Monthly Archives: June 2014

Special Needs Kickball

Today we had special needs kickball. Before I signed up the boys for it, I spoke with the community education coordinator, to explain that my kids had very different needs. So far every kid there has been able to kick, but today a child came who needs someone to kick his foot for him, and then run on his behalf. He seems a friendly boy, he gave my boys high fives and was introduced. All differently abled children.

The other children listen better than my boys do. The therapists are very patient with my children, even when they are pushing limits and intentionally giving them a hard time. It is so nice to see people work with them, rather than throw up their hands or insist that I beat them. So far the people who are the best with my kids are the professionals, or very young daycare workers with oodles of patience and smiles.

Somehow I still haven’t met anyone here for my kids to play with, though I have invited a few families over. I don’t know if we don’t know anyone else because I am wary, if we don’t know anyone because they are wary, if we don’t know anyone because I am too busy with my kids and don’t socialize, I don’t know if it is because I don’t get the culture (surely I must, by now)… and it all seems a Catch 22. Yesterday we ran into a family I like from our daycare at the park, and the mother offered to get me the card for her church. I am sure she meant well. But it felt suspiciously as if she could not socialize outside of her church. It’s a very Christian area, that I live in. They couldn’t possibly know how I felt about religion, and if they did, they would probably fail to see how my experiences could apply to theirs.

I thought this kickball would be a nice way to get to know some of the other parents who understand children who are a bit different, but unlike other community sports, the parents drop the children off and leave. Last year we did T-ball, and the parents brought chairs and hung out until all their kids were done. I was trying to do the same, but I had kids on the playground and kids on the field and I could hardly sit still. 

Sometimes I get tired. Today I was relieved. People were helping my kids learn how to behave appropriately, with patience. Not judging them or myself.

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Making the Day Work

Today at bedtime the final recipe for taming middle child was:
3 trips to parks
1 donut
1 timeout with small, short tantrum
2 beginning tantrums that were defused by piggyback rides or tickling
4 tantrum prone moments that were met with tickling and never developed
3 meals + 2 snacks
2 showers, 1 bath
2 books
 
I never lost my temper, though I did have to physically carry him to his timeout for pushing his sister in the face during a debate by the children on which park to attend. Which, compared to last week, is a huge improvement in his impulses towards violence. 
 
My trade off was no relaxation, a lot of vigilance, a much needed nap, too many conversations about card collecting, twenty dollars extra spent in the store on card devices that emit light and the required batteries, and having to listen to much grumbling over spending one’s allowance and having to work to make more money.
Oh, and I had to pay for some cheap toy filled with candy that he broke at checkout after being told to put it back. I paid for it, and I threw it away, in his sight. I will not be bullied into a purchase. I can be reasoned with, only. His frustration with me over that resulted in a waterbottle being thrown at my head. He missed. Maybe on purpose. He is paying me back the cash in chores, over half the amount already worked off.
 
He did not stop moving until after his last shower, shortly before bed, at which time he sat at the computer and then watched the Muppets until bedtime, about forty five minutes, and since he was still, I got him to brush his teeth and I clipped his nails. 
 
I feel like calling the pharmacy on Monday, just to confirm that his medicine will be ready for pickup before Friday. I hope that day brings some relief. The Tenex is definitely leaving his system, five days to go. 

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Good Day

Today my children did not fight with me. No one told me that they hated me. No one tried to break anything we own, or anything anyone else owns. No one hit me. Every single kid told me at different times that they loved me, and I hadn’t given them anything to prompt such a statement. There were some close calls, but no tantrums.

Daycare staff made a point to tell me each child had a good day. Each of them.

But most important, most appreciated, they left me alone in another room, for an hour. I didn’t even ask them to. I am going to tell them, now that it is bedtime, how wonderfully behaved they were. 

This is a very special day. 

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First Year

Oldest Child brought home a “journal” from kindergarten, in which he wrote and drew on one page per month.

You can see the legible beginning handwriting get far worse. As if he had gone to reverse kindergarten, where you forget what you know, and by the end of the year, cannot write at all.

However. His pictures of himself became much more recognizably human, and a bit less robotic and scribbly. 

There is always the silver lining.

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Father’s Day

For Father’s Day the children and I made the road trip to visit my father. Where I had the big announcement to make. This is how it went down:

¨Big Son was thoroughly tested by the school district and has been diagnosed with autism. I informed his doctor and he has referred him for further evaluation to see if a medical diagnosis concurs.¨

My father’s brilliant response:

¨I guess every kid I know has autism then, because he seems like any other kid to me. They try to pigeonhole everyone into something these days.¨

My rebuttal:

¨You have told me my oldest children are not normal every time you see them, for years. I don’t think this is sudden.¨ 

The man tells me for five years that I had better do something about my kids, even drove hours especially to see me alone without the kids last year so he could voice his concerns about their behaviors, and now that they are getting help, he says they don’t need it. How supportive.

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Conversation With My Daughter About Her Father On Father’s Day

Over cereal my daughter says: ¨Everyone has a Mommy! Some people have Daddies!¨

¨You have a daddy.¨ I remind her.

¨Yes, my daddy is sick!¨ She says with enthusiasm. ¨Let’s get him some medicine!¨

¨I tried to get him medicine, sweetie, many times. He would not go to the doctor, so I could not get him any medicine. If you are sick you need to see a doctor.¨

¨Daddy needs a doctor!¨ She announces to her brothers. 

Her brothers pay little attention, but one does start grumbling words pertaining to passing wind and one’s rear end. I tell her to finish her cereal.

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PTSD In a Five Year Old

The psychologist has seen middle child twice since he regressed. The dose has been doubled, he is tired, and she says she cannot see any difference between his behaviour today, last week, and while unmedicated. The cause of this, however, in her opinion, is more ominous than what I thought it to be. I had assumed it was an acclimation to the medication, but his doctor believes it to be triggers. We have had some anniversaries lately, and she believes there is another cause, as well. My son does not like to talk about what upsets him, and I do not blame him. So I have started tapping the sides of his knees when he is upset, and next session with her we will try EMDR, in my presence, since he will still not allow her to do it with him, and he no longer allows her to tap him, either. 

The only thing I can think it to be is that his friend at daycare has either stopped going, or has rejected him. I want him to tell me himself, as he is upset by suggestions. I am patient. I am deflecting all his attempts to fight with me (it took a half hour to get him to drop the issue of not eating donuts before dinner), I refuse to be his instrument of punishment, I will not contribute to his pain, nor give it flesh. His harsh words and his temper fits are met with humor, consequences if necessary, and set discussion times if I cannot avoid it. I am going to read him books about sharing secrets, being upset, friendships, and see if I get any insight this week.

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Autism is Normal. SPD is Normal. Normal is Not Normal.

My firstborn is diagnosed with autism. I think I get it now, and all I feel is relief that the school will help him, and hope that a medical diagnosis will give him greater access to more intervention and treatment.

As he is my firstborn, he is the normal one. As an infant, he had to wear handcovers longer than most babies, because he would try to pull his skin off of his face, and would make welts down his nose and cheeks. Probably he was desperate for sensation. I held him a lot, and kept him moving. He was addicted to rocking and had to be broken of it at nine months, because he was too heavy and too big, and I could not do it any longer. He hated vacuuming noises so much that I used a handheld carpet sweeper, daily, and had his grandmother take him outside on vacuuming days. He would cry if he heard the noise coming from any other house.

He would not say my name or ¨mommy¨ until he was closer to three. He would say the names of others, just not me, and he would avoid looking at me for the longest time. He would not throw a ball, until he was nearly out of the toddler years. In preschool, if he did not have something in his hands, at circle or music time, he would throw himself on the floor and scream and roll around, in the middle of the circle. Quite disruptive. The teachers opened up the school on off days and let him try all the toys, and then he was not so frustrated and distracted. He ran off, and I got him a leashed backpack puppy. 

He laughed at all the wrong moments, displaying an alarming lack of empathy, and his father would lash out at him in response. As if you can slap empathy into a child. His grandmother taught him to throw things at me and laugh. Sticks, small rocks. He was enthusiastic, a parrot. He was desperate to please, but when his father told him to beat his brother or himself, he resisted and cried in the most heartbreaking way, and this agonized cry always alerted me to the situation, enabling me to put a stop to it.  Despite his difficulty in comprehending the pain of others, he was a sweet child, very affectionate, always ready to sit in a lap, and indeed, at six, he will sit in anyone’s lap, whether he knows them or not. Which has become disturbing, to realize he is so trusting and vulnerable.

He has never felt pain properly. He would fall and bump his head regularly in the first eighteen months, huge knots on the forehead were the norm for him, and he rarely cried about it. Currently he has what looks like road rash on his elbow, and he has no idea how or where he got it. A child pulled him around a playground on rubber tiles when he was four, and took the first layer of skin off of his back, and he was laughing the entire time, which was the teachers excuse for allowing such a thing to happen right in front of her.  He has asked other children to jump on him, bounce on him, punch him, and it has no negative effect, he just wants the sensation. He will forget to tell me he has a laceration, because it does not bother him. He scratches his bug bites until they weep blood and become sores, because he can feel the itch to scratch, but not the pain that signals it is time to stop scratching. 

When his little brother grew older, I thought he was superhuman, as he hardly ever fell down, could jump and climb, and sit upright at a younger age. It did not occur to me that my oldest was abnormal, until he was five and the doctor diagnosed him with Sensory Processing Disorder and noted his muscle development was delayed. Then a lightbulb went off, my other children were not superhuman, my oldest was the different one. I have always liked children like him, in the daycares, waiting rooms, classrooms, I am drawn to them and they to me. Never realizing that I was picking out children who were different from the others. They just seemed more normal, more familiar, more like my own firstborn. The child who set the standard of normal in my perception. 

 

 

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Back to Square One

Middle child has suddenly stopped reacting to his medication. We are back to a complete lack of impulse control. There is hitting, tantrums, a great deal of anger. This is the fourth day. I keep reminding myself that we had good results previously, the doctor has doubled his medication, maybe it will take. I hope.

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Getting on the Bus

So here is what I did and what it means:

I did: I called the pediatrician with the school’s diagnosis. He immediately referred Eldest son to two specialists. The first being the psychologist that Younger son sees. The second being an autism specialist in the city an hour away. I am awaiting a call back to schedule both of those. Today I also informally let the psychologist know that Eldest son will be seeing her. The school let me know that he has far more anxiety than he let on about. Without this diagnosis I would have taken that information to the pediatrician for the same sort of medication that his brother takes and then signed him up with that psychologist, but with the diagnosis I want to wait on that until all the testing is done before medicating him. For all I know, upping his OT and providing Special Ed accommodations will take care of it, and for now, being out of school for the summer will lower his anxiety to nothing, anyway.

This means: Anyway, if I get a medical diagnosis for him, my insurance can no longer deny him. It was made illegal to deny those with autism last year in this state. If I do not get a medical diagnosis, then I am still lucky, as the school will regard him as autistic from here on out, and will provide him with appropriate services, and his doctor will still be able to get him the OT referral, six appointments at a time. Unless he stops showing symptoms, which is also acceptable.

I did: Today his little brother and I picked up different pens and we are going to give mechanical pencils a try, though that is a long shot.

This means: Autistic children forget what they learn more easily than other children, so I need to keep up his handwriting practice over the summer, with better writing utensils that glide smoothly across paper without any unpleasant abrasive sensation. I suppose dry erase is the closest I can get to optimum, with that. I better pull that stuff out of the closet and give it a special box so it is easily accessible to him.

 

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