Tuesday

[mscat]

Tuesday is suppose to be my child's big evaluation. Hoever, I was just mailed on Friday paperwork that needs to be filled out before the evaluation, and sent back > Now I am stressed, because it is not going to go back before then... I can't call until Monday, andthey want his teacher to fill out forms too.

I do not want to reschedule either. After waiting months already. I am stressed out now. And mad . :mad: I do not know where the place is, + it is around an Hr 1/2 away from where we live. and now I do not even know if I can take my kid. Pissess me off, cause I finally came to the conclusion that it was going to be ok to have him evaluated.

Tuesday was already turning out to be one hell of a busy day as it was, now this. Not sure if I ouught to try and get a hold of my son's regional center provider, or the number that was on the forms. It was not even the same number that I am taking my son to.

I'll just tell them I got the stuff in the mail on Fri, and will bring the paperwork with me on Tues. That is all I can do. They already have a complete evaluation report done by the special ED , psychologist , evaluation. I gave it to his regional center provider. that was the most current information.

I did not realise how stressful these things can be. my son has NOT had one of these things done in such a long time. I really am not looking forward to it, but, now curious as to what these professionals are going to come up with about my son's developmental progress now that he is 16.

[SweetSue]

Hi Cathy,

Good luck for Tuesday hun, and I hope everything works out ok.

[Guest GingerSnap]

mscat: You know I have the adult son with Down syndrome and I know where you are coming from. The meetings and the paperwork. No matter how hard you try, they always put one more unrealistic hurdle in front of you. I often told my husband that they wanted me to hate my son (making fighting the system, disagreeing with system, trying to make the system work so hard on me) that I would just let them do what they wanted with him. Every person that was supposed to "assist" us was either to busy or appeared to think my son wasn't worth the trouble or maybe it would be difficult for them. Lock you heals in. When I see staff members from the last school my son was in they scatter quickly to stay out of my way. I'll be there with you in spirit - be calm and assertive.

[mscat]

Thank you , Gingersnap .

My child, Matthew. He he has been recieving services since he has been 3 in a half yrs old. He was in such a wonderful presshool program. It was scary though . At the beggining, I was informed, he was so out of control during the inital evaluation , that their was fear their would not be a school placement for him :eek: . So young , but then they saw him at his own preschool , he could sit in a circle with the other children, not interacting, but could sit. at least sit. For a little bit. Even if he fooled around , was not paying attention at all, and stuff. He was able to placed. Thank god.

He was placed into a wonderful class with a great , patien teacher that was so good for him. However, Matthew needed a lot of one on one. The teacher, was so good, I kept him there an extra year. He startated medication to calm him down too. That helped him . He actually started to talk in sentences at 5 yrs old. He only would mimic what others would say before that, not real speech. Now he started to talk .

Than he went into kindergarten. That teacher was dumb. My first reality check. Not all teachers were the same, even the special ED teachers .

So Matthew's next teacher was terrible too. He got away with too much and did not learn anything , the next two years. Then the next teacher, she could not handle him. Geez. He nearly was going to get kicked out. The second year, I found out the scholl placement deliberlty moved him without telling me, way accross anther city, a bad town !!! I was pissed. I was not even notified. I took him to school , and found that his name was not even on the class list. I was so angry. Well I got him back on the roster , into the same classroom. I don't think the teacher was pleased , LOL. Next thing i know it, Matthew has a full time Assistant. So the next two years the assistant was a godsend. She was awesome.

We had our las IEP than , and their was a discussion again about my child's diagnoses. The staff wanted to question it. Ok fine. Now the school staff were trying to tell me he was mentally challenged and wanted to place him in a class for MR students for the following yrs to come.

I was thinking about moving. I knew my son was on the autistic spectrum and also had cognitive delays. I told the school I was planning on moving.

And so we did. WEll , when we moved, the local school district was small, and the teacher, the classroom only had one special ED classroom for all the students. It was horrid. the worst experience by far my son had to ever go through ever. Not only were ALL the kids mean to him, the kids in the class, + the kids in the school, the teacher was as mean as they come. She would even tell the children to SHutup .

BAD , BAD Bad . ... my son was sexually assulted in the back of of apts, by anther stutent who told him he would be his friend forever , and said all kinds of hideous crap to matthew. The kid was a little older than him. BAD , and terrible crap , and the police got involved.

I was able to get my son out of there and out of the town school for good, enrolling him into the special day classess , through Shelly Baird school District that only takes in very special needs children. This is where he should have have had services to began with.

NOW , he has had excellent teachers since than. The ratio is very good. And their are teacher assistants too. The only problem is matthew has to leave and ride the bus at 6:20am and does not come hime until nearly 5 pm every school day. However, he is learning, and in good hands.

SO we have been through it all right. With kids being absolutely horrid , and even abusive towards matthew, even teachers too. It has been a bad rocky road.

For over 16 years my son needs have prevailed over mine. I have had some serious personal issues of my own that I have tried to shiled my child from. It is so difficult to fight those issues too, and than his as well. This is a huge reason why I hate these labels , and diagnoses. On both of us. For Matthew I understand the value, it is so he can recieve services.

However, he is high functioning. But, I do hope this one professional will be able observe the things in Matthew that is of concern , which makes Matthew , Matthew. The obsessions, and what he does when he is happy or excited. This is suppose to be an in depth , evaluation. I am not sure what this entails. I know that this is whay i am uncomfortable , because I do not know what the professional is testing him on or looking for. That is why I am nervous.

Matthew has been to many professionals, and Dr's. Lots of them throughout the years. Just notthrough the Regional Center. I have also seen many children throughout the years with many disabilities . All around me, all the time.

I prefer children with disabilites or people with disbilites, mainly because to me , they have this pure quality about them. What you see is what you get.

One of my son's best friend's name is Joe. He is around 22 yrs old. And on a 3 yrs old level . They are great pals. They have their own way of getting along and understanding the world around them.

Cathy

[Guest GingerSnap]

mscat: I have been involved with the system since my child was 4 years old. Sadly, what you describe is what a parent that cares goes through. Not a lot of parents care, trust me on this. Very few fight the system and just follow along like sheep. I have a friend in AZ that fosters/adopts special needs children and they jerk her around to no end and she still hangs in there and has become an advocate for other parents. I always got "Well, the other parents don't complain about the program." to which I said "Well, I am sorry that the other parents don't care about their children but I care about mine!" They used to make me furious. My son was kicked out of school for assault - a teacher's assistant was trying to pull him from underneath some play equipment on the playground when he was 7 years old (functioning at the 2 years level) and she was "kicked" in the nose - thus assault and being kicked out of school. I could write a book or you and I could write a book and it would take a crane to move it around! Like I said, only good moms have to go through this. Good job, Cathy! I'll cross my fingers for your meeting/evaluation tomorrow. I'm so glad my son isn't in school - it was worse on me than being there myself!

Edited November 2, 2009 by GingerSnap
Getting Older Isn't Necessarily Getting Better - fixing my mistakes

[mscat]

My brother, his foster parents , who raised him , one of my biological brothers , they are the same as your friend. For over 35 years, taking in foster children .They never could have any children of their own. They did adopt a few children of their own. My brother , they could not legally adopt. Our maternal parents fought hard to see that never happened. However, they did raise him , and obtained legal guardionship . This is the same town in which I reside in now. Right where my natural brother is, as well as his family is. I decided to live there. Because I never had a chance to grow up near my biological brother. But, when younger we were the only two that did visit each other. My brother, he does not remember the visits. However, when he was older he remembered comming and seeing me. But, I was in bad shape from a ED . He was naturally thing too, so together, we were quite a pair. LOL.

Now we live in a very small town. I am not close to my "foster" parents . However the foster father he is ok. Checks on us periodily. He does care . They are weathy, retired and travel all over the country. I am just not like them. Never felt like I belong to them, and their was no sense of belonging. Their was always trouble between my foster mother, and she was verbally and emotionally absusive. That I remember. Sad stuff .

About MAtthew , My child. Today is the day, and I am a nervous wreak .I did not think I would be, but it turned out to be so. I could not sleep well. Just a lot on my mind. This is a Neuro Pyschological Evaluation. A in depth one. And it will take hours. I am driving about an hr an a half away by myself. Terrific, wonderful, I hate to drive. my brother , he was going to go , because he did not think I could . But ended up working all this week. I am on my own. I will do fine. I have to, it is for my son.

The appointment was moved up. Because one of the appointments were cancelled . They only schedule 2 a day. That is how long these evaluations take.

The Dr. talks to the parent first, asks about the pregancy and birth all that stuff, than has the child do a series of tests. That is all I know so far.

The Dr. does call the parent in afterwards, so I can ask him prelimilary results, however, I will not know for weeks . Because he has to add up all the tests and results before anything is put togther .

So it is detailed. My son is getting himself ready right now. I want him to look nice. put a undershirt on. He is a big boy. He says he does not have anymore, yeah right. He just does not one to. Here we go. Guess, I'll tell him I will buy him a doughnut for breakfast. That will work. Bribery , goes a long way. Hey , he is in for a long day.

So I'll I need to do is calm down , put gas in my car, and figure out how to get there. I have directions. And sort of have an idea, sort of. I hate being late for appointments. and my child, well he has no idea about time either. He is notorious about making us late . especially when we are trying to get somewhere. Kids !!

[mscat]

I just wanted to update on my child's evaluation. He had it today by a Neurologist Psych. This man is supposed to be very good at what he does, and was from Fresno Fregional Center, traveled a ways to eval. Matthew .

He first talked to me, than ran tests on my son. All my son kept talking about was the same thing over and over , constantly repeating , or "obsessing" over movies , his favorite topic of interest. It is very difficult to get Matthew off that subject. Well the Dr. found out for himself , what I was trying to tell him. However, I did forget to mention one minor detail, Matthew does think the word "poop" is absolutely hilarious as well. Oops, my mistake. WEll the Dr. found out soon enough , rather quickly.

After he finished talking , or trying to test My 16 yr old son, I went back in for a min. to talk to him. The Dr. said my son had autistic disorder .

Gee , now that is a huge surprise , yeah right. Not really . My son has had services many years , and autism has been the foscus of his disabilites , the thing I always had a hard time believing was the cognitive delays. Even the Dr. told me no one knows!!! He does not even know! Because people with austim are so strong in certain areas and than very weak and low in other areas , that it is very difficult to test their IQ's on normal testing.

I wil be getting a full , report on my son's ability's in a while . The hold up is the school. They have to send back the reports back to the Dr. And have not yet. Because my son's regular teacher has been absent all year long.

Honestly, I feel indifferent and a little sad about now hearing from a specialist about the true nature of my child's disability. It is a downer. Even though It has always been there, it does feel like a blow. All over again. He is who he is , and always has been my son. Always will be my kid, and who he is no matter what. Not a stupid label. It just makes it more real, and when that sinks in , it starts to suck.

I HATE LABLES > Not on my son , god damn it. :mad: It is a reality check that I just do not need right now. ok so what if it pissess me off. I'll deal with it.

Nothing can or will change the fact that I love him more than myself or anyone else in this world ever. Fuck it, Screw the fucking labels. That is what I think of it.

Yep , guess I really have a axe to grind after all. Sorry for the ramble . Just been a difficult day.

Autistic disorder> My kid , he has always had this , and now just proven over again , yippie fuckin skippie. Ok I'll stopp> I got to come to terms with this , and chill .

[SweetSue]

Hey cathy

not really with it hun, but i am so with you there, screw the f'ing labels. he is your son and a lovely lad. Labels do not define a person geez we know that of all people. Pm me hun ok . rant to me if you like, you let me sound off to you often enough.

just want to say we are here for you hun, and you have every right to be angry, i know i would be

take care hun

your friend (even if a little doo lally)

sue

[mscat]

OK , well I am ok now, got it out of my system. Sort of Talked to my brother last night, he said , "we know that " ! Talked to my therapist this morning , he said , well we expected this ... Pretty much the same thing. Ok perhaps I am over dramatizing this , however it sucks to hear it from a specialist. It sucks to have it burn it into your heart. Hell, I am his mom, and that is why it bothers me. And this is why I did not want to hear it. Even though it is what it is.

I do not like to believe my child is anything different than anybody else, and when somone comes along who is a professional telling me he is , and has a serious developmental disablity that he has had all his life , it does hurt. It hurts me, thinking irrationally , what did I do? what did I do to my child? How come I did this to him?

What did I do to cause my child to have autistic disorder? Than I hate myself, I hate myself badly , and need to rid of the ugly me. I am filthy, disgusting, terrible, dirty, nasty, horrible, no good, rotted inside. Causing even a child , a human being to be born with a condition for life , chalenged.

Therefore , those things , words that have been spoken are true. Anyway, I am so sad for Matthew. But, that's that. Matthew is ok. He is a lovely child. I am lucky to have him.

Just sad for him , and angry that now he has to carry on this diagnoses for the rest of his life.

[Guest GingerSnap]

mscat: I am sorry that your son has autism and sorry that you think that you caused it. They don't know what causes it. It is nearly an epidemic now. The air, the water, the food supply are all contaminated. And, our government will never admit that they allow all these chemicals, etc. and that they learn or know in the first place that it may or probably will cause harm but $$$$$ and no one cares and they would never admit to poisoning their citizens. It is that corrupt. You may have taken some medication but I doubt they can put their finger on anything because so many children are being born with this and it would not be related to a particular medication and I am sure autism existed before the medication. Don't waste your time on feeling guilty, spend it with your beautiful son and thinking of the future. You are a good mom, good mom, good mom - do you get that? I once cried (and I am not a crier) through a due-process hearing with the school because they said such bad things about my son that it just broke my heart - we lost the hearing but rather then them having "their way" with him (in the lowest functioning class with a tiny, time-out closet that locked) I kept him at home and schooled him myself. So many waste their potential and my son gives 200%, a lot of "normal" people use less than 50% and whine all the time, poor me - they need to get a life or spend a little time with either your son or mine. You are a good mom. You are giving 200%.

[mscat]

Thank you Cathy,

That was very nice . Throughout the years Matthew has always had these austistic like behaviors, always, however, he was not always none verbal, however a delayed talker, and did suffer from echolaia , he would repeat the last few words a person said to him/it was non functional speech. He has had special ED services since the preschool yrs, and ever since. Always under the the austim label and cognitive delays, But, it was up until now at the age of 16 the diagnoses was reaffirmed by a neuropsycholgist. I never even heard of one of thse type of DR's , and had to look it up on the internet. LOL.

A specialist who studies the brain and has a degree in psychology. It is not too much of a big surprise , but to hear it from someone like that, is what is difficult. Because it feels bad.

2 weeks ago , I had to have my psychatrist fill a a couple of forms for our in home support services . WEll I looked at what he wrote. Again , it was the same feeling. He wrote on the prognoses on both my son's paper and mine, as poor> My son has austism , and I have a couple mental illness, among other issues.

It is when it is there , or when a Dr , says something , is when it sucks. I know that is why I felt angry. ANd anther reason why I am not keen on labels .

Thank you so much for your kind words and support, I certainly apreacitate your thoughtfulness.

cathy

[Guest GingerSnap]

I duplicate posted and I have no idea how I managed it.

Edited November 6, 2009 by GingerSnap

[Guest GingerSnap]

Cathy (mscat): Don't let the labels get to you. I substituted as a teacher's aide in a high school in AZ and they all had labels which determined what they were capable of, well, just like with my son, I learned that "approach and attitude" were everything. Sure, they have all these fancy models and they studied a small percentage of the population but actual potential cannot be measured no matter what they think, what they study or what fancy name they have on their diploma. Same thing applies to medical science, they tell someone that you have 3 to 6 months tops to live (this is an actual person I know) well, unlike a good little patient that complies with that (I have known people like this too) they go home, stop medications because they are dying anyway, start to feel better and get determined and now, I was at her house the other day, we are 8 years down the road from her death sentence. They wouldn't teach my son to read, would be hopeless. Well, I thought, you know what I remember reading Dick, Jane, & Sally stuff Run, run, run, See Dick run and thought, he could learn that. Of course, he did. Human potential cannot be measured. I used to drop all those endless documents in the trash and the school would say "Don't you have records?" and I would say "Threw them in the trash because they didn't matter." I am sure they thought my prognosis was poor also. You can only do the best you can do and then you deserve to feel good about yourself. That's the truth according to Cathy - Hey, all Cathy's got it together!

[mscat]

Hey Cathy, I love your attitude thank you ! You have brought a smile to my face today , and that is what I certainly needed. This is so true about labels .

MAtthew , my son , he is most certainly my child fist and foremost, nothing has changed . The world has not stopped , time has not stopped . He is still the same kid. WE will be ok, You know this whole evaluation thing, I was concerned that the diagnoses was going to be mental retardation. This specialized DR. was not going to observe anything about my son, or give my child a diagnoses at all, or believe he was fine.. Now he has a diagnoses , and I am mad ? LOL . I guess with mom's theirs no pleasing us.

I just was not expecting the DR. to come right out like that and tell me rather matter of fact . At least it is over, and everyone keeps telling me we already knew that! Yes , we did, but to hear it from a specialist , come on now, think , what if it were your child , I like my brother to think about it.

Downs syndrome is a difficult one too. My son has been is class with children who have had Downs before.

Is your son medically healthy? I hope so. Most people do not understand what it is like raising special needs kids unless you have one yourself. I know your child is an adult now, however has severe cognitive delays. Matthew has a great friend who is in his 20's that is on a 3 yr old level . This guy is really big, he is verbal , and when matt and Joe get together they have fun .

[Guest GingerSnap]

My son with DS is 23 year old and functions at the pre-school level. His communication skills are very poor. He is medically healthy but has other issues with his behavior, lots of them. We get along since I am just a hair more stubborn than he is so I triumph. He used to be violent. It has been a workout to say the least. We suspect the possibility of other conditions but because of the level of his functioning, there is very little testing that he gets. He goes 6 hours a day to the day center which has about 50 clients. We get supported home care here, funds for that and the parent is allowed to do the care and receive pay based on the "challenges" - you know a million evaluations thing. I get 35 hours a week so there is that concession and if I get to where I can't take it any more:eek:, I can find someone else to do it and the money would go to them. Considered residential but it isn't very good and he can easily be taken advantage of and you know the world today, sad. This is such a challenging time for everyone. So long as he doesn't become physically violent, I will probably keep him at home as when you mentally function as a pre-schooler, well, Mom is really a security thing. He is being treated for an ulcer which caused bleeding, really bad about a month ago - he was passing out and everything - can't put him in residential I don't think. Who can one trust? He is always trying to outsmart me and sometimes he does, more times than I will admit. He is a planner. No one giving my son services likes to see me arrive for a visit, I don't know why. My best, Cathy

[mscat]

I believe nobody knows our kids better than us , our mothers ! we know what our kids need, and how to provide for them the best. What makes them the most happiest, and how to provide the best opportinunity for them to lead them a successul life. it is up to us to make certain we utilize these programs for them , and give them what it takes to lead a happy life .

No mtter how old they become. i may have to move when my son becomes older. because we currently are living in a little town , their are not many services out here. i'll have to move into a bigger city so their are more programs my son can become involved in as an adult.

I have also found out i need to gain legal gaurdionship over hiim once he turns 18 so I can still make decisons for him once he turns an adult. Because of his austism sombody is going to need to be looking after his needs . it ought to be me. not the state, in case anything happens to him, I do not want anything to happen where he is not able to make decisions for himself, and their is not anybody there for him to do that. I need to obtain power of atterney.

I am not expecting to have my son live anywhere else , but with me. As long as I can handle him. He is already a big kid. not even a grown man, but turning into a big person already. taller than me, and he does not know he is stronger than me. when he becomes angry he has trantrums. he bangs on walls and such. Never hurts me though, thankfully.

he rages though. That is something we are all keeping a close eye on. he is easily provoked , mainly because of the lack of communication and social skills. the lack of understanding when someone is just kidding , or not. taking everything literally , and is a very concrete thinker. that is what autistic people do though. He can't help that. This is just the way it is.

Thank you again Cathy

[Guest GingerSnap]

Cathy (mscat): On guardianship, we took that after our son became an adult but learned at that time that if we would have completed the action just before, like a couple of months, that it would have been less involved. Taking guardianship of an adult is more complicated than taking guardianship of your child so you might want to check that out. Sometimes states are different which made it very challenging for us moving so often. My best, Cathy