Special Needs Children

McLoki

Just wondering if there are any other parents of special needs children out there in Polk land. Children are doing fine, but at times it would be nice to talk to other parents going though it. Between tests, therapy, schools and Day Cares it just grates on you at times...

Anyway - just wondering.

Michael

schwarcw

Hi Michael! Thee are a lot of good support groups on this very subject. I'm sure you can locate one in your area. I think these groups can be very helpful. You'll find a lot of people in these groups that can be going through the same situation as you. By no means are you alone! Good luck

George Grand

It can seem daunting if you don't have a super-understanding employer. Imagine if you were a single parent trying to accomplish it. Almost impossible.

George Grand

Let your child be your inspiration. You think you've got it hard? How about him or her? The simplest tasks that we perform and take for granted can be so terribly difficult for them to accomplish. Celebrate their accomplishments with them every day, and every night.

schwarcw

George Grand wrote:

Let your child be your inspiration. You think you've got it hard? How about him or her? The simplest tasks that we perform and take for granted can be so terribly difficult for them to accomplish. Celebrate their accomplishments with them every day, and every night.

Great words of wisdom! A lesson for us all!

Carl

RuSsMaN

I can't imagine dealing with it, EVERY day - or worse yet, having a disability myself.

Kudos to those that do, and I mean that. Kind of redifines (for me), and gives REAL meaning to life and love and sacrifice. I haven't been faced with it myself, I only hope I'm a big enough man to do so, when and if.

Cheers,
Russ

tonyb

McLoki wrote:

Just wondering if there are any other parents of special needs children out there in Polk land. Children are doing fine, but at times it would be nice to talk to other parents going though it. Between tests, therapy, schools and Day Cares it just grates on you at times...

Anyway - just wondering.

Michael

Admire anyone who is going thru this.Amazeing how strong we can be
when we have to.Sounds like you need a break,as most do when life starts pounding on you.Try and take a day to yourself and do something fun,just for you.Clear your head.Be strong.What ever you need,just ask.:)

rhulett

We are blessed with a 7 year old boy born with Down's Syndrome. We've gone through open heart at 3 months to repair 3 holes in his heart, eye surgery to correct crossed eyes, and numerous minor procedures. We are very fortunate though, because we have a child who is very self sufcient.

The parents who have children who need 24 hour care are my hereos. Those people get up each and every day, and take care their child unconditionally. Not sure of circumstances McLoki, but god only gives you what you can handle.
Rob

Strong Bad

My heart goes out to those children! Those kids didn't ask for those problems. I see them and realize how fortunate I am. On the other side, I sort of feel like I could be helping in some kind of way, perhaps a community service type of thing.

The thing that really hits me are the terminally ill kids. The Johns Hopkins Childrens Center is here in Baltimore and cares for them. I always meant to see if they allow people to come in and donate time to assisting in anything.

This post may be the thing that gets me off my ****!

Bravo to the parents that put in nothing less than 100% to care for them!


John

McLoki

I have been blessed with 2 children.

The oldest, Morgan, is 6 and she started speech therapy at 2.5 years old. (Speech delay) She is finishing her first year of kindergarten and has been falling further and further behind all year. She has recently been diagnosed with PDD (Pervasive Developmental Disorder). It is on the autistic spectrum, but her issues are not broad or all encompassing enough to be labeled as autistic.

My youngest, Kameron, is 4.5 years old and started speech therapy when he was 1.5 (had almost no verbalizing at that time). At 2 he was diagnosed with moderate autism. At the time he was seeing 4-5 therapists per week. (Speech, occupational, physical, developmental and one other I can’t remember) At 3, as with Morgan, he was transitioned into the school district for all therapy. He is doing really well and has improved a lot. He is starting to use basic sentences (still mainly one word descriptions) – for an autistic child, any speech at all is a truly a blessing.

Getting into the groove of day to day life is really not that big an issue, - therapy sessions, IEP (individualized Education Plan) meetings, school (both kids attend the local public school – Morgan in full day Kindergarten and Kameron attends a 1/2 day Early Intervention class), daycare, Doctor evaluations, etc. It is really not much more than the parent of any NT (Neuro-Typical) child would deal with between daycare, school, sports, and other activities.

Both kids are great and I would say can, in a limited way, be described by their issues, but not defined by them. As a parent the stressing part is the future. When my son was diagnosed at 2 we were told that he would never speak, never be able to live on his own nor hold a job, and will probably have to be institutionalized and made a ward of the state. I considered it a pretty astounding roadmap for a kids life considering it was made after ½ hour of observing a 2 year old play with legos.

Looking at my children I still see a world of potential for them, but the more research I do the harder the road ahead looks. This seems to be at least one case where it is important to strike a balance between enough knowledge to keep opportunities open and enough ignorance to not roadblock success. – that is the balance I am currently struggling with.

No reply is needed – I just needed to say it….

Michael

faster100

I really feel for you,
and whom ever gave you that bleek outlook for your baby at 2 should be shot.. truth or not, being optimistic is the best cure sometimes..

Have faith in your future with your 2 children, Kids are stronger then us adults..

George Grand

In 1988 at the age of 2 1/2 years, my wife and I took custody of our beautiful niece Tiffany. We knew something was drastically wrong, but had no idea what the problem really was. At 3 1/2 she was diagnosed with Rett Syndrome, a terrible neurological disorder that by all standard tests, does not allow the child to progress mentally past the age of about 24 months tops. Managed to teach her how to walk on her own two feet, and for a short while we got single syllable type utterances as well. Other than those small blessings she required supervision in every waking moment. She was absolutely beautiful. Early adulthood is about the life expectancy of these beautiful girls, and Tiffany made it to the age of 20. She went to sleep last October 16th, and did not wake up. I hope with every bit of my heart that she did not suffer at all as we slept only 15 feet away. Her neurologist assured me that "respiratory arrest" makes for a peaceful demise. If asleep, she just stayed asleep. If awake, her breathing just got shallower and shallower until she passed out and left us. She had a very peaceful look on her face when I found her at 5 A.M., and her eyes were closed. She did not appear to be someone that was struggling for air, she just looked like she was asleep. The night before was absolutely magical as far as the fun we had together, and after the nightly ritual of singing "Twinkle,Twinkle Little Star" to her and tucking her in, the last words she heard on this earth were "When you fall asleepy sleep, don't forget your daddy loves you very much." The same words she heard every night as long as I was home and not out on the road with the airplanes.

God sent Tiffany to ME to make me a better person, and I hope I didn't disappoint. The 17 1/2 years that she graced us were the finest years of my life. Some days are a little better than others, but she still pervades every moment that my mind is not occupied with work or my other daughter Stephie, and I can't put into words the amount I miss her smile, her laugh, the way she smelled.

Make sure you are constantly telling your children that you love them. Big hugs and kisses too.

Skynut

I certainly have respect for those who raise special need kids.
I don't think I could handle it but I have never been in that position.
I have watched my friend raise his austistic child and I did not know he had it in him either.

It takes great inner strength and I am always impressed by the people that can do it.

polrbehr

My heart goes out to you both, Mc and GG.
My 6 year old daughter was also diagnosed with PDD/Autism at 2 years old, and we've been dealing with it ever since. She has her good days and bad, mostly good, TG. The terms EI, IEP, CSE, etc. all hold meaning for us.
We are all too familiar with the words sacrifice and patience. Not being able to sleep after working a late tour because she just couldn't get on the school bus this morning, or the aghast stares of people in the store wondering why she just had to leave the store kicking and screaming and crying because something on the shelf "set her off".
I am not looking for sympathy or kudos here... I just want to reinforce to Mc
that he's definitely not alone.

And my hat's off to you, George. Not many have the inner strength to do what you did.

SCompRacer

We couldn't have children of our own so we adopted a nine year old girl back in '85 that was labeled special needs placement by DCFS. I met her while I was manager on loan to United Way. She had been badly abused and was taken from her mother at the age of six. After 14 unsuccessful foster home placements, we took her in. She came to us with a shopping bag containing all her worldly possessions, a case of head lice, and a scary list of psychological problems.

There were some difficult times raising her, and it was expensive getting her the best psychological help to deal with the emotional pain. But she is 30 now and recently relocated to another State with a good job. Intimate relationships are still a problem for her so we don’t know if there will ever be a son in law.

Our story had a happy ending, but some special needs children require lifetime care, or don’t get much lifetime at all. It takes dedicated parents to raise them, and I admire that.

George Grand

You all got lucky the day Rose came into your life SComp. You da man.

Must be something special about shopping bags, that's how Tiff arrived here also.

Thank you Polrbehr. Good luck with YOUR beautiful girl my friend.

schwarcw

I always thought there is a special place in Heaven for small children with special needs who never have the opportunity to grow up, or have to battle grave illnesses and pass at a young age. I also believe there is a special place for the parents of these children, who take in these abondoned children, take care of them unselfishly, love them, show them as much life as they possible. That special place is with their children. My hats off to you George, McLoi, polrbehr, Rich and all you other parents who struggle with these challenges everyday.

I thank God every day for my children and the blessings of a strong body and mind. I hope all of us never forget or take forgranted our loved ones!

Carl

Mike682

I respect parents who have special needs kids.

I work with special education kids during the day. Each student has his/her unique needs and abilities. Balancing these needs in a classroom can be challenging, but what keeps me going is those smiling faces when they stand tall and proud because they did well and learned something new.

.Jon

I know a few in my high school, A kid named brian in my gym class. I always try to make myself part of his day by saying hi and making sure hes alright. I he ever doesent understand something that were doing I make sure he gets it and i help him out with it. I think special needs people are some of the best because they are the nicest, forgiving people out there. Dont judge at all, dont hate, and are just very nice.

George Grand

Tiff was classified as "profoundly" retarded. ****. The day after that session with the "professionals", I woke up because she was on my side of the bed bashing me in the head. She knew what she wanted (me to wake up), where to find it (climb out of her bed and walk into our bedroom), and how to do it (bash me in the head). Profoundly retarded my ****.

Where you at on The Island Mike? I hear you on the challenging. Tiff was in a class with 6 other Rett girls. That poor teacher. Even with an aide their hands were real full. I'd go in there and each girl was going in a different direction, some laughing, some screaming, couple falling asleep. Pisses me off that Barry Bonds and other thugs make millions and people that enhance lives make almost nothing (in the big scheme of things).

Mike682

George Grand wrote:

Tiff was classified as "profoundly" retarded. ****. The day after that session with the "professionals", I woke up because she was on my side of the bed bashing me in the head. She knew what she wanted (me to wake up), where to find it (climb out of her bed and walk into our bedroom), and how to do it (bash me in the head). Profoundly retarded my ****.

Where you at on The Island Mike? I hear you on the challenging. Tiff was in a class with 6 other Rett girls. That poor teacher. Even with an aide their hands were real full. I'd go in there and each girl was going in a different direction, some laughing, some screaming, couple falling asleep. Pisses me off that Barry Bonds and other thugs make millions and people that enhance lives make almost nothing (in the big scheme of things).

Our class has 7 kids. Most have mild retardation with IQs between mid 50's and low 80's. The kid with the lowest IQ can do simple multiplication w/out a calculator where another will need a calc to perform simple arithmetic but is an excellent reader.

I am fairly new to this area (my grad research was not in abnormal psychology) but I quickly learned that just because a person is labeled retarded, it does not mean they are not good at anything. You have to find their strengths and build on them

mrbigbluelight

....reading your posts really reminds a parent to let their kids know they are loved.

My wish for you who do have special need kids would be that the "Big Guy Upstairs" would let you see what seeds you have sown, and what has grown from those seeds.

George, you wrote "God sent Tiffany to ME to make me a better person, and I hope I didn't disappoint.". It is terrific insight on your part to recognize it as such and, if I may add, I'm sure you didn't disappoint.

Again, there aren't enough words to express what needs to be said, so I'll merely leave it at , "God bless you, and your children".