“I lost a little control.”
This is what my son tells me when we discussed his most recent trip to the play therapist. Alexander absolutely loves going to see Miss Natasha - they get to play for an hour. Near the end of the session she always brings me into the room to discuss Alexander’s progress. Well it turns out he is doing really well but she did comment “but he got mad at me when I moved one of his characters and threw sand at me.” She wasn’t offended by it, she knows his desire to control every move these characters make on the sand table. She just kind of said it matter-of-factly. Alexander just kind of grimaced while hiding behind a pillow, he knew that was something he probably shouldn’t have done. Miss Natasha then went on to explain how she used that as a learning tool for Alexander saying “If I were your friend and you did that to me on the playground I probably wouldn’t like it much.” While we were driving home Alexander told me “I lost a little control.” Yes sweetie you absolutely did. The fact that you are now able to recognize that and then share it with me speaks volumes. You’ve come a long way in the six or so short weeks that you’ve been in play therapy. I am looking forward to how well you do in your social skills group next week!
Last week I was sent a link to a YouTube video published by an individual named Christschool - the video is titled “Autism Everyday is a ‘Doctored Film‘”. I don’t know much about the individual who produced the video but he seems to be fairly popular with the neurodiversity proponents. The video is long, 15 minutes, but I figured it was worth 15 minutes of my time if it countered the awful video produced by Autism Speaks entitled “Autism Everyday“. As I expected it was definitely worth that 15 minutes of time. Bravo Christschool for an excellent video.
A few days after I saw the video the topic came up on one of the autism message boards that I go to. This is a general parenting site that has a subsection for autism and while I read daily I usually only post a few times a week. I often-times find myself shaking my head at some of the discussions being had on this board. It is not uncommon for posters to come on and ask advice from other posters about how to implement their new EDTA chelation protocol or to find out how many B12 shots to give. The gluten-free/casein-free (GFCF) diet is also discussed regularly and one mother actually decided to stop an important medication for her child at the recommendation of another poster because the medication contained lactose. No call in to the doctor to determine the effects of stopping the medicine, just an “ok, this is an infraction, we’ll stop it.” I can only imagine the roller coaster lives that some of these children may lead.
So this video comes up as a topic of conversation and a good 95% of the posters railed the original poster for daring post something that speaks against Autism Speaks. Several mothers chimed in that they, too, have felt that death was the only option for their child at some point in their life. Then the wars went on to parents of “high functioning” children vs. parents of “low functioning” children. How dare a parent of a “high functioning” child post something like this - their child isn’t “low functioning”, they don’t know how hard life is. I never bothered to post on this thread but like an train wreck in slow motion I couldn’t keep myself from watching.
I have touched on the divide between the biomed crowd and the neurodiverse camp before. I am still relatively new to all this but have found myself completely on the neurodiverse side of things. No I don’t think there is a cure for autism. No I don’t think Autism Speaks speaks for my family. I am surprised that a lobbying organization the size of Autism Speaks has no autistic individuals on their board, no autistic individuals that speak at their meetings, basically no input at all from adult autistics. I have read many reasons as to why this may be happening but the consensus seems to be that the leaders and members of Autism Speaks don’t want to envision a future where their autistic children grow up to be autistic adults. If they don’t recognize that reality now then perhaps they won’t have to face it in the future.
Okay this post seems to have meandered a bit - just a braindump on my part that started with Christschool’s video. I wanted to close this post with a link to post made today by Kevin on his Left Brain/Right Brain blog. Kevin is a fantastic blogger and neurodiversity champion. Enjoy: On Media, neurodiversity, and science.
Summer break in my household actually began last Wednesday at 10:43 am when my son was dismissed from his last day of kindergarten. There was no official promotion ceremony but on Tuesday all of the kids came out of the school with little construction paper caps on and they all proudly held their kindergarten graduation certificates. The teacher lined all of the kids up and then counted down…3, 2, 1 and all of the kids started to sing a cute little song. Well, almost all. My son promptly turned around with his back facing the row of moms all furiously snapping pictures of their proud kindergartener singing about how they’re almost officially 1st graders. I just smiled and let Alexander keep his back to everyone. I knew that he was not comfortable with the situation but he was standing there, that was good enough for me. When the song ended the kids all ran to their moms; Alexander turned around and casually walked to me with a little smile on his face “hi mom.” I responded “Hi sweetie” and went and had him get in the car. He then told me that he was singing the song just very quietly. I asked him why he turned around and he responded “I was a little nervous.” Sounds good kiddo, I don’t blame ya!
So Thursday was our first free day but I had a play therapy appointment scheduled for Alexander. I wrote down the wrong time and went an hour early but thankfully realized it before we’d waited long so we went and ran a few errands - mainly dropping off the paperwork for his social skills group that was pushed back to a 6/7 start. Well we get back to therapy and Ava and I dutifully go to the waiting room while Alexander gets to have fun with Miss Natasha. She calls us in for the last ten minutes so we can discuss Alexander’s progress - she said he is doing really well and is definitely ready for the social skills group now (before he was just too rigid). She did say that he got a little upset with her moving his characters today and threw sand at her (they play with a sand table). However she was quick to say that he realized what he did was wrong and quickly said that he was sorry and explained “I lost a little of my control.” We’ve really been working on Alexander’s impulse control (and have been for well over a year) and he’s at the point now where he is finally in-tune with it. Wow!
Ava’s last day of school was earlier in May. I just received her OT follow-up from the school and she met all of her goals but one - she can’t wheelbarrow walk far enough. However her IEP is in place until 9/24/07 so she still has some time to work on that.
So summer will be busy for us - both kids will continue their occupational therapy, they are also in semi-private swim lessons. Alexander will continue his play therapy as it has been a tremendous help to him and then we’re adding his social skills group. We’ll also have lots of unstructured fun time - mainly with family. I should hear sometime this week if Alexander’s out-of-boundary exemption was approved so he can return to the same school. Once I get that news then I can relax for the summer!!
It has been four days since I’ve updated and I feel so out of the loop. I really need to get into the habit of blogging daily, it is so therapuetic for me. I thought I would just do a quick update on the mindless mommy family - that is me, the hubby, and the kids.
Alexander is doing really well with play therapy. The therapist we see is wonderful and Alexander trusts her which is so important. In session yesterday she messed with layout of some of his toys and he said “Hey, put that back.” So she used that as a learning point. She suggested that perhaps when he plays with his friends that if he said something like that it might hurt their feelings so instead he might say something like “Can you please put that back?” Little things like that can make a huge difference in his peer interaction. She said he’s almost ready for a social skills group which is good because his group starts up on 6/7. Some may find it odd that a child isn’t ready for a social skills group that is made up of peers with social deficits but the way the therapist explained it to me is that he is so set in his ways and so absolutely rigid that he wouldn’t be open to learning while in the group. While he’s still very rigid he’s been gently challenged continuously over the past month or so and is a bit more receptive to the challenges even though he still doesn’t appreciate them.
Ava is doing fantastic. Her language skills are blossoming and as a result we are seeing less meltdowns on a daily basis. I asked her not to stand on a box the other day and she looked at me and said “why?”. My jaw dropped - did my little girl just ask me WHY? I was reading on a parenting message board where other parents of children her age where tired of the ‘why’ question and here I was just hoping to hear it - and I heard it! Of course when I explained why she just looked puzzled but she asked it! I haven’t heard it since but I am certain I will hear it again. She is out of school for the summer and we are working on increasing her receptive language skills to get them on par with her expressive. She starts swimming lessons next week as well - yay for Grandma taking both kids to semi-private lessons - the class will only be Ava and Alex.
Me - I am alive and in a much more productive state of mind. I have started individual counseling to help me manage my stress levels. I thought I was doing an OK job but evidently I haven’t. I have a grand plan this summer - take some time for myself. Yes, you heard it, I’m going to do some special things just for me!! 
Hubby - He’s had an epiphany of sorts and I think our relationship has rounded the corner on to more positive ground. We have a long road ahead of us but now I believe that he is committed to putting the time into our relationship that it deserves.
So there it is - my little update.
I have previously mentioned Alexander’s issues with rigidity - it is a common theme among children and adults on the autism spectrum. His play therapist has us gently challenging him when we feel the situation is right. As always Monday is occupational therapy day for him - his therapist is Ms. Sheila and she is wonderful! As they were going to go into the small room for the infinity walk (he doesn’t like me watching) he was insistent that she get two of the red cones to walk between. I started to suggest he take one red and one of another color but stopped myself; he hasn’t been the most willing participant in the infinity walk and now was not the time for me to challenge him. Sheila kind of looked at me quizically and I told her that we are supposed to gently challenge him to help with his rigidity issues.
Fast forward a few minutes - he completed the infinity walk and out he comes with a smile on his face. Sheila asked him to pick up the remainder of the cones from the obstacle course and partway through he said “what number was I on?” He has a major number obsession and I quickly told him that he didn’t need to count but Sheila being the wonderful person she is started to engage Alexander in conversation. “How was your day Alex? Pick up the cones.” Alex would start counting the cones in his hand and Sheila would ask him a question sometimes putting her hand gently under his chin to get his attention “Alex, I’m asking you a question.” She’d then ask a more specific question and he’d stop counting the cones and answer. She’d remind him to continue to pick up the cones while she kept asking him questions. He’d pause to answer and then quickly count the cones in his hands. They kept this back and forth up until he had picked up all the cones which he promptly counted.
The next activity was for him to stand on a bosu ball while they tossed a weighted ball back and forth. A few tosses in he said “what number are we on?” and she said “oh we aren’t counting, we’re just having fun.” He paused for a minute and said “Oh yeah, just fun, I don’t have to count.”
Not only does Sheila know her stuff with regards to OT, she knows her kids and can incorporate so many things into his therapy. She took our 30 second conversation about challenging him and immediately incorporated it, naturally, into his therapy. I am so thankful that we found her!
This is an article that I received from the Asperger’s Parenting group I belong to. I wanted to share it as I found it quite fitting for today, Mother’s Day. Happy Mother’s Day to all of the moms out there!
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MOMS AND UNPREDICTABILITY
By Julie Coulter
Years ago, I was driving our minivan west on Georgia Route 316 towards the
orthodontist’s office in Duluth with the kids in the back seats when I heard
my son, Drew, say, “Mom, I have a gum wrapper stuck up my nose.” Staying
focused on keeping the car on the road, I calmly said, “Can you try and blow
your nose and see if it will come out?” You see, Drew had braces on his
teeth at the time and couldn’t chew gum. Someone had left a gum wrapper in
the little cup holder in the very back of the van. Since he was very
observant and had noticed it and since he couldn’t chew gum, he said he just
wanted to “smell it.” So he had held the little rolled up wrapper up to his
nose and…
We didn’t learn how to deal with this in those weeks of childbirth classes
prior to Drew’s birth. We didn’t learn a lot of what we would need to raise
children. Maybe the fact that we missed the last childbirth class because
we were in the birthing room that day when Drew arrived ten days early
should have been a clue that life was about to lose predictability. We
certainly didn’t learn about life with a child on the autism spectrum.
During the last year, Dan and I have had the wonderful opportunity of
meeting families who live everyday with children and young adults on the
autism spectrum, while producing our videos for the siblings of those on the
autism spectrum and with Asperger Syndrome. In most of the interviews, Dan
ran the camera and I was the interviewer, talking to the parents and
children who have family members on the autism spectrum. Many times, I
found myself fighting back tears in listening to the mothers tell about how
they have learned to support their children, work with school teachers and
officials, teach themselves how to parent a child with special needs, and
cope with a life that came as a series of surprises. I listened to their
stories of hard-earned achievement and triumph as their children learned new
things and made steps forward.
One thing is predictable in the world of the autism community: watching our
unpredictable children succeed in their attempts to learn to deal with
unpredictable daily living makes us very proud.
Oh, yeah, about the gum wrapper. You will be relieved to know that our 23
year old son is not walking around with a gum wrapper up his nose. My
advice doesn’t always work, but that day, it did. Drew blew out the
wrapper. Some days, he and I handle the unpredictable very well. Some
days, we struggle.
Doing these interviews reminded me what a tremendous resource mothers can be
for each other. I am so very thankful for the chance to learn from others
how they handle their unpredictable days. When we need support or advice,
it helps to remind ourselves that we can turn to family, friends,
professionals, and especially, to others like ourselves.
We are not alone.
Happy Mother’s Day!
ABOUT THE AUTHOR - Julie Coulter is the co-producer of the Intricate Minds
series of videos that help classmates understand and accept students who
have Asperger Syndrome and autism. You can find more articles at her website
at www.coultervideo.com.
Copyright 2007 Julie Coulter All Rights Reserved. Used by Permission.
As I’ve mentioned previously I am a member of Attachment Parenting International. API has eight principles of attachment parenting of which one is “Seek Balance in Personal and Family Life.” This is the one principle that I am failing miserably at right now. I have absolutely no balance in my life at all - everything revolves around the children and their education, therapy, etc. My husband hasn’t received the attention he needs and deserves and I don’t take care of myself like I should. So now that I am aware that things are crumbling before my very eyes I am making changes in order to find this balance. Finding balance in personal and family life is something that requires work when you have typically developing children; throw in a child or two with different needs then the situation just amplifies.
In browsing through amazon.com I found a few books that I promptly ordered. The first is entitled Married With Special-Needs Children: A Couples’ Guide To Keeping Connected and the second is More Than A Mom: Living A Full and Balanced Life When Your Child Has Special Needs. I was able to pick up both for less than $30 shipped. Now my husband isn’t much into reading unless it is about a technical product so I’ll be reading the first book and giving him the Cliffs Notes version. We’ve also decided to attend some couples counseling and I’ll be attending some individual counseling as well. I’m constantly stressed out and could most definitely use some help in a) taking care of myself and b) taking care of my husband. Now I’m not one of these Mrs. Brady moms - my husband is a big boy and can take care of himself; what I mean is I need to make time for doing stuff that is just for him/us. Thankfully Ava’s respite hours were approved so now we’ll be able to get out more often.
I debated posting about this but you know what - this is how my life is going right now. My blog is about my life and this is not an uncommon theme among married people with children with special needs. The term special needs is an awkward term for me to use but it is the most commonly understood term so I use it. My children aren’t typically-developing - they didn’t come with their own special handbook - and none of the mainstream parenting books I find out there tell me how to solve most of their problems. What I have found is the wonderful world of the blogosphere - other parents who have been there and done that. They are the trailblazers and have been such a tremendous help to me - I thank them all.
Life in the mindless mommy household got a bit crazy these past few days and I haven’t had time to do my most favorite thing - blog! I will be back in action in the next day or two.
Mycoplasma pneumoniae is the little bacteria responsible for my daughter’s pneumonia. It is sometimes referred to as atypical or walking pneumonia and many times patients do not need pharmacalogical interventions. My daughter is not one of these. She was first given Rocephin followed by amoxicillin and then finally Zithromax. Our pediatrician mentioned mycoplasma pneumonia during our follow-up exam and that is why she prescribed the Zithromax. That lady is good - lab results confirmed the presence of cold agglutins which is evidently used as a diagnostic tool for determining what specific-type of pneumonia a person has. The Zithromax was the perfect medicine for this type of pneumonia. Her lungs now sound clear and while she still has a persistent cough it has lessened in it’s intensity.
This morning while getting ready for school Alexander tells me “Nick is my friend but sometimes he tells me he’s not and I tell him he just forgot I was his friend.” Hearing that made me sad. Alexander didn’t have a sad look on his face and made the statement matter-of-factly but for some reason it made me sad. Alexander appears to have a desire to have friends but just doesn’t understand the give and take that a friendship requires. Alexander is very rigid and dictative in his play; he is my little Steven Spielberg; he directs all of his play interactions either with friends or family. If someone steps out-of-line, that is does something that is not on that script in his head, he will quickly steer them straight. If we challenge him, as the play therapist has asked us to do, he often-times just goes off and plays by himself.
I have done a lot of reading about Asperger’s Syndrome these past few weeks and the rigidity is a very common-theme among people with Asperger’s Syndrome. Here are some comments I’ve found with regards to rigidity and Asperger’s Syndrome:
From the article How Might AS Appear to a Parent?
Negative behavioral outbursts are most frequently related to frustration, being thwarted, or difficulties in compliance when a particularly rigid response pattern has been challenged or interrupted. Oppositional behavior is sometimes found when areas of rigidity are challenged.
This was under the section entitled ‘Behavior Problems’; most of Alexander’s behavioral issues stem from his rigidity and us challenging it. I have mentioned previously that he is a creature of routine. If his routine is disrupted without warning we never know what kind of reaction we’ll get. More often than not it is an oppositional type of a behavior - from defiance to a meltdown. I used to look at it from the point of view that he was doing this to push my buttons but now that I understand the reasons behind this behavior I look at these times as a time to learn from Alexander and help him help himself get through these stages. A recent example: earlier this week my husband took Alexander to school but had to stop to get gas in the morning. Alexander had a mild-meltdown. He knows the school gates open at a specific time and he was concerned that he would be ‘late’ even though school didn’t actually start until 20 minutes after the gates open. My husband reassured Alexander that he would be there in plenty of time but it did nothing to calm him down. Guess what? They arrived at the school before the gates opened and Alexander had to wait in the car. It was necessary to interrupt his routine as the car needed gas and even though Alexander had a meltdown he was able to see that yes daddy was right and they were at school in plenty of time.
Here is another quote that describes Alexander quite well. This is from the article: The Six Characteristics of Asperger’s Syndrome
The rigidity also makes it difficult for an Asperger child to engage in imaginative play. His interest in play materials, themes, and choices will be narrow, and he will attempt to control the play situation.
This pretty much sums up what I discussed earlier in this entry. He does have an imagination but it is very scripted. When I summed up his most recent play therapy session I described how the therapist said Alexander had problems giving up control and allowing her to take her turn with his carefully placed toys. She will be working with him on this rigidity and hopefully in time he will be more receptive to the gentle challenges we are supposed to be giving him.
