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.
Today was our family meeting with the play therapist - the four of us get together and talk about the last few weeks and then make a plan to go forward. Alexander pretty much hid in the tent in the corner and played by himself. The therapist reiterated the fact that she feels very strongly that it is Asperger’s Syndrome we are dealing with and not anxiety. She said yes she has anxiety but she doesn’t see the generalized anxiety or specific phobias that she sees in children who don’t have AS but have anxiety. She said so much of what she sees with Alexander is classic among children with AS and is happy that we pursued it past the original diagnosis.
She discussed how she has been implementing play therapy with him and has said that from here on out she is not going to be addressing his anxiety because the type of anxieties he has aren’t benefited through play therapy - they are part of the bigger picture of AS. She said she will be working with him on his rigidity as well as social communication. She said she can only do so much social modeling one on one so agreed that the social skills group will be very beneficial for him. She described some of their play sessions and that they take turns and she can just see Alexander completely tense up when she tries to move one of the figurines (they play with figurines in sand and tell stories). She says he often-times has difficulty with the story-telling part and spends more time putting the figures in the precise way. When it is her turn and she moves one it aggravates him. He also let her know that he is afraid of shadows and black spaces as well as noises. I knew about the noises but I didn’t know about the shadows - knowing will help me work through these fears.
One good thing is that he is receptive to sitting down one-on-one with her unlike our group sessions. She figured that there is just too much stimulation when we are all in the room so that is why he sits in the tent. She recommended we get a tent for the house (we had one but it didn’t last that long) and to let Ava know that when he is in the tent it is his alone time (instead of him having to go into his room). So we will continue with play therapy but she is really going to challenge his rigidity. We have been trying and he is absolutely against it. While pretending today I didn’t follow the script in his head and I tried to keep adding my own input and he was not having it - he quit playing with me. Hopefully in time he will be more receptive to cooperative and reciprocal play. I’ve figured out why he plays so well with Ava - she does whatever he says or does. He has a perfect play partner in her.
It has been a few days since I’ve blogged - I had a self-imposed break from the ‘net this weekend and for the most part I kept to it. I couldn’t resist the urge to get on every now and then to check my email or certain message boards but I wasn’t on for long. Hi, my name is Melissa and I’m a net addict.
On Saturday I watched my nephews for several hours while my sister and parents were in training to be able to provide habilitation and respite for my daughter. We went out to breakfast, got the car washed, and then went to a BBQ sponsored by a local car club. Yes, I am into cars. It was nice because a few hours after we got there a gentleman with a Mercedes Benz SLR McLaren came and my nephews were in awe - although they were trying to hide it. My oldest nephew will quickly let you know that this is a $500,000 car. He is a car fanatic, his knowledge of cars is absolutely amazing. At two he would sit in the back sit of his mom’s SUV saying the make and model of every car he saw. It was nice to get some time with my nephews without my kiddos. Now I’m not saying I don’t enjoy being around my kiddos but I enjoyed the alone time with my nephews.
Yesterday was a lounge-around day - I stayed in my PJs all day! I love days like that. I watched a few movies - The Last King of Scotland and Fast Food Nation. Forrest Whitaker was fantastic as Idi Amin - The last King of Scotland was an absolutely wonderful movie!! Fast Food Nation was good as well; albeit gross. I read the book several years ago so I wanted to see how the movie played out. Definitely not one you want to watch while eating dinner.
My husband is off work today and tomorrow so Ava and I got to lounge around the house this morning. My husband took up the duties of shuttling my son to and from school as well as therapy. Evidently Alexander did a great job at therapy trying every challenge that the therapist put before him. He’s really starting to shine now so I’m hopeful that he will ‘graduate’ soon. Shortly after Ava went down for a nap I received a call from the pediatrician - she wanted us to go ahead and get the blood tests done and then schedule a follow-up xray in a month. I don’t dare wake her up early from her nap so I waited until she woke up and off we went to the lab. She jumped the first time she was stuck and the needle missed the vein - they moved it around a few times and couldn’t get the vein so they took it out and tried in the other arm. By then she was frantic and the two phlebotomists were talking to her trying to calm her down and I explained to him that she has autism and probably doesn’t undersand much of what they are saying (her receptive language is much more delayed than her expressive). I was rubbing her head and whispering in her ear as they inserted the needle into her other arm and wouldn’t you know they missed the vein again! Thankfully they moved it just a little bit and the blood started to flow. Instantly Ava stopped crying - she saw the blood and knew that it was almost over. I should have the results in a few days.
It’s only 6:30 pm here but we are getting ready to go to bed. I used to be a night owl but now I’m usually asleep by 8:30pm. *yawn*
My daughter had her two week follow-up with the pediatrician today. The pediatrician said she was able to get the x-ray film from the Children’s Hospital and said she definitely wants to follow-up with another x-ray today. Evidently the pneumonia was in the right lower lobe (I thought it was left) and that the x-ray showed a pleural effusion. The doctor said it was basically a big pus-filled sac in her lung and she wanted to do a follow-up x-ray to determine the status of the effusion. When the doctor listened to Ava’s lungs with the stethoscope she said that she heard a lot of crackling, popping, and some other noise (I forget how she described it). Basically the crackling is directly related to pneumonia. Two weeks ago yesterday while at the children’s hospital the doctor said she *thought* she heard some crackling and ordered the x-ray to confirm or rule out pneumonia. Two weeks ago today the doctor said she might have heard a little bit of crackling and wanted to know if the children’s hospital said she definitely had pneumonia or just that they thought she might have it (they said she definitely has it). Fast forward to today - the doctor said she heard crackling all over. So based on her office visit the pneumonia has worsened.
She should be doing much better by now but she isn’t. Granted she hasn’t had a fever but she’s still a bit listless and has a horrific cough from the evening through to the morning. She will have 8 - 10 coughing fits an hour - the kind of coughing fit that is scary to listen to. She hasn’t left my bed this entire time as I’ve been concerned so neither of us are getting much sleep. None of these signs look good to the doctor so off she sent us for another x-ray. We probably won’t have the results today but on Monday when she gets them she will call me and decide the course of action from there. Depending on what the film looks like she will have us get a blood test to check for coccidioidomycosis aka Valley Fever and/or tuberculosis. In the meantime the doctor has prescribed her Zithromax. She said she looks stable for the weekend as her oxygen saturation was at 97% which is good; anything under 90% is considered hypoxic.
