with dinner.  I roasted it with some spray olive oil, sea salt (just a timy bit) and Mrs. Dash, for about 12 minutes at 425.  it was phenomenal.

I recieved a reminder from our local children's hospital that my youngest has an appointment later this month.  I don't suspect the spectrum at all, but the doc is concerned about physical growth, muscle tone, and motor skills mostly.  At least I think that's all she is worried about.  We are seeing the same specialist who diagnosed Eric with Autism.  I'm still a bit nervous and the reminder in the mail has got me thinking about it.  I am fairly confident in the genetic component, but our boys are so very different.

I have the best babysitter ever!  My husband and I went out of town Saturday and Sunday and we had a sitter stay with the boys from 9am on Saturday until 5pm on Sunday.  I know here because she was a special ed teacher at the school where I used to be an assistant principal.  She's married, no kids, and in her late-twenties....tons of energy.  She and one of her friends took the boys to an easter egg hunt and craft activity/lunch event at her church (she asked me first) and the boys had a blast.  She also spent a great deal of time helping Eric with some speech/language...he knows "button" and she taught him "unbutton" same with zip/unzip and tie/untie.  It was a little extra surprise for us.  The kids spent tons of time outside in the sunshine.  She even drove them to a really cool park in a neighboring town.  We had left her keys to our second car with has a set of carseats.  She rocks!!!  And hubby and I were able to have a short, relaxing weekend away.

 

I saw my brother over spring break -- he's doing fantastic.  It's so, so, so wonderful that he actually as a diagnosis and is in therapy.  Apparently he's planning a poker and game party for some of his friends in his therapy group -- for a kid who has always been extremely awkward and unsocial, this is a great step.  His job seems to be going well, too. 

It's really amazing the difference that treatment makes.

I was in a car accident with my autistic son on March 18. No one was hurt as we weren't going very fast. It was kinda of funny...his response to the whole ordeal. He sat quietly in the car while we waited on police playing his gameboy. My hubby came by because he worked close by and I had an insurance card but not the one for my car and my state REQUIRES verification of insurance. Anyway, when hubby got there, he went over to entertain my kiddo. My kid said, "hey M momma trashed the truck (the car we hit). She had to call the police because she trashed the truck!"

I wasn't sure he had processed what was going on until I heard him telling my hubby all about it. From time to time, I am so lucky to get verification that he does absolutely know more than he tells me.

Thats funny how you at first found a reason not to care for yourself, because of having a child under the spectrum. Because that was MY reason for putting on back all of those lbs that I worked so hard to work off from a few years ago. Thats amazing you had a mind shift, I am wondering, what changed your way of thinking? My son has pddnos and is doing very well as he is in therapy and has been for a year. We hope to mainstream him by the time he is in grade 1, he just turned 4 a few days ago. It's very hard and challenging... I admit my biggest worry is that my son wouldn't be independent but I have been reassured since he is getting help now, he will be. But either way, in order for that also to happen I have to be healthy too. Thanks for posting this thread. 

Hi everyone, you should really check out the forums @  http://www.autism-pdd.net/forum/default.asp

I go there, I love it, it's been such a help for me, my name there is JalensMom.. It's a great resource for us, especially to the parents with newly diagnosed kids (like me)  Please note, Im just sharing this site as a resource for parents, Im not doing it in a malicious way, I want these moms and family members to get the support they might need... 

I have been stressing today because we are changing our autism professional. My last therapist is quitting to start her own family. So we were forced to change and as you all know .......change is hard sometimes. 

I have been so hungry all day. I am sure it isn't true hunger because I have eaten proper portions and proper nutrients today and stress tricks us into believing we are hungry so many times. After we see our new therapist tonight, we are planning on eating out....I am so hopeful that my diet won't be blown by eating right after a stressful session rather I am hoping the session goes much better than my plans for worst case scenario!

Do any of you do this? Stress out over changes that are forced upon our autistic kids?

Original Post by mir730:

Thats funny how you at first found a reason not to care for yourself, because of having a child under the spectrum. Because that was MY reason for putting on back all of those lbs that I worked so hard to work off from a few years ago. Thats amazing you had a mind shift, I am wondering, what changed your way of thinking? My son has pddnos and is doing very well as he is in therapy and has been for a year. We hope to mainstream him by the time he is in grade 1, he just turned 4 a few days ago. It's very hard and challenging... I admit my biggest worry is that my son wouldn't be independent but I have been reassured since he is getting help now, he will be. But either way, in order for that also to happen I have to be healthy too. Thanks for posting this thread. 

 Hmm...what changed my way of thinking?  It's really hard to answer that because I need to be very honest with myself.  Here goes...

1. My son loves being outdoors.  This is is one of the things that makes him happiest and can really calm him.  I was lazy and I hate being active and playing outside, so my husband always took him.  I would see them playing outside together and became jealous to a degree of the fun they were having.

2. The last time a photograph was taken of just me and Eric, Eric was 4 weeks old.  He will be 4 years old in July.  I felt "too fat" to have my photo taken, even though I knew it would be important.  Incidentally, there are zero photographs of me with my younger son who is 2 1/2 years old.  Shame on me. This summer, my husband, the boys, and I are going to have a family portrait taken.  I have also resolved that after June 1 to never, ever object to having my picture taken with my family. (This was probably the biggest impact on my mind-shift)

3. I saw how much of a difference it made for Eric when we actively played with him rather than just "supervised" him playing independently.  After trying to engage him in a couple of very active hours of play every evening after work, I was exhausted to the point of going to bed at 8:00 and basically drastically reducing any intimacy with my husband.  I was not fit enough to give Eric what he needs.

Bottom line...I was lazy.  The great news...I have lost 24 pounds as of this morning.  My energy is much better, I play with both boys outside daily, weather permitting, and I even let my mother-in-law take a photograph of me opening a gift the other day and I didn't whine once!

Do I love Eric more now?  No way.  I have always loved him tremendously.  I am just better preparing myself to be a more active, engaged, healthy parent.

Original Post by larienkoci:

I have been stressing today because we are changing our autism professional. My last therapist is quitting to start her own family. So we were forced to change and as you all know .......change is hard sometimes. 

I have been so hungry all day. I am sure it isn't true hunger because I have eaten proper portions and proper nutrients today and stress tricks us into believing we are hungry so many times. After we see our new therapist tonight, we are planning on eating out....I am so hopeful that my diet won't be blown by eating right after a stressful session rather I am hoping the session goes much better than my plans for worst case scenario!

Do any of you do this? Stress out over changes that are forced upon our autistic kids?

 We've been fortunate that it has been a while since this was an issue for us, but I remember when Eric had 3 different speech therapists in a span of 6 months.  I was so angry.  Grrr...

I am so happy to update that we had a great session Friday with the new therapist. I was stressing out over NOTHING! It went smooth and we had a good time. I my son will still have to transition to the new therapist but the initial visit was GOOD!

I was so happy this weekend. My child was actually role playing in pretend games that collaborated with my hubby and me! It is rare that we get true collaboration along with an imagined game...we actually got to pretend to be something we aren't with my kid following along. NO one was directing the imagined game! For us, this is a true big moment!

Autism bites but its not the end of the world. There are shards of typical childhood present.

I just wanted to pop in and ask if anyone has anything planned for Autism Awareness Month or World Autism Day.. I ordered some Autism awareness hoodies that I will be wearing all month and I also have a small handout to give out *if* people ask..

I ordered this from a site called cafepress.com, they  have some really nice clothes actually, they don't look tacky IMO..



I ordered this but with black sleeves, it has the logo on the back aswell.. 

http://www.cafepress.com/autismthings.1510324 75

and this one which I think is so adorable..

 http://www.cafepress.com/autismthings.2237905 24

I spend alot of time at the gym so I will get good use out of both of these for the month..

I am not planning on doing much. I hate advertising that my kid is autistic because I am paranoid and I think that will make him an easy target. I have looked and found that there are sex offenders living in my area and 3 were caught with kiddie porn. Therefore, I try my best to not let others know about the challenges we face because I don't want to put anymore risk on my kid...he has enough since he cannot talk well and may not know how to get in contact with me if something should happen.

I realize that I am in the paranoid minority here, but...that is who I am!

Wow, I can totally understand that!!!  I won't walk around announcing it but all they can do is assume if they don't ask which probably alot of ppl wont.. 

Our community has a 5K to raise money for Autism research.  Last year, a group of my husbands old fraternity buddies from college came to town and ran it together.  We didn't even know about it.  That actually made it more special.  They did the run in honor of Eric, but were quiet about it because they didn't do it for our appreciation or pride.  We found out 9 months later.  What terrific friends we have.

I am planning on doing something special for the teachers and aides in the autism classroom at my son's school...maybe send flowers or healthy baked goodies...and cards made by Eric with our help.

Hello everyone! I have some GREAT news!! I was so worried about changing to a new therapist but everything is going well. She called today saying that she was in process of scoring our assessment to figure out where to place my kiddo and here it is the best thing a parent of an autistic could hear from a professional: "I am having a hard time placing him because when I was watching the video of the assessment, he doesn't look autistic at all to me."

Good days! Indeed.

I have posted a few pictures of my kiddo if anyone is interested in meeting him.

That's great!  Thanks for sharing your terrific news.  I'm glad the new therapist is working out. 

We just had Eric's IEP meeting last Monday.  He's going to stay in the great program he's in next year.  After that' we'll be trying to figure out kindergarten.  I can't believe he'll be four in July!  Eric is really into Shrek right now.  He loves saying the work "donkey" with a Mike Myers scottish ogre accent over and over again.