This must be a sign from a higher power!

[Supermama]

I was doing my daily research on my son, crying to myself that I was so alone in this battle, when I stumbled upon this website. You know that feeling you get when you find a lost $20 in an old pair of pants on a day when you're absolutely needing it? That's the feeling I had when I realized what this website was. My son has taken over every aspect of my life. Sometimes I think I am here only for him. Don't get me wrong- I love him and the others more than anything. It's just that not a day goes by that some kind of crisis erupts with him in the middle. And when I'm not in the middle of a crisis, I'm researching him. Books, internet, pamphlets, brochures- anything to help him and me.

When my son was about 3 years old, I noticed a change. He wasn't the sweet little baby that I cuddled every day. The preschool/daycare teacher began to complain- he's acting out, he's violent, he doesn't listen. She began restraining him on a daily basis. I would walk in many times to find her on the floor, arms and legs wrapped around him. The director agreed with her- he was a bad boy. I took him to counseling. They said the problem was the preschool. I told the director what she said- she kicked him out. Said he was a danger to all around him and they just couldn't help him anymore.

Flash forward a few years. He is now five. He "rages out" then passes out for up to 3 hours a day. First day of Kindergarten arrives and he's suspended for the next 5 days. I take him to counselors and psychiatrists- it's all behavioral they say. ADHD is thrown to me. ODD is thrown to me- so starts his life on medications. The school calls me EVERY SINGLE DAY to come pick him up. I leave work/school. He's passed out on tables, chairs, the lunch line, the nurse's cot, the hallway. I scoop him up off the floor/cot/chair/table and take him home.

He wets the bed every night. I awaken to find him next to me in what seems like convulsions. I research, I go back to the psychiatrists. Is it seizures? I ask. No,no. It's behavior- here's more medications. The following year school says- we can't take it anymore, here's a school that can. They pass him to another school and put him in Special Education. EVERYDAY-come get your son, he's violent, he's passed out. I leave work/school. I request an IEP. Things calm down. No phone calls for a week. Then phone calls start again.

I leave old doctors and find new. Is it seizures? I ask them. *test,test,test* Yes, it's seizures. Hooray! It's a start! I research. What kind? I ask. You, know, seizures they say-then nothing else. When are they happening? before he sleeps? after he sleeps? while he's sleeping? are they twitches/shakes/stares/convulsions/rages? They say, you know, they're seizures. I go through this for 3 years. Researching everyday.

Flash forward a few years. My son is currently 9 years old. His IQ is pretty high, but he's in Special Education. He has a personal assistant who is SUPPOSED TO help him through school. They call me every other day. They wait in the doorway and jump on me like vultures when I pick him up- Your son did this, your son did that. He is suspended EVERY SINGLE WEEK now, so he only goes to school 2-3 times a week. He has an intensive inhome based therapist that sees him 3-4 times a week at home and at school for 1 1/2 hours a day. The school begs me to move him to "special schools" that I can't afford. I found a new doctor. He ordered MRI's, sleep studies, walking EEG's. Still waiting for results. Still I research. I cry every day. I fear the telephone. My job tells me to do something about it or I'm gonna lose it. At least now I know that I'm not alone.

 

[StressedM0mma]

SM, I am happy that you found us, but so sorry that you had to. It sounds as if you have been through such a difficult time these past few years trying to get the right help for your son. I understand completely. I am in the midst of the same battle. Your son seems to have a real medical issue going on that no one would listen to. I am so glad that you found a Dr. that was willing to work with you. That can make all the difference. I hope you get the results soon and there will be some additional answers given to you. There are several of us here that understand the fear of the phone call. I hope your days get better.

 

[TerryJ2]

Welcome, Supermama.
I got halfway through your note and thought, "Seizures." Yep. You got it.
You know what the test results will be.
Now, to make a plan.
There are several people on this board who have dealt with-that issue. It isn't easy, but once you have it defined in b&w and can hand it out to put with-your child's IEP, it will help.
Certain medications will help.
The asst he has is not being a good enough advocate. S/he has to quit calling you for aid and do her job, for Pete's sake!
In the meantime, take a deep breath, and know that you are doing all you can be doing for your son. He is NOT a bad boy. He does bad things when he's seizing, many of which he probably doesn't remember afterward.
I would focus on getting him to remember things that will prove useful throughout his life: please, thank you, I love you, math, English and social studies.
You are definitely NOT alone.

 

[TeDo]

Ok Supermama. Take a Deep breath!! We are here to help you. I am soooooo glad you found us but as the others have said, sorry you needed to.

Has he been taken off all mental health medications? If not, I would start with a medication wash (supervised of course). Many psychiatric drugs can make seizures worse or even cause them. I was thinking seizures too as I was reading the post. I hope they hurry with the results so you can get medications to help control them. THAT will be huge.

As for the school, is he currently on an IEP? I don't know how that works in Canada so I will let some of our other Canadians (yes, that means you Insane!) address that. If you were in the states, we could ALL help you with it.

Welcome to our little corner of the world. You are right to feel the relief you felt when you found us. These wise parents have helped me deal with MANY issues and keep my sanity at the same time. I am glad you FINALLY found a doctor that listens to you.

 

[InsaneCdn]

As for the school, is he currently on an IEP? I don't know how that works in Canada so I will let some of our other Canadians (yes, that means you Insane!) address that. If you were in the states, we could ALL help you with it.

SuperMama's location says... Ohio.

Hi, SuperMama...

Just wanted to add my welcome. I'm not an expert on seisures - there are others around here with experience, though.
(And no, I'm not even an expert on Canadian school systems... but I kinda stick my neck out once in a while.)

{{hugs}}
Its so tough when school is a rock on one side, and the medical community is a rock on the other... and you're STUCK.
Glad something is budging... even if its just inches right now!

 

[buddy]

Oh my dear, I can relate to much of what you are saying. Sad thing for me, my son has a known brain injury/surgery etc. and was diagnosis with autism at the age of 4 but still I have lived that life. the level of dismissing you in both the school and medical community oh my gosh, you must be exhausted. My son had seizures when he had his brain mass and was on medications for a few years. We stopped and by third grade he was saying he felt "fake" he would act out and then get headaches and sleepy. they said it was anxiety. he finally got a neuro who we had had previously and came back to our area and she said, oh no.. put him in for three days and found out he was having temporal lobe seizures all day and night on and off...poor kid. Seizure medications are helping his symptoms a lot but not perfect.

For quite a while things were much better for us, we had a team that did a behavior analysis and developed a plan that was working but not to the satisfaction of the administration so I get daily phone calls too. the stomach turning oh my gosh can't you people get it that this is a kid with special needs kind of call.

what kind of IEP is he on? Is he in a mainstream setting totally or in a resource room in a school? Does he have a special education teacher?

Have they done an FBA and written a POSITIVE behavior plan? if they have is it working (clearly not) so they need to update it and add goals to the IEP to teach the skills that he is missing.

outside of school, has he ever had a complete neuropsychological evaluation? An Occupational Therapy evaluation for sensory and motor issues ?

Does he have any friends? any unique talents, hobbies or interests?

I am sorry for your tears. I am sure there is a lake as big as lake superior that could be created from the amount of parental tears shed from this board.

(did you mean your work is saying that they are going to fire you or that you are going to "lose it" like go nutso (feeling like that myself)).... I had to quit my job to care for my son.

Every time the school says something to you like that you should move him to a special school... write down exactly what they say. If they are not giving him an appropriate education and he is not meeting his goals then they must provide him a place to do that and they must pay for it. Do they have any programs in your district at all?

It really sounds like it is great you are getting better information from the doctors but that an overall evaluation from another source would be very much worth your time and effort.


Hope you have a calm night.

Welcome again, hope you check in frequently... many of us find this place the only place where people can really understand the nature of this intensive parenting experience.

 

[TeDo]

Thanks for clearing that up for me Insane. I MUST be tired cause I was reading Ontario. LOL

Ok, so Supermama, now that I realize where you really are, your son can only legally be suspended for 10 days TOTAL each school year. After that, they need to hold a manifestation hearing. If his behavior is caused by his diability and he has an IEP and the behaviors are continuing, they need to change the IEP and Behavior Plan until it does work. If the seizures can be gotten under control it might be a mute point. Every time they call you to take him home they are denying him an education. It sounds like they have a "Pattern of Exclusion" going and that is also illegal. Check out Wright's Law website and the Sp Ed 101 forum here.

 

[Bunny]

Welcome to the board. Please know that you are not alone.

I don't have alot of familiarity with siezures, but if he is acting out and then immediately passing out, isn't the aggression a sign that a siezure is coming? Did they put him medications for the siezures? I agree with the medication wash. If a medication is causing the siezures, or making them worse, and then you're putting him on a medication on top of that to combat the siezures that makes no sense. Talk to the doctors and suggest that you start over again. We did that with our son and it helped him quite a bit.

Is your son's father in the picture? Does he help carry the load? If you are handling this all by yourself it can be overwhelming!

 

[confuzzled]

The school begs me to move him to "special schools" that I can't afford

if the school is aware of a more appropriate setting THEY need to pay for it, transportation and all--the burden doesnt fall on you to pay. sounds like a team meeting to discuss least restrictive placement is in order, and you *are* part of the team-they cant unilaterally make a change without your input.

my normal reccomendation would be to get the school, at the very least, to re-evaluate him, but honestly, if i was in your shoes, i'd probably hold off until he's more stable. in my opinion, i'm not so sure even an FBA/BIP is worth the paper its written on in this case, at this exact moment in time. to me, it doesnt sound like any amount of behavior mod is going to magically fix this issue. (both may be very appropriate down the line, just not right now)

it also sounds like the medical issues need to be dealt with yesterday--poor kid. so glad you finally found a doctor (neurologist i hope) to investigate. i too immediately thought seizures before i even got to that part--the passing out part of your history seems, to me, to be a ginormous clue to what is happening medically.

i feel for you...its so hard to have to deal with a child with issues and educate yourself on medical/pyschiatric stuff at the same time--its completely overwhelming.

welcome ;-)

 

[buddy]

my normal reccomendation would be to get the school, at the very least, to re-evaluate him, but honestly, if i was in your shoes, i'd probably hold off until he's more stable. in my opinion, i'm not so sure even an FBA/BIP is worth the paper its written on in this case, at this exact moment in time. to me, it doesnt sound like any amount of behavior mod is going to magically fix this issue. (both may be very appropriate down the line, just not right now)

I think this is a good point. If he has one already though, it should be a fluid document (should be, sigh) and to look at internal triggers is highly valuable. Seizures and auras are things beyond his control and the bip can be modified to help regulate STAFF behavior rather than focusing on him.

 

[rejectedmom]

I too thought seizures when reading your first post. You hae done all things right so now you can only sit back till the test results are in. Then you can ask for an IEP meeting to address his needs while in school with full documentation f the medical need.

One other question, did they test his blood glucose levels after a seisure? Low blood glucose levels can cause seisures. My daughter is hypoglycemic. She suffered from rages most of her life. She is now an adult and knows to eat when she feels irritable. Huge fluctions in blood sugar can cause both rages and seisures. medications to ward off seisures are great but if the root cause is something that can be fixed like keeping an even blood sugar level, even better.

 

[Nancy]

I wanted to welcome you from just a few miles east of you on the lake. I can understand your frustration. No parent wants to be greated every day with a litany of things their child has done wrong. He has an IEP so if their accomodations aren't working perhaps they need to request a follow up meeting to modify it. If your school system is like ours and I believe they are very similar I know they won't give you much help but keep trying.

What sort of special school are they suggesting and are they willing to pay for it? I'm not suggesting this is an answer but have you explored it?

Nancy

 

[SocRocks]

Have they ever done an EEG?

 

[Supermama]

Thank you all so much for your suggestions and wisdom! Yes, he does have an IEP, he is in "behavioral Special Education classes" where the setting is 9 children to unfortunately two teachers-1 who is in her late 50's and 1 who is in her late 60s, (now, I'm not saying that older people shouldn't be teachers, I'm a teacher myself, but they tend to be set in their ways and somewhat antiquated in their approaches). Tired of feeling bullied at the school, I contacted the Ohio Coalition for the Education of Children with Disabilities. They set me up with a parent mentor who attended a meeting with me. In response, the school brought in the district safety director. The mentor suggested to them that they should supply my son with a personal assistant. ( Little background info- my son is a "runner", it's in his IEP, when he feels upset- he runs.) He's been through 3 in two months. When the first one left, I asked why. They said "we don't know. we called her and she said no one told her to come in." ??? But....ummmm....she had been coming in everyday for two weeks! They gave him another. The first day she was there, my daughter (who goes to the same school) told me that she saw the woman pick up my son and slam him onto a bench, hurting him. I was furious! ( Little background info- I work as a preschool teacher in a daycare and I also drive the school agers to and from school on occasion.) I called one of the teachers over to my bus and told her that I wanted to speak to his assistant immediately. She walked to the door and told the woman that I wanted to see her, but she refused to come out. They (the school) requested that I have a formal meeting the next day and that I give them "warning" before I come in. Long story short, they denied it happened that way. They claimed that he was combative so she had to restrain him. Turns out that they "restain" him quite often. I asked my son what his assistant does all day and he replied " when she's not texting, she's helping other children with their work. She goes to lunch for a loooooong time then comes back at the end of the day." Sadly, :grins:, she is not there anymore. by the way, the first assistant suddenly showed up to work as the secretary's fill-in a few days later. Now he has a male assistant. I thought-oh, good. Maybe he will be a positive male role model plus he will be able to handle my son's "combative" days. I asked my son how he liked him the first day. " Mommy, that guy's a runner! he chased me every time! And, oh yeah, he does that thing my teacher does." "What thing?" " You know, when she twists my arms and holds them way back behind me. I don't like that." So now i'm off to see the school again and have been advised that I may want to call Children Services.
****Also, during my research I found quite a few medical websites that say sleep disorders are often misdiagnosed as ADHD. My child sleeps 16 hours a day. 16. That means he is only awake 8 hours and it is not consecutive. I believe he has a sleep disorder (maybe hypersomnia or narcolepsy?) and being unable to sleep makes him cranky, then irritable, then aggressive, then violent. I am still awaiting results from sleep study and EEG. ( He had a three-day EEG last month.)

 

[TerryJ2]

Wow. 16 hrs a day! That's a lot!
So sorry about the arm twisting thing. I'd have a mtng with-the teachers and counselor and have them show you exactly how it is done. On you. Then have them show you the rule book. Make a copy.