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RE: Parents of special needs kids - 8/13/2009 12:51:29 PM

sirsholly

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quote:

ORIGINAL: lusciouslips19

Also wanted to mention. You will get an IEP(individual education plan) when he goes to school. They should have a department that they can sart assesing him as early as 3 so you can get a jump on him in the school system. I would start now. For my boy I visited the department in charge of that as it was next to his preschool program. Lets face it, we all know when something is different about our kid. I was easily able to get him in a half day of diagnostic preschool classes, followed by a diagnostic kindergarten class. But first grade he went to regular class as he was already mainstreamed for reading and math easily. I do miss the extra help he got and the small class sizes of the diagnostic classes but hes really smart and with some extra resource help, your child can thrive too.

great advice, Lushy

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RE: Parents of special needs kids - 8/13/2009 12:53:42 PM

sirsholly

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quote:

ORIGINAL: lusciouslips19

If it wasnt for me advocating, setting up meetings and searching for doctors nothing would have happened positive for my son. His father would have stuck his head in the sand thinking the great god-son creature was perfect in every way. He would have been like that kid in school in one of my sons classes that really needed help but whos parents never had him evaluated.

How did you keep from getting overwhelmed by the responsibility?

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RE: Parents of special needs kids - 8/13/2009 12:56:50 PM

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0_0

Many checkboxes are checked.

I thought of my past childhood experiences as well. I have decent motor skills, though, so I am very lucky.

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RE: Parents of special needs kids - 8/13/2009 9:24:18 PM

lusciouslips19

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quote:

ORIGINAL: sirsholly

quote:

ORIGINAL: lusciouslips19

If it wasnt for me advocating, setting up meetings and searching for doctors nothing would have happened positive for my son. His father would have stuck his head in the sand thinking the great god-son creature was perfect in every way. He would have been like that kid in school in one of my sons classes that really needed help but whos parents never had him evaluated.

How did you keep from getting overwhelmed by the responsibility?

He was in a good preschool program that was a full day. It was very regimented which is good for Autistic type kids. I did know from early on that he did better with a schedule. His father is an involved father and I am able to be out and get respite and really being Asperger he is happy doing independant things. Also the center that his preschool was in was where all the school department places were located. Head start and special services. So it was really easy to talk to someone about how to get him evaluated and by then the teachers and I knew he had some sensory issues and trouble with transitioning from one thing to the next. They determined he qualified for special classes and bt kindergarten he was still in a diagnostic class. He was being evaluated by socuial worker, school psychologist, Occupational therapist and other teachers. They also brought in an Asperger specialist as they suspected it. Early on they transitioned him for regular reading and then math. So just because your child is on the Autistic Spectrum(as is Aspergers), it doesnt mean he isnt smart as a whip! And dont be afraid of meds. My son thanked me for helping him think better. I think we started his first med when he was 4 or 5.

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RE: Parents of special needs kids - 8/15/2009 1:21:36 AM

sirsholly

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Lushy...thats not what i meant. It is good that you got time away from him for your own sanity...but i mean how did you not go insane with the responsibility of the choices you had to make? And this is really a question for anyone...not just the LusciousOne. The choices/decisions made will effect them for the rest of their lives and it is very frightening to me right now.

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RE: Parents of special needs kids - 8/15/2009 9:36:19 AM

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Holly - you have to do the best with the information that you have. You can't second guess your self or look back and go "I wish I hadn't done that" or " wish I had done this".

It doesn't help anything to do the second guessing thing - it just paralyses you, and you can't do anything because you are so afraid of doing something wrong.
We as parents and humans mess up all the time, and as humans we need to give ourselves permission to.

I can look back at how i dealt with my kids and there are several things i would like to have done differently - but at the time, it was the best i could do. For that matter , it was the best i could do with the services that were offered at that time.

Unfortunately the only place that perfection is standard is in heaven. And i am pretty sure that we aren't there yet. So for the time being go with your gut, make the best choices you can, and don't try to second guess yourself unless there is a real advantage to it. And most of the time there isn't . Let yourself be human, and realise that one bad decision isn't going to condemn your um to be less than he could be. Especially when he has a parent that actually cares about him and what he could be.

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RE: Parents of special needs kids - 8/15/2009 9:45:25 AM

cornflakegirl

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quote:

ORIGINAL: sirsholly
how did you not go insane with the responsibility of the choices you had to make?... The choices/decisions made will effect them for the rest of their lives and it is very frightening to me right now.

It is rather terrifying. I have a special needs kid who has come a long way but, holy shit, does he have a long way to go. If I screw it up, I could set him on the path to juvi, to jail, to a lifetime of strife and difficulty. So I do my best and I hang out with other parents who are doing their best and try to learn from them and I constantly repeat my slightly tweaked version of the serenity prayer:

I have the strength to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

We can't change who our kids are or remove their struggles, but we can do our level best to give them a hand up. After that, we just have to see how it all comes out and hope for the best.

By the way, is um code for underage minor? Or something else?

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RE: Parents of special needs kids - 8/15/2009 10:26:18 AM

purepleasure

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holly, most of the challenges are very similar to raising normal kids. Keep in mind, that when he turns 18, if LO is unable to make informed and safe decisions of his well being, you will have to have yourself or someone else appointed as his guardian. But, that's down the road, and no need to worry about that for now.

In the meantime, love him, nurture him, and do the best with what you've got, as you've been doing all along. Don't be afraid to ask for help if you need it. Depending on the severity of his "differences" (I say that, because much of the time our special needs kids are very able, they just go about accomplishing it differently), he could qualify for Social Security benefits. I'm not sure what your part of PA has to offer, but over on this side of the state, there's alot of programs that my brother qualifies for. He has a GREAT psychiatrist, and our GP is very on board with wanting to help me keep him in our home as long as possible.

Personally, I think he's doing better now, since our mother passed away, than when she was alive. Too often she did not want to acknowledge that he needed more support that what we could give on our own. He (and I) have alot of support, including respite care.

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RE: Parents of special needs kids - 8/15/2009 10:35:31 AM

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quote:

Depending on the severity of his "differences" (I say that, because much of the time our special needs kids are very able, they just go about accomplishing it differently),

I love this!! Thank you Peaches

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RE: Parents of special needs kids - 8/15/2009 10:39:48 AM

sirsholly

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quote:

Holly - you have to do the best with the information that you have. You can't second guess your self or look back and go "I wish I hadn't done that" or " wish I had done this".

quote:

I constantly repeat my slightly tweaked version of the serenity prayer:

I have the strength to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

Thank you Kiwi and Cornflake...such good advice

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RE: Parents of special needs kids - 8/15/2009 12:22:59 PM

LadyHibiscus

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WHEW!! I haven't been on the computer much the last few days.... Mr Smarties hit it severely lucky getting you for a new mom! Whether you will be feeling so lucky, I dunno... but you RULE, Rain!

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RE: Parents of special needs kids - 8/15/2009 12:31:42 PM

lilgirl2008

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Sirs Holly,
I would definately get him evaluated...but make sure you go to someone who is qualified in that area. ADHD is too often thrown around when it could very well be something else. There are a host of other disorders, which present themselves with extreme aggitation or defiance. And sometimes ADHD medication can make those matters worse. It isn't too often they medicate a 3 yr old for ADHD etiher. Usually they cannot even diagnose true ADHD until after the age of 6. All 3 yr old little boys have a great deal of energy. So if you are seeing other things like violence, defiance, it might not be ADHD. I would suggest getting him evaluated by a psychiatrist and a nuropych Dr.

Good luck...been there done that. Mine is now 11.

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RE: Parents of special needs kids - 8/15/2009 12:40:13 PM

sirsholly

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quote:

ORIGINAL: lilgirl2008

Sirs Holly,
I would definately get him evaluated...but make sure you go to someone who is qualified in that area. ADHD is too often thrown around when it could very well be something else. There are a host of other disorders, which present themselves with extreme aggitation or defiance. And sometimes ADHD medication can make those matters worse. It isn't too often they medicate a 3 yr old for ADHD etiher. Usually they cannot even diagnose true ADHD until after the age of 6. All 3 yr old little boys have a great deal of energy. So if you are seeing other things like violence, defiance, it might not be ADHD. I would suggest getting him evaluated by a psychiatrist and a nuropych Dr.

Good luck...been there done that. Mine is now 11.

thank you lilgirl. We are in the process of getting a second opinion with another psychologist. The Neuro-Psych has to be a referral via our pediatrician and he wants to wait until we are done and have a diagnosis.

Your input and experience are so valuable to those of us that are just starting out with our special blessings. I hope you post here often!

< Message edited by sirsholly -- 8/15/2009 1:20:02 PM >

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RE: Parents of special needs kids - 8/15/2009 12:41:38 PM

lusciouslips19

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Well the best I could do was move was move from chicago to a better school district that put more resources into education. The property taxes are awful here because Northwestern pays nada and they own quite a bit of property. Then I got him evaluated through the district and services in his school setting. I did get him some extra OT when I could afford it. But I can only do so much. My sister is wealthy and has been able to supplementt her son with extra speech therapy and her district is richer so she gets even more minutes of resource time. My district has a more diverse population and more at lower economic rung so, The money has to go farther. He has a psychologist he sees at school, a social worker and a speech therapist. His teachers have mostly been very good and the school is one of the best in the states with their test scores. I can drive myself mad, especially when i am critisized by my sisters because he needs more speech or this or that. He stutters seomtimes, he processes different. I think hell be fine and I refused to feel guilty about what I cant do when i do everything i can to make sure he is happy and stable. Thats all you can do.

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RE: Parents of special needs kids - 8/15/2009 12:41:48 PM

lilgirl2008

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quote:

ORIGINAL: lusciouslips19

quote:

ORIGINAL: sirsholly

quote:

ORIGINAL: lusciouslips19

If it wasnt for me advocating, setting up meetings and searching for doctors nothing would have happened positive for my son. His father would have stuck his head in the sand thinking the great god-son creature was perfect in every way. He would have been like that kid in school in one of my sons classes that really needed help but whos parents never had him evaluated.

How did you keep from getting overwhelmed by the responsibility?

He was in a good preschool program that was a full day. It was very regimented which is good for Autistic type kids. I did know from early on that he did better with a schedule. His father is an involved father and I am able to be out and get respite and really being Asperger he is happy doing independant things. Also the center that his preschool was in was where all the school department places were located. Head start and special services. So it was really easy to talk to someone about how to get him evaluated and by then the teachers and I knew he had some sensory issues and trouble with transitioning from one thing to the next. They determined he qualified for special classes and bt kindergarten he was still in a diagnostic class. He was being evaluated by socuial worker, school psychologist, Occupational therapist and other teachers. They also brought in an Asperger specialist as they suspected it. Early on they transitioned him for regular reading and then math. So just because your child is on the Autistic Spectrum(as is Aspergers), it doesnt mean he isnt smart as a whip! And dont be afraid of meds. My son thanked me for helping him think better. I think we started his first med when he was 4 or 5.

luscious lips,

As I am sure you know, but this is more for the other people out there, most Aspergers kids are extremely intelligent. Even gifted. My own son deals with Aspergers and ADHD, it has been quite an experience. As a parent you do the best that you can do. You get them the help that they need. Fight the school district if you have to. Remember you have rights. Find out what those rights are in your state. Each state does have different laws regarding children and education. Meds or no meds? It is a personal choice. I didn't do meds for a very long time, until my very very smart little boy started failing school. He just couldn't concentrate. It was the best thing for him in the end. Am I afraid of the choices I am making for my son? No, I have confidence I am doing all that I can do to make him the best person he can be. Am i perfect? Heck no. I make mistakes all the time. The most important thing is that your children feel loved, in spite of their challenges/ That is what we call them...challenges. I try to tell my son everyday that I am proud of him. He feels so beat down by the rest of the word, he doesn't need it from me as well. I am a strict parent. I have rules he has to follow and I don't cave into him. But at the end of the day I tell him he is loved and that I am proud. It really is the best that we can do.

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RE: Parents of special needs kids - 8/15/2009 12:48:14 PM

lilgirl2008

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quote:

ORIGINAL: sirsholly

quote:

ORIGINAL: lilgirl2008

Sirs Holly,
I would definately get him evaluated...but make sure you go to someone who is qualified in that area. ADHD is too often thrown around when it could very well be something else. There are a host of other disorders, which present themselves with extreme aggitation or defiance. And sometimes ADHD medication can make those matters worse. It isn't too often they medicate a 3 yr old for ADHD etiher. Usually they cannot even diagnose true ADHD until after the age of 6. All 3 yr old little boys have a great deal of energy. So if you are seeing other things like violence, defiance, it might not be ADHD. I would suggest getting him evaluated by a psychiatrist and a nuropych Dr.

Good luck...been there done that. Mine is now 11.

thank you lilgirl. We are in the process of getting a second opinion with another psychologist. The Neuro-Psych has to be a referral via our pediatrician and he wants to wait until we are done and have a diagnosis.

Your input and experience is so valuable to those of us that are just starting out with our special blessings. I hope you post here often!

Sirs Holly,

Oh I am glad to help anyone in any way. I wish I had people out there to help me when I started going thru this. For me it was a stumble along as I go process. I will look as to what state you are in, and if i have any phone numbers or resources in your area I will email them to you.

I look back to when my own lil guy was 3 and how sometimes I would get so frustrated with him, with the lack of help, that I would just want to give up. Keep in there!! You are doing great. Follow your instincts and always remember you know your child way better then any Dr does. or psychologist. One of the things that helped me greatly was a local support group once you have a diagnosis, and also family therapy. The therapy really taught me how to dicipline a special needs child...because he didn't respond to conventional ways.

I really hope this helps, and if you have any other questions feel free to ask.

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RE: Parents of special needs kids - 8/15/2009 1:03:45 PM

LadyJulieAnn

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quote:

ORIGINAL: sirsholly

quote:

ORIGINAL: lusciouslips19

Also wanted to mention. You will get an IEP(individual education plan) when he goes to school. They should have a department that they can sart assesing him as early as 3 so you can get a jump on him in the school system. I would start now. For my boy I visited the department in charge of that as it was next to his preschool program. Lets face it, we all know when something is different about our kid. I was easily able to get him in a half day of diagnostic preschool classes, followed by a diagnostic kindergarten class. But first grade he went to regular class as he was already mainstreamed for reading and math easily. I do miss the extra help he got and the small class sizes of the diagnostic classes but hes really smart and with some extra resource help, your child can thrive too.

great advice, Lushy

I would also like to add to this by mentioning Early Intervention Programs (I apologize if this was mentioned already). Parents often know when something isn't right, even from birth. Early Intervention Programs are available to evaluate and treat kids birth to 3 years old, and also provide transitioning into the preschool programs. It's a valuable resource to families who need support, services, or just need reassurance.

This is a great thread!

Julie

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RE: Parents of special needs kids - 8/15/2009 1:49:19 PM

lusciouslips19

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That is so true. My son was always falling and bumping into things. The slower developing motor control. Yes, by starting at age 3 you will be getting a jump on things!

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RE: Parents of special needs kids - 8/15/2009 1:51:26 PM

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The milder autistic spectrum disorders usually arent caught so early. My son was always developing with in normal range. Usually they start being noticed at 2, 3 and 4.

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RE: Parents of special needs kids - 8/15/2009 2:09:37 PM

lilgirl2008

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quote:

ORIGINAL: sirsholly

quote:

ORIGINAL: Rainfire

The main one was there..... he denies what he heard her say. How can you change someone like that?

God!!! You are me!

When The LO was refusing to eat solids at 18 months the doctor sat right in front of us and said he is on the verge of hospitalizing him. Treatment began at a feeding disorders clinic within days but the LO's dad swears that if i had just left the kid alone, he would have begun to eat on his own. He also denies the doctor ever said the LO needed to be hospitalized.

Rain...you cannot force anyone to pull their head out of the sand and end the denial. All you can do is drag them to the appointments with you and get as much in writing as possible.

You are Mr Smarties advocate right now, and the only one he has. I hate to say this, but sometimes you have to leave dad in the dust to do what is best for the child. And i do know this from experience. The LO's dad was in such deep denial about the SID and the need for intervention that i told him if he tried to stand in my way i would take the baby and leave.

There is so much for me to comment on this thread I don't even know where to start. Ok. I have two sons. One was diagnosed with Aspergers and ADHD, the other was diagnosed at a very young age with SID, ro SPD (sensory processeing Disorder). He would refuse to eat anything. The textures of things would make him gag and throw up. Everyone areound me just said....oh he will eat eventally. No he wouldn't. It got to the point that they were going to put a feeding tube in him. Eventaully I was able to get him the help he needed from an OT and from a speech pathologist. But at that time the Drs knew so little about this disorder, it really was me searching and asking and knocking down as many doors as I could. He has other challenges as well as far as sensory things. Hearing, touch, etc.

Both of my sons, now 11 and 9 do not qualify for an IEP because they do not have any developmental delays. Which is great except that when the older one started having problems in school, there wasn't much I could do. Until I found out about something called a 504 plan. At least that is what it is called in illinois. It is not the same as an IEP. My children are in regular classrooms. This 504 plan allows the teacher to make certain accomadations based on a medical diagnosis. For example because the older one has trouble taking tests, he is allowed more time to take tests. Because of his ADHD and sesnory issues as well, he is given sensory breaks during the day that would not normally be allowed. Those are just two examples. He has quite a few more.
With the younger one, the one with SPD, we have not pursued any 504 plan because so far he is managing is school just fine. As long as he is doing well, and we made adjustments at home for his challenges, I think everything will be ok.

\We didn't go thru any social workers. WIth the younger one I went thru Easter Seals when he was 15 months old and had him evaluated. Because he had a speech delay and the SPD he was given early intervention serviced. With the older one I didn't get a formal diagnosis until a couple years ago when he started having problems in school. I took him to a psychologist, and she recommended a psychiatrist who made the diagnosis. It was confirmed when he went to the nuro psych Dr. That was the process we went thru. I am sure it can vary from state to state. I did very little with the school until I had a diagnosis. They were less then cooperative. That was probably my most frustrating part. They see these children as bright, but don't understand with Aspergers the social aspect and how that can greatly affect their learning.

I don't reveal so much about my personal life, but I am touched by this topic deeply, and I hope that by telling my story maybe it can help someone else.

with blessings.

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