Throwing Rocks in the Stream

There was a time when I doubted myself. Sure Beth loves to throw rocks in the stream, but, I thought, what good is this stimmy obsession? It was disconcerting to let her go so deep within herself at the stream when she was younger. Should I discontinue stream outings? She couldn’t really answer questions because she was so absorbed in throwing rocks. I wondered if I should worry about the flapping after each throw. Another problem was she kept taking swipes of water from the stream (she put her hand in the stream and then licked the water off) and there were health concerns. When the swiping became uncontrollable, we had to take a break from streaming until I figured out that chewing gum prevented her from sampling the filthy water. But we continued going after the gum discovery because it made her so happy.

I am no longer worried about our stream outings. Beth can answer questions even while throwing rocks now. She can point to things and is aware of her environment. She can absorb new information between the times she is doing her rock-throwing thing. She will pause to say cheese for pictures and I can work some other activities into the rock-throwing (e.g., feeding the ducks). Streaming relaxes her and makes her happy, and that is what the flapping is probably about.

We went to the stream yet again today, and I realized how much she is really learning now, and how far I have come as her parent and guide. What does she learn on a stream outing? Plenty…

I believe she is experimenting with sound when she throws the rocks. Listen.

I highlight language for Beth, such as prepositions, nouns, comparisons, actions. We work on following directions. I said these things today on our stream outing, and her concentration on my words was obvious: I threw a rock on the wall, your rock went in front of the wall, let’s go up on the wall, and now let’s throw rocks down off the wall. The big rocks make a low sound and the little rocks make a high sound. The ducks were eating by putting their heads under the water and look the duck is flying now. I have a thin rock that I skipping on top of the water (on the surface of the water). The big birds up there look like eagles. Let’s go on the wall, let’s go to the shore (where the land is, where the dirt is), and let’s go that way. The rock went far, oh that one didn’t go far it fell near us, that is a small rock, that is a big rock, get the clean rocks, and not those rocks because they are dirty. Stop and come back this way. Do you see the school bus? I hear the plane…where is the plane? Look a dump truck! Where is the duck? What color is the bird in the sky? Look at the stick behind you (she picks it up, laughs out loud, throws it). All the while, she is having a blast.

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Throwing rocks at the stream is also great for physical development. There was a time not too long ago she couldn’t crouch down, couldn’t hold something over her head, was unstable when walking on the rocks in the water, wouldn’t crouch and twist to get a rock. Now I see she can do so much more than she used to and it is amazing what playing in the stream has done for her.

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Yes. It is okay to play in the stream, throwing rocks over and over, and flapping after each throw. It is more than okay. It is exactly what she needs.

 

 

Yes, I Get Down Too.

On my blog, I try to focus on the positive as much as I can. I prefer to write about the good things or the solutions we have found. But the truth is I feel crappy lately. I am finding it hard to bounce back like usual. Let’s see, I wonder why I have been feeling this way. Maybe it has something to do with what has been going on the last few months…

  • 9 evaluations for Kindergarten.  It really, really sucked. Enough said.
  • All the statements about “self-stim” and “very low” this or that on the evaluations.  Yes, I knew it, but having it shoved in my face is not a picnic.
  • We pushed hard for inclusion, thought we had some inclusion put in place at the start of school, only to have the district back pedal on it.  I just signed the damn IEP anyway…fine, who knows, maybe a slow transition to typical K inclusion for parts of the day are best. We asked to meet 2 weeks after school starts to argue about it then, because it was clear the team just wanted to get on with their summer vacation. Anyway, Beth’s teacher has not been hired, and that probably matters more than the inclusion plan right now. Which brings me to the next stress point…
  • Talking to the professionals at the school did not make me feel better. I tried to explain my kid’s autism and her unique learning/visual scanning/motor planning issues to everyone during the eval process and when I toured the school. I got confused looks most of the time. The exception was the speech therapist, but I just learned she will not be at the school next year. Add to that, I have not met Beth’s teacher yet because she has not been hired. I will get to meet her the week before school starts. All I can do is pray that Beth’s mystery teacher is a champion collaborator who wants to hear all I have learned while teaching Beth the last 2 years.
  • Going to PT and OT therapy up to 3 times a week, only to have them discover what I have already discovered. It was clear in the evaluations everyone thought Beth needed more PT/OT, so we started up again with those therapies (30+ min drive each way, so 5-6 hours of time a week).  While I have learned a few nifty approaches, those aha moments are dying out and she is not progressing any faster than when I worked with her on my own. But I am sticking with OT/PT longer this time, on the off-chance it makes a difference and because Beth loves the gym part of it. Also, I learned through the school eval process it is good to have outside professionals involved to back me up and document things. Sad, but true.
  • Being an aid to my kid at camp and classes is great, but I hate to watch her struggle.  Being an aid to my kid has been a phenomenal experience and I don’t regret it. But it is still hard to stuff the feelings down sometimes when your kid is so obviously delayed and very different from other kids.  Stuffing those feelings is zapping my energy and while I think going to camp is probably one of the best things I have ever done for her, I can’t wait for it to be over. Only 8 more days over 3 weeks to go…yes I am counting down the days.
  • The public is getting to me. Beth often stands out now when we go places. As I wrote before (http://wp.me/p2OomI-1gf), warmer weather means she can’t wear her coat now and so there is more flapping. Plus Beth is really, really big for her age, so she looks older than 6 and people try to converse with her more now. Add to that a myriad of sensory seeking and processing difficulties outdoors and in new indoor environments and she looks much less connected when we are out verses at home. The public just doesn’t know what to do with all that, and they tend to say the wrong things, look away, disengage, feel uncomfortable, over analyze, etc. Again, I don’t blame them, and I do what I can to explain and facilitate their interactions with Beth, but it can get me down sometimes.

I am sure I am missing something above, but you get the picture. Last night I decided it was time to do something about my foul mood. After camp is done (mid-July) we are getting the heck out-of-town. I canceled most summer activities and we will head to places with water to re-group and decompress.  Beth and I both deserve some fun after that last few months we have had.

Beth Throwing Heavy Rocks in Her Stream

Beth’s New Hobby…Throwing Heavy Rocks in a Stream Near Our House

 

What Went Wrong With Our Early Intervention Program?

As most of you following my blog know, Beth made little progress with intensive early intervention from age 3-4. Then we quit and went it alone for the most part, although we see a speech therapist and music therapist (and we have had intermittent help from Floortime and occupational therapists along the way). This year of homeschool has been great for so many reasons. I have confidence that I can teach Beth anything, her engagement is way up, and she has made some amazing academic progress. She is still quite delayed in language and social areas, but she is definitely progressing.  Recently Beth is showing signs of the beginnings of school readiness (noticing other children and following them in stores and on the playground, more self-regulation on outings and on the playground, more language for expressing basic needs and communicating ideas, ability to sit in a chair and attend to school work for short periods, and in general she is just calmer). So, we are contemplating talking to the public school this winter regarding placement next year.

In preparation for talking with the school, I pulled out Beth’s old IEP (the learning contract that the early intervention therapists followed from 3-4). Suffice it to say, it made me feel a bit sick to my stomach. If only I knew then what I know now. And as we did in Corporate America after a project that was filled with problems was over, this post will be postmortem of our Early Intervention Program and will outline lessons learned. The goal for me is to not make the same mistakes twice, but I also thought I would share this with others so they can avoid these kinds of mistakes from happening in the first place.

Too Many Goals, Too Many Therapists, Too Many Hours

We had 27 goals (behavioral, occupational, speech, and physical therapy goals) in Beth’s IEP at 3 years old. I did an informal survey of parents who have kids with autism and they all agreed that 27 goals is far too many for a 3-year-old. Our initial goals were set by a special education teacher who was in charge of Beth’s evaluations and paperwork and they were largely copy/paste with the assurance that “the team can just change the goals once they work with her.” But what I found is the team kept hammering on the original goals, and revising the goals only happened 8 months later after it became clear we were not meeting any goals (except 1 PT goal) and I pushed hard for revisions. By that point there was infighting about why things were not working and soon after a valuable team member quit. I removed speech therapy from the plan because the speech therapist didn’t seem to want to step on the behavioral therapists toes with their “verbal behavior” work and was not adding value and I removed physical therapy because Beth was the least delayed in that area and the physical therapist said, “It is the least of your worries.”  

So, 8 months after starting intensive therapy at age 3, Beth was a stressed out mess and she wasn’t progressing. We had IEP meetings and came up with some new strategies and goals. The team tried to re-write the IEP, but the IEP was still complicated and it had almost the same number of goals. Subsequently, Beth did not improve in preschool, in the home-based program goals, or in her stress levels (aggression and sleeping issues were at their worst and life was miserable, especially for Beth). So, at the age of 4, we took a break from all services after preschool was done, because we decided to let her calm down while I taught her myself. Now after 1.5 years of working with Beth on my own and looking back, I believe a significant root cause of Beth’s unproductive year in early intervention was simply too many goals, too many therapists, and too many hours. We had 6-7 therapist at the beginning, they worked for 4 separate companies, and the behaviorists had a 3 tier management hierarchy that impeded innovation and quick changes to the IEP. In addition to the bureaucratic problems with the program, Beth was still in a prolonged stranger anxiety phase and integration was such that she could barely interact with two people she knew (like my husband and I) at the same time let alone multiple strangers, which meant all those therapists coming at her for 20+ hours a week was simply overwhelming. And underlying those problems was that Beth just wasn’t ready for the program and many of the goals in her IEP .

Misunderstanding of Readiness and Unique Developmental Path

When I look at the goals in her IEP at 3 years old, what stands out is that she was not ready for many of the goals in the document. I know that because she is just now meeting many of them and I witnessed her development unfold over the past 1.5 years. So I guess there was an assessment and goal setting problem. But Beth also does a lot of developmental dipping. She will do something once or twice sometimes, but she may slip back into a previous developmental stage again and stay there until she is really ready. The appearance of Beth being ready for more than she could handle with communication and academics fooled both me and the therapists, and led to problems in goal setting. In addition, Beth had very uneven development and we had numerous goals to choose from ranging from 12 month level to 3-year-old level. When I look back now at which developmental milestones came first, we were totally of the mark in the goals that we chose.

Since it is difficult to assess when Beth is ready for goals and she is all over the “typical” developmental map, how should we have set the goals? The only answer in my mind is we must use her strengths and interests  and simultaneously have the developmental map in mind so that we could recognize when she is truly ready. It takes a lot of experimentation and revisiting things you have tried before that did not work. It also takes innovative teaching to find her true abilities, because fairly severe motor planning, attention, and communication issues muddy the picture. Unfortunately, using her strengths and interests did not happen and innovative teaching was lacking.

Missed Opportunities for Using Strengths and Interests

According to the “typical” developmental chart, Beth had some higher level academic abilities at 3 (for example, she knew colors, shapes, numbers, letters), and those were not set as goals because we were working on other things according to the VB-MAPP (I will go into some detail about my issues with the VB-MAPP in another post, because I have a few big bones to pick with it). The biggest mistake is that we did not use what she already knew, like colors, shapes, and numbers, for goal setting. We were trying to get her to play with typical toys, name objects, play certain physical games, and use her hands for certain tasks. Why didn’t we just have her name colors first?  Why didn’t we go straight to making letters for hand-use goals since she loved them so much? We could have done a letter obstacle course. She liked iSpy books, why didn’t we start there for the receptive language identification and make books that looked like her iSpy books. So many missed opportunities. And by the end of the year of early intervention, we were all so busy trying to get her to talk and do new things, she had forgotten colors, shapes, numbers, some letters, and how to do the iSpy book. I will never make this mistake again. If Beth goes to school next year, her strengths and interests will be in that document somewhere and it will not be forgotten this time around.

Lack of Integration of Goals

Why separate verbal goals from physical and occupational therapy goals just because they have different therapists? Based on goals that we have met in the last 1.5 years on our own, I believe that all the goals should be integrated. For example, on Beth’s old IEP we have ball play goals. But we do ball play now for social interaction, listening skills, and slow expansion of her visual scanning (we started by throwing it directly at Beth, now we are moving away from her core and up high or off to the side).  We even taught her to count while playing ball to extend her time playing and to work on counting and she loves it. She loves it so much she will toss a ball back and forth with another kid now. Ball play is not just a PT goal, it is a PT, behavioral, speech, and OT goal. Beth, like any other kid, learns best in an integrated fashion.

Physical Issues are Primary Problems, but Were Not Adequately Recognized or Addressed in Many Goals

This is a goal in her old IEP: “Will demonstrate improved visual motor control (coordinate trunk, head and neck control with vision) to complete an activity with minimal to moderate cueing, i.e., scanning for materials and direction from variables sources over 3 data collection points.” I believe that was an occupational goal and I think it was trying to get at one of Beth’s core issues, which is that she has physical problems which make doing nearly anything academic hard for her. Motor planning, low tone, and head/neck issues are the reason she has trouble sitting on the floor, sitting in a chair or attending for long periods, and scanning for items during reading and other activities. As it turns out there were many IEP goals written by the behaviorists that required her to do these things, with no regard for how physically difficult it was for Beth to do the tasks or how to accommodate her. Again this is partially problem of integration of IEP goals and ideas across therapists, but it also reveals what can happen when behaviorists take over a program and don’t consider the reasons for “behaviors” and don’t consult the other therapists. Basically, they were working in a silo. Maybe if they would have discussed the visual scanning issue, they would have realized that visual scanning tasks (like beginning iSpy books with only a few items) should really be the first goal, not matching a field of ten identical and non-identical items (yes, that is an actual goal from her IEP, sigh).

Onward

The past is the past, and I can’t change it. But going forward, any future IEP in school will include the following:

  • There will be a minimal number of therapists involved. I want the teacher to be the leader, with mostly consults from other fields (except speech therapy). If I can’t get people to integrate, then this is the best I can do.
  • There will be minimal targeted goals that are at the right level.
  • Beth’s interests and strengths will be stated, as a starting point or as a teaching strategy in every goal.
  • The goals will be integrated, with underlying physical issues appropriately recognized and accommodated.
  • Beth’s optimal learning strategies will be specially stated, in an effort to get others to use the strategies we have developed through long hours of experimentation.