Tag Archives: special needs

Upping the Game

So I have finished reading Transforming the Difficult Child: the Nurtured Heart approach by Howard Glasser and Jennifer Easley.

I am implementing the point system laid out in the book in the hopes that my children learn some more motivation and also a better sense of worth and accomplishment. It has been a week since we started and I feel I might have made it too easy.. but they are excited, so that is good.

Tomorrow my middle child is cashing in his points to take the others to the indoor amusement park! I am going to be sore for days.. climbing through hamster tubes and tunnels and rope bridges might be too much for me. Last time we went I came home, gave them lunch, and fell asleep for hours.

Today I had the neighbor (who is also a dear friend) babysit the children in the morning while I did some Christmas shopping. I fell asleep in the afternoon and I woke up grateful that I was now able to do this, without the children getting into any mischief. Their growing maturity has made my life so much easier, I was thinking.

I sat down for a snack and a peek at a book and my youngest told me to come look at the living room. I asked her what for, did she clean it? And she nodded in assent. I stood at the doorway and saw there was something on the floor that wasn´t there before my nap. She had taken apart a draft sock (the things you use to block drafts in windows and doors) and thrown the innards (rice) all over the living room. She made sure to get handfuls in corners and behind furniture and had strewn the rest everywhere she could.

I sent her up to her room and got out the vacuum and quickly discovered that I could not get it all up. I sent her brother up to fetch her to pick it up grain by grain in the corners and along the wall but she had fallen asleep. I woke her up, set her on her feet gently and told her she had some work to do before she had any rest.

She did pick it up the best she could. I have no idea what she made that mess for in the first place. I will ask her tomorrow. I hope she sleeps in. This is probably the first time in her life that I have interrupted her nap when we were home and had no where to go.

Today my oldest child figured out how to link the babysitter´s laptop with our home computer and play games online together. I assume all he did was add a server address, but the sitter was still impressed. I hope he always has this ease with computers. He got on when he was thirteen months old and has wanted to do nothing but since then. I have him block coding (which he loves) in Minecraft and have asked him to please use straight Java instead, but he likes the ease of blocks. Maybe I can get him into another language with another project that will force him to learn it directly.

I think they are doing well. Far better than they used to be. Going dairy free has helped Middle Child immensely. The sitter we had today was concerned about Middle Child´s sleep, as he has never slept well in his life until the past six months. She brought over some essential oils that are supposed to calm and help with sleep, and he loves them. I had to argue with him patiently and logically until he would release the little jar and put it on a table next to his bed. He wanted to sleep with it in his hand so he could smell it. He said thank you immediately, too. He usually does not say thank you when he gets a gift, he often says he does not want it or acts disappointed. We have been practicing how to receive gifts, but this was spontaneous. He was really pleased. Such a lovely girl to have as my closest neighbor. I am so lucky.

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Self Analysis

I have not been doing well. I am very stressed out, though I have been more so in previous years. I am trying to focus on the positives and in the process of that I feel like nothing gets resolved. I want to pull my brain out and examine it. I wish my easy going therapist was a psychoanalyst, who would hammer away at my issues until all that was left was me.

I don’t want to get depressed, I don’t want to be lonely, I want to recognize my successes. I am far too ambitious and accomplish far too little to ever properly be satisfied.

I am so very afraid. I am afraid of being found, despite the help of the DA where I moved from and Secretary of State in my new state. I am afraid the children will blame me, despite saving them. I am afraid my middle child will never be happy and my oldest will never be self sufficient. I am terrified that my normal child will feel neglected amid the demands of her special needs siblings.

I am worried that the family critics are correct, that by demanding little from my children to decrease their stress and increase their healing that I am in fact making them dependent and not letting them see how competent they are.

I am ashamed that I cannot conceal my irritation for my mother from my mother. I am ashamed that I have internalized her rejection again and have found myself back at age twelve, asking her to be my friend with my heart in my mouth. I should have grown past that years ago. Should have gotten over it the moment she told me I was not her problem when I cried to her that I did not want to be on the street at eighteen. I should have gotten over it at eighteen. I should have left and not looked back. She did not want to be my parent, so I should have stopped looking to her as one. Why did it begin to bother me when I had my own kids? I want to let it all go.

I am frustrated that I have not taken the entry tests yet for community college. Surely it is easy to flunk the math and pass the rest? All I have to do is get a sitter and then go. I will never start if I don’t do it step by step. Why am I standing in my own way like this?

Yoga. I am going to try yoga. Fifteen minutes.

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Autism and Bullying

My son was kicked by some children in the neighborhood tonight. He tried to get up but they would kick his legs out from under him. He was more frightened than he was hurt, though tomorrow I am going to check for bruising because he said he could feel it and he often does not feel pain. Nothing showed on first inspection. This is sometimes an issue because when you think he should be hurt, he is laughing instead. You can see how this would escalate, though I do not know if that was the case this time. Another mother told me her son had been kicked by one of the other children before, and he kicks hard. I was holding him while he was crying, just after it happened, and as the perpetrators approached he cried more forcefully, becoming hysterical and saying he didn’t want them to come any closer.

That was PTSD. I could see it. Maybe he remembers his father kicking him, or kicking me. This is something to take to the psychologist tomorrow.

His brother tried to help during the incident by engaging one of the boys close to his size, and an older boy in the neighborhood who has known him for some years at daycare also helped a lot to get him away and find me (I was on the other side of the building with the other mothers). But the worst was that his best friend had joined in, she says she didn’t realize how serious it was. His brother said he was scared to do more than what he did. I need to ask him what more he thought he should do. I did tell him it would be good to run for me, screaming all the way, so I could help.

I just kept thinking this was his life. This is what I expect from other children when they encounter a child with special needs. I have to remind myself that others helped him, that others will help him. Every day I wonder if he will learn to be independent. He is okay engaging with people, he can pay for things and ask questions. It is the self care and the self preservation that I worry about. When I was his age I was getting beat like that at least once a day, by my older brother. I don’t know how anyone can watch a child cry so hard and not feel sympathetic. I don’t know how my mother always walked away. I don’t want him to become accustomed to such treatment, I want him to see it for what it is, and judge others by it as they should be.

I cannot make the world a safer place for my son. I can only teach him how to stay safe in it, the best I can.

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Reassessment

The morning after the IEP my Asperger’s child attacked his daycare teacher, whom he has known for three years. He simply would not sit at the table and became enraged when told to do so, to calm down. He stomped on her feet, screamed, and spit at her. She called me, but she did not write it up. I have to request documentation of this.

He has had some serious consequences and lost all the privileges he ever cared about, including the only birthday party he was invited to this year. He is required to make reparations. He has already apologized. He is on guided reading, too, I have nearly a dozen books on anger and bullying for him to read.

I have had to rethink his treatment plan.

I called and had his medication increased. This is a PTSD regression, I hope. Did I mention this our anniversary month, when we all get triggered?

I then went to the county and asked for further resources. I can have him assessed, and if he meets qualifications I can receive grants for further therapies, a personal care attendant, or etc. But not a service dog. For some reason, that does not qualify.

I have to leave another message for the equine therapist. He has not returned my calls.

I am so sad about this. He has not done this for a very long time. I know this is often typical autistic behaviour, but I have never allowed it. I don’t want him to go down this road.

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Managing ADHD and PTSD in the classroom

My son has ADHD. Not the sort of ADHD where people shake their heads and ask why you medicate your child at such a young age. The sort of ADHD where your son is in time out all day, weeping because he has a ¨bad heart and cannot be good¨, where he catapults over the couch repeatedly because he is trying to listen to you, but cannot sit still. The sort of ADHD where other children get hurt. Because ADHD and PTSD together make for NO IMPULSE CONTROL plus anger.

He has a good heart.  A great heart, the sort that loves small children and bugs. But he is so triggered, all the time. His ADHD makes him a walking textbook case of PTSD.

Which is why he is on medication.

But the meds are always being tuned, nothing works and keeps working as his body grows and as he acclimates to it. We have to keep tweaking the meds. To make sure they do not wear him out, or dumb him down. He needs to be himself, just under control.

His meds have been tweaked, because he was so tired a few months ago that it scared me. Now he is on time release twice daily. Clonidine. Which helps with his PTSD, a lot.

But it did not stop him from helpfully blurting out answers in class, talking out of turn, and other issues with verbal self control.

So I made him a bracelet after the med change.

It is stretchy, for comfort and fidgeting. It has little cheap plastic beads on it, in his favorite color.

When he wants to blurt something out of turn, he is supposed to move a bead over, instead.

It works like magic. But he has been using it backwards. He moves a bead over after he blurts something, instead, so his whole day is a sort of contest with himself not to move his beads over. The first day he moved three beads over. The second, two. The third day of his new bracelet no beads were moved.

His teacher has thanked me.

Other teachers in the school have been talking about it. I hope someone stumbles across this and finds that it works for them, too.

For his autistic brother I made another bracelet in the hopes it would bring good results. It is alternating dark and white beads.

The first bead is dark, for the things he wants to say but should not, like ¨I hate you¨ or ¨You’re a liar¨ which are true statements for him, but not very socially acceptable. Saying such things makes him a bully.

The second bead is white, for the appropriate thing to say. So instead of replying to a friendly ¨Hello¨ from his classmate, he will not say ¨I hate you¨ any longer (I hope!) but rather ¨Hi¨. He will still have said the wrong thing, the honest thing, in his head. To his bracelet. Then he gets to move the white bead with the appropriate response, which I hope he will say instead. Reprogramming, see? I hope this gets him thinking more about what to say. He said his first day went well. Next week will be the real test.

I wonder what the psychologist will think of my solutions.

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The Psychologist- April 2015 and A Bit Of Rambling.

Yesterday I saw the psychiatrist nurse with one of the boys. I told her about my oldest son’s reaction to Tenex/Guanficine, which is a horribly overwhelming increase in his anxiety, regression on rigidity and transitions, and a much lower tolerance threshold. I gave it my best shot, six weeks, and I don’t like it. There were some benefits, more communication, more identification of feelings and assertiveness, but that slipped into bullying, as I had mentioned before. Not quite the result I would want.

She wanted a low SSRI instead. I said no. She wanted a very small dose of tried and true hypertension meds, the kind that I take. That was no problem. I have to pick them up tomorrow morning. I am weaning him off of the other medication. I don’t like SSRIs. I will try everything else first.

Today I saw the child psychologist. All the children went, because apparently children do not need daycare on Good Friday, as all good people take the day off. Or something. Daycare was closed, I mean to say. I prefer to get paid, so I worked and had a sitter and then hauled all the children to the psychology appointments.

The child psychologist said to me: ¨I don’t know if anyone has told you lately, but you are a really great mother. Look at them, right now, compared to how they were two years ago.¨ She was right. The baby was off by herself, arranging plastic food on plastic plates. The boys were huddled together over my phone, analyzing some monster foe in the game they were playing. No fighting. No outbursts, no hitting, no clinging to mommy. Their progress is truly miraculous. But I cannot take all the credit. There is:
One consistent family who interacts positively with them
One fantastically calming occupational therapist
One intuitive child psychologist
One experienced child psychiatric nurse
One super educated skills therapist
One really canny pediatrician
One cheerful nurse of said pediatrician
An army of young women at the daycare(low turnover), who love them.
The internet. I have done so much research on my kids and their issues online it is nearly obsession. I mean it is an obsession.

Soon we will be out for three years. Three years of recovery. A long time.

My son told me about a nightmare he had, I recounted it for the psychologist, she took a few notes and asked me on a notepad if my son had been sexually abused. It turns out that a common nightmare for abused children has them being eaten while their caregiver is looking for the monster somewhere else, unaware it is consuming their child. For as long as I can remember, his nightmares have been about teeth. Things with teeth, things biting him. This is the first time he told me about being eaten.

Today, on the advice of the psychiatric nurse I crafted a long letter to the healthcare plan ombudsman, requesting an appeal to the decision to deny my son his necessary medication that costs so much and makes education possible for him. I have been paying out of pocket. It took me an hour, I would say. Thirty minutes later the pharmacy called me and told me they finally had a response from the insurance in clear English, that the coverage would begin in four months. Only four more months out of pocket on these meds and then never again. The letter never left my bag. It was telepathy!

My living room is fantastic. I have a battered but clean couch, two bean bag chairs, a fabric tunnel with reinforced steel ribs, a Wii, a computer, fidget toys, Legos, and a lot of books. The children are either there, or outside on their bikes. I remember when we were in the shelter and there was nothing. Nothing for them to do. We had nothing at all for weeks, when the police took me back to get whatever I could fit into a rental car. I had to tell them long, super long, stories about how superheroes chose peace over violence and friendship over enmity to keep them entertained. Now they are never bored. Behind the living room, on a wall of the kitchen, is our art area. I have everything in there that they ever said they wanted for art.

I used to put tshirt diapers on my daughter. Not to be thrifty. Because there was no alternative. Our lives are so much better since leaving, in every way.

Here is my advice to anyone experiencing domestic strife:
If you have domestic abuse in your house, separate, move, divorce, or leave with the kids. Don’t expose your children to it. My sons might never recover from it. PTSD is usually a lifelong illness, it changes the brain and the brain’s chemistry and is hard to recondition. Children are, obviously, more vulnerable to such ailments than a functioning adult with a set identity would be. Think of your life in third person- what would you advise a friend to do, in your shoes?

If your child is autistic or quirky:
Don’t force them. Be supportive. Coach them, rather than correct them. Guide, rather than discipline. They cannot help it. Give them the tools they need to be in an environment that does not overwhelm them, or they will not be capable of learning anything. Dampen the sound, the lights, and get rid of the clutter. Learn what causes overstimulation, and control it. Learn about SPD. Schedule everything very tightly and consistently. If anyone is critical of your child’s differences, shut them out. Focus on the needs of your child.

I had six appointments this week and two sports sessions. Eight commitments. Totally worth it.

The baby is coughing a little when she should be sleeping. I have to go.

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The Charter School

Not the one we are thinking of creating, but the one I just applied to.

I called today and found out that ¨open enrollment¨ does NOT mean Everyone Who Applies In the District Is Enrolled.

I will get a letter in a few days to find out if my boys got in at all.

I hope so. I already told them about it.

Facepalm.

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Special Education Just Got More Special

My oldest son’s special education teacher just called. She has noticed a great deal of anxiety, misuse of the word ¨boring¨ (my son uses it in the British sense, which is confusing to an American elementary teacher, rightfully so), and a general dislike of the mainstream class he is in. My son has been asking more often to go to the special education room to get his work done in quiet.
She wants to pull him out of the mainstream class, but give him the same academic lessons, and break them up with OT and sensory ¨lessons¨.
I want my son to learn.
He is going to a psychiatric evaluation this week. It has been about a year now since he has become afraid to be in a room by himself, and the county insisted he be evaluated, based on observation of his behaviour. They thought he had ADHD. I thought not. He is just like that, I said. He gets bored, distracted, he gets curious -off topic. Oops, my bad, because that is what ADHD is!
His ADHD test came out with a zero attention span. Yet he can focus when he has the drive. The child taught himself to read in a few months, when this same teacher saw him go home for the summer not reading, and come back for the next grade, fluent. She says his comprehension is good. She said his big issue is skipping superfluous words in reading aloud. I told her to give him Hemingway. Hemingway doesn’t use any superfluous words. She didn’t know that. I thought everyone knew that. I suppose my son would make a great auditor, if he could winnow finances and companies like he does with sentences. I suppose right now he would be an editor.
Kidding aside, I know he has the mind to learn, if he is interested in the subject matter. I am so lucky to have a son who likes robotics, engineering, and Minecraft. He has been telling me every single day that he hates school. I hope this helps. I want him to love learning. Hell, I want him to love living. I could care less if he is a straight A student. I want him to love being alive, to be comfortable in his own skin.
Conferences are in a week. If she pulls him out of mainstream now, we should have something to discuss then, and be able to tell if he is more open to learning in the microcosm of his special education room.

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The Short End Of The Stick

My son had his IEP last year, to prepare him for this year. It was held to accommodate his special needs and get him into the special education for the district. I have conferences for him coming up in three weeks, but now I cannot wait any longer to connect with his teachers and discuss his progress or lack of.
He took too long to do his classroom work today, so they made him stay in from recess.
He has Asperger’s, which, for those who do not know, is a form of autism.
Social awkwardness is a real issue with that. So is weakness of the trunk and poor motor skills. Denying him recess (social time, exercise) because he has a disability that makes him go slowly on the classroom work is not gonna fly with me. You would think they would be happy he took his time. He usually rushes through his work, without doing it properly, so that he can move on to free time. It’s been an issue since he started kindergarten. So if he went slow, it is because he is having trouble with it.
I was enraged.
I have to calm down before I call tomorrow. Mama Bear cannot use the phone properly or cooperate readily.
I want them to send the work home with him, or into his special ed classroom with him so that he can give it attention in a quiet setting.
You do not deny the disabled kid the same privileges as the other kids because learning is harder for him. You do not punish the disabled for being disabled.
I could scream.

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Math Class

Today the school taught my son how to count by tens.

So he forgot how to count by fives.

He also cannot count by ones any longer. I tried with him, for a long time tonight. He has forgotten completely, only tens come out, even on his fingers. He felt badly enough to start goofing off.

I wrote a note to his teacher instead of losing my cool. He is going to have enough trouble, I need to be his cheerleader and not his taskmaster. I can make him do his homework, but I cannot magically make him understand it.

No wonder he would rather read a book. So would I!

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