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(originally written & published on October 24, 2012)
Lately I hate answering my phone when it’s my mom. Since back in May when Kyle first starting having seizures. And I’m sure the wife feels the same way about her parents. And she probably hates getting my 3pm texts asking “How was Kyle’s day at school today?”
The reason? People want to hear good news. And there always expecting to hear good news…and when you give them bad news it’s like a punch in the gut to them.
I don’t know why our folks and siblings should still be shocked when we don’t have good reports to give them. It’s par for the course with us over the past 7+ years.
But they still call and ask
“How’s Kyle doing after the hernia surgery?”
“How’s Kyle doing on the new anti seizure med… Any more seizures?”
“How’s he been at school? Still aggressive?”
And I can hear the hopefullness in their voices. They want you to tell them good news. And sometimes I want to give them the standard answer that I give co-workers & colleages when they ask how my son is doing.
“He’s doing great. Yeah, he’s 9 now. Getting big…time flies…”
But they are family, and they are truly concerned and they want to know so we usually start out with.
“He’s doing ok…..BUT….”
“…BUT… he’s still out of sorts since the hernia surgery…”
“…BUT…he’s being very agressive towards his classmates & teachers at school….”
“…BUT…he’s still getting dizzy and bumped his head a few times on the new meds…”
And alot of these answers will be followed by silence… and then a ton of followup questions, which always includes…
“What does the doctor say?” OR “What does the school say?”
After all these years don’t they know that when it comes to most things autism doctors don’t have any answers & now we are learning that when it comes to most things epilepsy, doctors are guessing as much as we are?
And the school? They are trying their best. I believe that… but they don’t have any answers either…
But anyway, back to these phone calls… The hopefullness in their voices when they ask the initial question “How’s Kyle?” is a killer. I sometimes hate answering that question.
And I fall into the same trap with my after school check in texts. I text the wife everyday around 3pm all hopeful that things are on an upswing and I can tell when I ask “How’s Kyle?” And I get back a quick “ok” text that there is a “…BUT…” text coming and I sit there waiting for the punch in the gut.
And here’s today’s exchange…
Yes, that was like a punch in the gut. Why do I keep sending the 3pm after school check in text? It makes my last 3 hours at work a lot harder…
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I think I’m going to give it up and stop asking. Ignorance is bliss…
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But at least the dishwasher is clean… 🙂
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THE END…
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061114
Well….I know my mom and family mean well….it's gotten easier just to say yeah my son is doing well while at the same time I know that he has had seizures and I have to watch him like a hawk because he is due to have one….it's more of a burden for me to talk about the craziness of raising an autistic/epileptic child that I chose not to talk about it because I live with it and that is more than enough for me to handle…I kinda feel like I have to comfort, reassure or be there for them in coming to grasp with something they would not be able to understand or deal with…..I tell them how he has been when I am ready to deal with it and reassure others but majority of the time I prefer just to say he is ok….no seizure medicines work, out of control behaviors, etc. which no doctor, psychiatrist etc could possible deal with…one day at a time….your wife is lucky that you are there….I like many others have taken on everything alone because of the fact that father is worthless…every decision I have to make is so hard because I have gotten to the point where neurologist just keeps trying different combinations of medicines while at the same time I am the one that sees and deals with side effects….cannot do surgery because they cannot target an area….while he has outbursts of rage and beats me up….or recently started beating other people up….going to try to see if a psychiatrist would help…..If only I can get a tranquilizer shot or something when it happens….that is all I need….the rest I have learned to live with…..hoping when puberty is over it will get better…..wishful thinking.
I totally get this. When my son moved into a new group home in January, after a really long and difficult search to find his adult placement, it went well for a month or so, then old problems –plus new ones– started emerging. I almost couldn't bear to tell people who asked that it was still difficult after we worked so hard and were so relieved to find this place — I can't bear the disappointment and confusion on their faces after I'd told them his initial adjustment went well. People don't understand that this is truly a lifelong process. I wrote about it recently here: http://www.goodmarching.com/?p=221. Thanks for keeping it real.
I have reached the point where I don't want my parents to ask about my son because I rarely have any good news. My mom is frail and is slowly dying of a chronic illness. I don't want to make her sad or burden her with any more worries. I cannot speak to my friends about anything to do with my son because they think I am being negative and am exaggerating. I am not. I rarely call anyone any more and often do not answer the phone. My world has become very small and very lonely.
Omg! This exchange sounds just like me, my husband and daughter! I'm sorry to say that we have a lot in common. My daughter has had problems with seizures and autism since her brain tumor surgery in 2000. I do hope that someday things will get better for our children.
Autism Daddy —
You described it perfectly. There are people I tell things to, and most people I don't. We've had some hard times and I remember getting a stomach ache every day when it was time to pick my son up from school. That was up till he was about 10 years old, then things started getting better. He's 16 now and doing really, really well. Hang in there. It took us many years of trying different things until he became more stable and happy. It's a dumb thing to say, but statistically speaking, your lives are very likely to get much better.
I once was out to dinner and over heard school worker's @ the table nxt to us talking,(don't know if they were teachers or what but I was amaze. They were saying how some parents expect them to undo what they have allow and that if a school age child is in diapers they should not be allow in a gen.ed school,how if the district every say they can't pay them they would walk out quick,they don't like parents who act like their's is the only child in the class and how parents have fail to raise their brats,they want touch the children because all parents want to do is sue them they don't trust parents. One of the worse was they only work with them from 8-3 they are their parents problem for the rest of their life not ours they can wear a diaper to their wedding as long as they don't have to change it. How school staff try their best to avoid parents because all we do is whine like we are owe something why daycare refuse to deal with us or our kids. Yes I learn a lot !!!
Im glad you have a school you can trust and communicate with. The teacher I work with does the minimal to get by so parents think maybe hes trying. But he only talks to students to yell at them or so he can complete IEPs. THe only thing he does all year is IEPs! Me and a few co-workers do all the work! He shoves kids desk in the corner and leaves them there all year long! I hate it. I try to work with them but some are so far gone its really hard work to do and i still have to work with my own 1:1 and keep him on track.
As a parent, if I ever found out my childs desk was in a corner I'd throw a major fit and have him fired, especially if my child was Autistic as one of those students is, and has no social skills, he is verbal and very intelligent, just doesnt try.
Some schools simply suspend or kick kids out of school. I guess it's their perogative, have them arrested, suspended, kicked out, put in an institution or dayschool or I bet some of them call DCFS on the parents to blame them for not taking care of it. But, I don't see any of these things as positive or effective for any child on the Autism spectrum!
Some schools actually do allow Son-Rise methods and some school systems provide funds usually obtained with the help of an educational lawyer to run a Son-Rise program in your home. Other school districts actually do allow for Son-Rise methods to be used! Every district and every school is different but if they don't know what to do – you have got to be the change!
YOU have to get on the ball when it comes to aggression. The school doesn't know what to do. The Autism treatment center of america does have answers that work. The school calls it a crock but it is the school's answers that are a crock – ARREST my child? NEVER
Get this – before I removed my son from school I asked them point blank – what happens when he is a danger to himself or others? They could not answer me! Why? I guess because in IL, the answer is arrest them and they don't want to be sued by telling me so!
Having a child with aggression in school is not a function of having a child with negative behavior. It is a function of teachers ill equipped to manage aggression and use positive and effective disciplinary techniques. Not all children on the Autism spectrum respond to the same behavioral approaches we use with nuerotypical children. They need something completely different from what most schools have written in their manuals. I approached my school teachers to offer methods that work and they said, "that is not our district approved discipline policy." What a crock! I find what works and they refuse to implement it! What IS district approved? High doses of ritalin coupled with MORE ABA to drive them crazier? These are not poorly behaving kids they are too smart for the typical methods! Your son is far more intelligent and amazing for their methods. The problem at school is NOT your son or his behavior – it is their methods and attitude!
Autism daddy, have you asked the school what their policy is when aggression continues to increase and gets out of hand? I don't know where you live but here in IL just about 3 weeks ago a 9 year old Autistic boy was ARRESTED from school for aggression. In states such as Utah, people are giving up their Autistic children to state care because they cannot afford $400/hr outside ABA treatment to help change that outside the school setting. I read an Autism website and learned that typically schools call an ambulance who takes your child to the hospital and medicates them to "stabilize" them and then what? Then, it is recommended that they be institutionalized or put in a dayschool. If those are options you want to be forced upon you then you're on the right path with the public school system. They are ill equipped to manage aggression. Son-Rise is the only method that helped us with that and kept our son from going down that path. He is no longer having aggression but is for a few years being homeschooled using the Son-Rise method until he acquires the basic social and communicative skills necessary to manage a schoolday apart from behavioral interventions and medication to control it. Our son was toppling desks in timeouts, hitting other students, pushing, biting, pulling out shoelaces, spitting and more. He even wandered from the playground and no one told me until it was said by accident at an IEP meeting. I think you really seriously need to ask yourself, WHAT will the school do when his aggression gets so out of control he is a danger to himself or others? YOU NEED TO ASK and you NEED TO KNOW before things are taken out of your hands. It's happens more than you think.
That is absolutely horrific to read and my heart goes out to these kids and their parents. My son has Asperger's, Tourette's, ADHD, and the list goes on. His sensory issues (particularly hearing) are such a problem right now that he is beginning to have very aggressive thoughts towards those being noisy and causing him pain. He is such a gentle boy, but at 16 he is 6'3" and could inadvertently cause injury to someone if he loses control. I am really worried something like this could happen to him, all because he is in pain and cannot find a quiet place in the high school to work. The teachers seem to have lost complete control of their classes and it infuriates me.
I go through this with my mom—-my son and I live with her (I am a single mom), and we should probably stop doing this too. I certainly empathize with you.
Think positive. Things with Kyle are really hard but: He had a seizure which sucked but he didn't completely fall, he had a BM on the potty and still has not regressed in that aspect, he was playing happily in his room, AND the dishwasher was clean.
Somehow I lost half a sentence. I had eight years of his instruction on how to see what our children need and how to find a way to give it to them. That is so much better than most have, and I was lucky to get that time with him, as were our boys. I can only hope the two younger boys are old enough to remember their dad when they become adults.
My boys had an active "Autism Daddy" who found the buttons we needed to push (with trial and error) to bring him to talk. Over and over again… when his early development childhood centre (read: special needs preschool) somehow drove his development further and further backward.
Right now, I envy Autism Mummy, because my Autism Daddy passed away in June, leaving me with one child with low functioning Autism, one with high functioning Aspergers and one who also looks like he will be getting a diagnosis for high functioning Aspergers shortly.
Having said which, I am grateful that at least he showed the way to what to do to help our boys develop into their full potential. I had eight years of his instruction on I am also incredibly glad (sorry AD) that I don't have things as heart wrenchingly hard as it seems to get with Kyle and his condition. Autism is interesting to deal with already. Start heaping other things on top and it just becomes… exhausting.
My son has Aspergers. Therefore not near as bad off as your son. However, I always get the call from me how my son is doing. His usual reply after I tell him the answer is "well if he lived near me…" implying that he could do a better job. Even though I know better it makes me feel like all of his problems are a result of bad parenting and it is like sticking a knife in me. Some people just don't get it.
Your blog is amazing, and inspiring and gives reassurance and hope to parents that cant see the light at the end sometimes. I know many people with autistic children, have turned them ALL onto your blog…It is what they need to know they ARENT alone, it IS hard, sometimes there ISNT an answer, and that is FINE!!! and always always ALWAYS celebrate the little things.As it is the little things that are HUGE accomplishments <3 keep it up 🙂
God, what I would give/have given to have a partner like you in raising my son, AD. The fact that you think about him and check in constantly and reaffirm the fact that you are in it for the long haul w/ Autism Mommy is just so right. Sometimes I start to forget what a useless bum his dad is, until I read your posts and realize what we are missing…even before our divorce I was on my own.
I totally understand how you feel and completely agree with you about how involved the writer of this blog is, with the raising of his son. He and his wife make a marvelous team. I wish I had a partner like this.
I'm sorry. I never know what to say either. Mostly I just lie and say "He's doing good. Getting big…first grade…" etc.
I hate it when I say otherwise and they ask me "what i think it is"…
Um…
I know you are itching to get home to your boy.