I still don't understand- ASD.

[laurata]

Background:
We initially suspected language delays when ds was not yet 2, but because it (his language development) had been borderline and he was a "walker," our dr took a "wait and see" attitude. I was going to ask for referrals when ds turned 3, but then he spoke his first sentence (making me think he was going to have the fabled "language explosion"), we moved out of state, and I had a baby. It was another 6+ months before I finally faced the face that he was NOT, in fact, talking spontaneously, and much of the time, he didn't understand me. Not at the level of an almost 4yo for sure. People constantly assumed he was a late talker AND a year younger than he was.

After some prodding from our new ped, I got him in to childfind. Who said to come back "in a few months." He "wouldn't cooperate." (He did not understand what they were asking of him.) He did have some speech by that time, but was way behind. He was almost 4 1/2 by the time we got back in with them and found out he was very significantly delayed, and not just in speech. We also got a referral to Children's, but there was a wait, and then another 6 month wait, and then more waiting to get an Autism Disorder diagnosis. In that year of waiting, I realized that was probably what the diagnosis would be.

My Issue:
Here's my issue though- I still don't get it. I know he is "mildly affected." I get that he qualifies for special services through the school district, and (we think) our insurance company. But none of that helps ME! How do I cope on a day to day basis? How do I learn to set up schedules, and make picture schedules? How do I ever sit down and engage with him when he is nothing like any child I have ever played with. Yes, the dev preschool and speech therapy have helped him with talking, but I don't get it!

I want to play with him. I feel lost. I can't really play with him, only beside. I tried to do a simple craft project with him, thinking he would like it. He went crazy, wanting to run around the room with tissue paper and shrieking with glee. His 2yo sister started screaming in terror, and I couldn't get him to behave safely with scissors, (3 word, one step instruction) so we had to end that little adventure.

I started bawling and hyperventilating shortly thereafter. School has been out less than a week and I am already counting down the days until it starts back up. I feel like a failure as a mother. I keep asking for help, but I feel like no one has practical help to offer. The Autism Clinic gave me a book of "resources," but its mostly therapists, etc. They also said things like "Your OT or ST can give you guidance on that." We don't have an OT (yet) and I only met the school's ST once or twice at meetings. Ds will have someone new next year and we don't know who.

I feel totally overwhelmed. Can someone break this down for me? I'm terrified that I'm in over my head and its never, ever going to get easier. I'm afraid I'm going to fail all of my kids because I'm such a flake.

I do see a therapist regularly, and have been trying to add in exercise. Ds and I both do a GF diet, but not a bunch of biomedical stuff. Any books, websites, past discussions welcome, but also, breaking it down for me would be great too.

[Linda on the move]

A book I really like is "Quirky Kids" by Klass. It's isn't about profound autism, but about PDD-NOS, asperger's and other "quirky" disorders. It is a parent to parent kind of book, and reading it makes me feel better.

It does get easier, and then sometimes it gets harder, and then easier. It sometimes seems like two steps forward, one step back. And sometimes we go for really long stretches where my DD seems darn near normal, and then we go through patches were everything falls apart and seem to be starting over from square one.

Part of having a special needs child is making peace with the unknown.

But for this summer, you guys need a plan. I take it he doesn't go back to school until fall (next summer you can advocate for summer school).

I wonder what would happen if you did tissue paper again. I know it was overwhelming, but may be with repeat exposure he could calm down. New things take more getting used to with a child with ASD.

What happens if you go to a play ground? How does he do with play dough?

Our first picture schedules were for morning routine and evening routine. They just listed a few steps and had a simple drawing for each. For example:

1. put on jammies
2. brush teeth
3. read a book
4. go to sleep

I'm a bit of a flake myself. I often wonder why god didn't give my little girl to a different mother, one who has her sh*t together. But for some reason, she and I have each other, and we are doing the best we can.

[Lilypie32]

OMG I totally feel like you do with regard to wishing summer was over already. I feel like a horrible mother. I work from home more than full time (I'm a single mom and dad does not have visitation) and I have no one to watch my child so he has NO routine whatsoever and doing activities with him is impossible because of his autism and ADHD. He cannot sit still long enough to do a simple, fun craft and after the awful day we had today I wish someone would put me out of MY misery.

[BookGoddess]

These are my favorite books for ASD stuff....

Playing, Laughing and Learning with Children on the Autism Spectrum: A Practical Resource of Play Ideas for Parents and Carers by Julia Moor
http://www.amazon.com/Playing-Laughi...6751543&sr=8-1

Ten Things Every Child with Autism Wishes You Knew
http://www.amazon.com/Things-Every-C...ref=pd_sim_b_3

Cutting-Edge Therapies for Autism 2010-2011
http://www.amazon.com/Cutting-Edge-T...ef=pd_sim_b_28


Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders by Dr. Kenneth Bock
http://www.amazon.com/Healing-New-Ch...ref=pd_sim_b_2

I would encourage you to look at the biomedical information. Check out Dr. Bock's book. Biomedicine won't replace therapies, but it will help your child to feel better, focus better, sleep better, learn more easily...

[BookGoddess]

Are you willing to share your location (state)? If so, maybe we can find some local ASD support groups for you. I've found other parents are fantastic sources for local ASD information.

[laurata]

Originally Posted by Linda on the move

"Quirky Kids" by Klass.

<snip>
But for this summer, you guys need a plan. I take it he doesn't go back to school until fall (next summer you can advocate for summer school).

I wonder what would happen if you did tissue paper again. I know it was overwhelming, but may be with repeat exposure he could calm down. New things take more getting used to with a child with ASD.

What happens if you go to a play ground? How does he do with play dough?

I'll check out the book, thanks. I think you might be right, its the novelty of tissue paper activity. I essentially have to build a routine from scratch here, because my older (homeschooled) girls spend most of there time in unstructured reading, computer learning, and free play. I will start working on some more activities. He plays independently on the playground, mostly in the sand. He loves play clay. He is definitely a sensory seeker.

Originally Posted by Lilypie32

OMG I totally feel like you do with regard to wishing summer was over already.

Well, at least we aren't alone in this. I'm brainstorming ideas, and will post them if and when they are coherent.

Originally Posted by BookGoddess

Are you willing to share your location (state)? If so, maybe we can find some local ASD support groups for you. I've found other parents are fantastic sources for local ASD information.

BookGoddess, I will look for those books, thank you. As for my location, I am about 30 minutes north of seattle. I do know of a few resources, and have attended a support group here and there. Unfortunately, the one group I attended been extremely hard for me to get to. Its only once a month, and scheduling conflicts always seem to come up. With 4 kids and no childcare except dh, its tough to make everything happen that needs to. The other group in my county I contacted, but never heard back from.

[LynnS6]

Many kids on the autism spectrum have sensory issues, and these book have good ideas for activities:

The Out of Sync Child has Fun
Raising a Sensory Smart Child

It sounds like the diagnosis is still pretty new, so you're still processing a lot. A decent place to start is the Floortime approach: Engaging Autism. I think a number of parents have used either this or RDI (Relationship Development Intervention). My understanding is that there's a fair amount of training needed for RDI, and I don't know about the Floortime approach.

[Linda on the move]

Originally Posted by laurata

my older (homeschooled) girls spend most of there time in unstructured reading, computer learning, and free play. I will start working on some more activities. He plays independently on the playground, mostly in the sand. He loves play clay. He is definitely a sensory seeker.

a daily routine, but a simple one, might be VERY helpful. For example,

1. Eat breakfast
2. Get dressed for day
3. go to park/playground
4. down town at home
5. lunch
6. play with playdough

etc.

At that age, my DD's life really revolved around her sensory issues.

My DD does much better with some structure than with no structure.

[mom2mygirls]

hugs i know how you feel I have three of my four kids who have autism it does get easier as time goes on my six year old daughter has it the worst. what i have learned to do is just talk to her like i do the others.

[kme]

I agree with previous posters about a simple schedule that may be more of a help for you than for your son - it breaks down the day and everyone knows what is coming "next". I used to make a schedule in the summer like every Monday we went to the park, every Tuesday we went to McDonald's play area, every Wednesday we went to the pool, etc.
So you would have a loose schedule like:
Breakfast
Get Dressed
Daily Activity (park, pool, etc)
Come home - small amount of free time
Lunch
Errands
Activity from Out of Sync Child Has Fun/Floortime/RDI
Snack
TV time
Clean up play area
Dinner
etc


I used to make schedules like this that were flexible. If something else came up, it was OK. I have 2 kids (one with ADHD and one with SPD) who could NOT entertain themselves as young children. They would basically run around the house making a huge mess and not really engage with anything without a lot of structure and guidance.

Definitely check out Greenspan's book "Engaging Autism" as a PP suggested. It will explain Floortime which involves playing with children with ASD. The activities in The Out of Sync Child Has Fun are also helpful.

I feel your pain. There IS a difference - I have two NT kids and then the ones with ADHD and SPD and I always felt like everything was twice as difficult (at least) and I wasn't getting anywhere with them. I used to dread summer. Last year I signed my SPD son up for a special needs summer camp. If you can afford it, that might be something to think about for next summer. They divided them up by diagnosis and severity and my son had a good experience.

Hugs.

[laurata]

Thanks ladies, all the responses are very helpful! I feel much more hopeful and together today. Yes, its a challenge, but one I am glad to undertake for my amazing kids!

We do have the start of a morning routine established, and bedtime.

Morning
1. Throw Away Pull-Up
2. Go Potty
3. Eat Breakfast
4. Get dressed.
5. Used to be "Get on the Bus," but obviously I need to tweak.

Bedtime
1. Brush Teeth
2. Put on Pull-Up and PJs
3. Read Fly Guy (his fav bedtime story)
4. Hugs and Kisses
5. Lights Out!

I'm thinking of getting some pictures for a picture schedule together for our established routines. I also want to add in activities that I know he enjoys, such as jumping, texture box, painting, cutting and gluing, play dough, and pool time. One step at a time, right?

[Kristine233]

Ditto what everyone said, plus I'd see if there are any Autism specific support groups in your area.

Its sad, you geta DX and no one tells you what to do next. You get the run around and it SUCKs and you end up second guessing everything. I keep saying I'm going to write a book on what to do AFTER you get the DX, but I haven't gotten around to it yet, lol.
(the last book I decided to write is still sitting unfished, all the resources and materials stacked in 3 rubbermade totes in my office, lmao.)

[sbgrace]

Floortime approaches (I got books and self taught) were the best thing for helping me learn how to engage my son in play (and relationship really) with us. We do RDI now and it's a wonderful approach but therapist involved to more expensive. Insurance does cover ours.

[AnalogWife]

This has been a valuable thread, thanks for sharing!

[laurata]

I wanted to post again to say (again) Thank You! for your support and encouragement. I wont say things are great, but I *think* it will be getting easier as we settle into a routine.

We did the tissue paper activity again, and it went better. We also made gf play dough, and that went pretty well. Some sibling squabbling, but not too bad. In addition, we have done "bubble time" and "painting time" with a special point of working through the transition trauma.

Speech therapy is scheduled. Still waiting to heard about OT. I placed holds on several books today. I sure do love my little guy, but I am definitely challenged here!

[EMAID]

*Hugs* I'm new around here, but I know exactly what you're talking about, because I went through it too. I think we must live in the same area. My ASD daughter was diagnosed shortly after she turned 3 (at Childrens), and now she is 6 1/2 and in a regular kindergarten class. She's still very different and has plenty of issues, but she is a pleasure to be around, fun to play with, has friends, etc. I can't guarantee it will be the same for you, of course, but I never would have thought I'd be feeling this positive about her ASD when she was first diagnosed.

All the advice you've been given is great. All I can really add is that getting used to this is a process. It's OK to grieve that you don't have the child you thought you would. For me, it has been a big opportunity to become a more flexible, trusting, accepting, and open-minded person. I know that doesn't help you in dealing with this on a day to day basis right now, but it will get better and easier, especially once you're plugged into a consistent, working school/therapy plan. It sounds like up until now he hasn't gotten anything with much consistency yet, and you might have to just stick it out and give it some time to help him. One thing that did help me when I was where you are is to tell myself that the label means nothing. The label, whatever it is, is nothing more than a word on a piece of paper, and it's best used as a tool to help the child get the services/therapies he needs. Take the word away, and you have the same child you did before you knew any better. He may need a lot of help but in some way he has a very unique contribution to make to the world, and his weaknesses (and strengths) will be a part of that.

Hope that helps.

[SquishyKitty]

DS has PDD/NOS, and at that age, he really liked knowing what was coming. Have him pick a book for bedtime at the start of the day. Have him pick a special activity for after lunch, small things like that.

Give him lots of time to transition from one activity to another, "DS, we are going to start putting stuff away in XX minutes" and set a timer. Give him reminders every couple of minutes. He may be resistant at first, but eventually he'll fall into a routine, as long as you stick to it.

DS had the hardest time with transitions. They made a picture chart so he knew what was coming next, and always made sure to give him plenty of time and notice to transition easily. Even now, at 9, I give him warnings and reminders and he's so much happier and easygoing when I say things like "Next time you can save your game, do so and then turn it off" instead of "Turn off the game now!". I find it takes a little more forethought on my part, but as he's gotten older, he's outgrown a lot of his sensory and transitional issues, so it's gotten easier to go with the flow.

I also made sure to always give him a safe outlet for his sensory issues. Leaf crunching, soft cloth, stuff like that. He used to grab me and hold me tight and slam his head into my stomach (I would grab him and just squeeze him really tightly when he did that, because he needed it and it HURT me lol), and that was when he was at his most stressed, but luckily he's outgrown that.