Topic : Raising a Special Needs Child

Hi my name is Tammi, I have a 4 yr old son who was diagnosed with PDD 2 yrs ago.  We have done therapy in the home and full day emotional handicap classroom and is finally beginning to talk.  My son (Nicholas) has NOT slept through the night since he was born!  We may get 1 night a month (if we are lucky)  He is up every hour.  We live in a state that we are FAR from all of our family, so it is just my husband, my 15 yr old son and myself.  Although Nicholas goes to school full time, he may make it once or twice a week.  Due to not sleeping at night , And we have been seeing specialist(s) for stomach problems (since birth) (chronic diarrhea & stomach pains)  We still have not been able to find a doctor to help fix this problem.  The only thing we found out is that he is Fructose intolerant.  (yeah fun, try to find things that do not have it) With his sensory issues Nicholas does not eat ANYTHING, in his life he has never eaten any kind of meat, chicken, pasta, veggies.  Nicholas lives on PB&J!!!!!  And we still have the same stomach problems.  We are trying to find a doctor that can help!  If anyone knows of a great doctor please help us.

Thanks for listening.

My son was diagnosed with PDD when he was 2, he is now 4 and we have done therapy at home and full day emotionally handicap pre-k.  His talking has come along way but behavior has not.  We have a few OK days and then we have alot of days that are just not good.  As someone else stated your sister may be able to apply for ssi/disability depending on her income (they go but what you make) (doesn't make much sense to me though)  As for the insurance yes she was lucky to get help with somethings.  I hate the fact that because this is a neurological issue, it is considered NOT medically needed.  Like the brain is not one of the most important parts of the body!  I don't get it.  But that is how they all look at it, if you have a problem with your heart not working correctly you go to the hospital and get it fixed, but if you have a problem with your brain not working correctly, they cant help.

As you can tell, I know the frustration that everyone is going through!!

Good luck to all!

I hope that I can make a little sense. I have adopted three wonderful children. I was note told that their were special needs. I and my husband for the last six years have dealt with our son whom has full FAS.  oUR DAUGHTER HAS THE BEHAVIORAL PART OF THE SPECTURM AND THE NEW BABY THAT IS THREE HAS THE AUTISTIC PART OF THE SPECTRUM. hERE i AM DEALING WITH A SCHOOL SYSTEM THAT DOES NOT WANT TO RECOGNIZE THE FACT THAT MY SON HAS fAS. They want him to be in a normal classroom and stay caught up with the rest of the kids. It will not happen. Because my husband and I went to a school that has a TIME OUT box, and saw what a self contined unit really is. We went to the news with this and now to the state legislature trying to get a bill passed that says these things are ilegal.I will write more later. I have been way traumatized by this and will write later Thank you .

My daughter is 26 years old.  She has CP, agenisis corpus collasum, and short gut syndrome.  Her mental age is about 12-18 months.  She does not speak but coos, laughs, cries, gestures and on occasion, screams and yells.

When she experimented with tantrums, I found that washing her face with a cold wet washcloth distracted her out of the tantrum.  Now, if she is truly in pain, the wet washcloth will not distract her and then we focus on finding the source of the pain - which can be impossible.  Just like "normals" special needs people's health changes over time.  We just went through 18 months of trips to the ER to diagnose extreme abdominal pain and ruled out a physical cause.  That left hormonal as in thyroid.  We now get complete blood chemistry labs every 3-4 months to try and stay on top of the situation.  Also, remember to get conservatorship when your child turns 18 years old so that you can continue to have the authority to make medical and life decisions for your child.

I saw this topic on Dr. Phil and I had to reply.. My Husband and I have 4 children .. But 2 of the children have special needs My oldest son he's 13 has Austim and my 9 year old Daughter also has Austim.. My 11 year old son is in specialist classes cause of speech and his motor skills being slow.. Now my youngest Daughter she's 7 is in regular classes..

 

Back when  my son was a baby.. We've noticed that something wasn't right with his growth cause you see I have a brother who is 4 months older then my son and so my son should have been right behind him with doing all thoses baby things. But he wasn't so we got him started with test after test and we really didn't know what was going on with him until he was 4 years of age when they finally said your son is Autistic.. Now this was over 11 years ago back then Austim wasn't well known as it was today. So I had to do alot of reading on the internet and library just to try and find out what this was..

 

When my second Son was born He was born with a clubbed foot that were the foot is turned inward almost looks like its broken.. so we got him started at the same school as my older son just for Physical Therapy cause he was in cast until he was 5 months old. Again we started noticing how he was slower then most kids with his speech and everthing he was just slower.

So we started the process of getting him tested but they told us that he's got a slow fine motor skills & his speech is slow.

 

My 9 Year old Daughter we just really got them to say what her father and I have known for awhile was that she too was Autistic..

 

My Biggest Fear as a parent is wiether or not theses kids are going to be able to be on their own when they are adults. That haunts my dreams at night.. and It worries me to no end..

 

 

 

Hi tklawton,

I read your question and I had to answer.. I too have two autistic children mine are 13 and 9 now but I remember when my son was 4 and he'd act up I couldn't tell if it was his Autism or just a tantrum. But this is what I would do, If your 4 year old act up weather its a Tantrum or Autism treat it the same way  in a crowd cause this has happen to us as well, when she starts to act up pick her up gently and hold her and just walk her out of where ever you are, some times the noise really upsets them and their senses go into over drive and  like us we can control that but they can't. So take her out of where ever you are and has you walk out with her whisper in her ear. sing her favorite song to her rub her back

 

Also When ever my son or daughter starts to stem? like get overly excited and start  jumping around, waving his arms.. I use a very key word and it helps.. I tell them to "COOL IT" in a very stern voice but not scary..

 

No no don't let her stay home.. do little trips first you know like only go out for say 20 mins, then go home, then the next time you wish to go out make alittle bit longer. Bring along a toy that she enjoys with her like a stuffed animal or something..

 

Also WE had to do this for my daughter she is afraid of any loud noises so we bought a pair if Headphones for her to wear if it gets too noisy. you can get them at home depot for like 12 dollars..

I hope that helps a bit.. If you need any more help please let me know.. I'm in your shoes..

God Bless,

ladymac1861

 Hi I hope someone out there reads this and can give me some advice.

     I have a bueatiful doghter who is 10. She has had problems in school sence her very first day. Anyway she develop normal so they said. I had trauma when I was in labor that coused her heart rate as well as my own to drop so had an emrgance c-section anyway I lost 75 of my blood was hemrgeing already and she had the corde wraped around her neck 2. So they say thats what coused her to be mildly mently retareted. We just found out for shure a few months ago. Even though we have excpected this, we just found out. On top of this she has juvinol diabetes, which she has been dieignoced about 2 yrs now. She has realy bad tantrums, she has lied big time, she  manipulates. I take with her Dr about all this and this is what he said " you need to see a case worker counciler for youself so u can get the saport u need, with a child with all these issues is going to be dificult. Each issue comes with it own set of emotional problems , and add emotions from your divorve and all this, Ride it out. Sounds like u have all the tools." WHAT DOES THAT MEAN?????  Oh yea right before she got sick with diabetes me and my ex ( her father) got devorced. dr said the emotions from the devorce should have been resolved by now but becouce of her disabilties there not. I have a hard time with this becouse know in my family knows what to do. so anyone have any advice on how I can help her be the best that she can be now and when she is grown please do tell. And how do I stop the fits??? help please someone. blynn.

I was really touched when i read ur post. There are few reasons why I wanted to reply 2 ur post:

 

1) I have 2 kids, twin boys, who were hospitalised b4 when they were 9-10 months old. they had measles & were both diagnosed with seizure disorder. i was a single parent that time and it was tough coz one of my kids was on the 2nd floor & d other was on 3rd floor. I had to go up & down all d time. Good some of my friends & my mother helped come to visit fm time to time so i can go have 3 hrs sleep or have shower or buy d things we need in hospital. i know my situation is different fm yours. i guess, i can relate to u coz i've also seen what my kids went through... 1st hand. we were in a public hospital in a 3rd world country... i had to be there to mind d kids all day since there weren't enough staff in a crowded hospital (no airconditioning, i can't even remember if they gave us free medicines at all) where nurses are not nice & can yell at u anytime they want. they had to do a test on my kids, i can't remember what it's called but i can describe it to you. they had to inject a needle in their spine to take a sample (which i don't know what's for). they told me d test was important and is very delicate. if not done properly, it can paralyzed my kids (as far as i can remember that's what d doctor said). it was heartbreaking that my little babies had 2 go thru that. what's worse was i should be there. not that i don't want to... i wanted to be there 2 know that everything's ok but i need to be d one 2 hold them while it's being done. everytime i recall this, i breakdown & cry.  when i was pregnant with my little girl & was due in few wks... i could hardly sleep. i was so scared of d pain that i had 2 go thru when i give birth. every single nite i cry & cry coz i was so scared. the only thing i can associate with PAIN was when my boys had that test... i keep remembering how they cried  and i keep seeing the look on their faces everytime i close my eyes... it was like a videotape bein played in my head over & over again.

 

2) grandparents suffer too. it crushes their heart to see their son/daughter & their grandchild/ren go thru. one time my son had a really bad fit, my mom was cryin. after the fit. my mom hugged my son and said, why does this have to happen to the 2 of u? then she turned to me and said, why do u need to go thru all these? i just put my arms around her, with tears in my eyes but smiling, and said, u should be happy that im d one goin thru this, if it's one of my sisters, maybe they couldn't handle it. i believe im d toughest (emotionally) in d family that's why im happier that it's happening to me than my sisters.

 

3) i always get that question too... how do u do it? and most of d time i get questions about my kids condition and try 2 tell them... they're not really interested or they don't really care. they're just asking for d sake of it! i get a lot of questions fm other people too like... why can't ur kids settle down (they're hyperactive) or why can't ur kids answer my question (they got severe expressive & receptive language delay) d fact that i already told em all that about my kids!

 

4) last but not the least, it's because of this...

If you would like get some things off your chest please feel free to respond. I want to help you along the way anyway that I can.

 

thanx coz finally i got it off my chest. yah, u did help me. i feel so much better. sometimes it's good 2 know too that you're not d only one goin thru some challenges in life. i hope u know what i mean. and it's nice that d fact that this experience is hard 4 u, it doesn't stop u fm wanting 2 help other people in the way u can. i guess sometimes, just because we're going thru rough times with the things happening 2 our kids, people forget that we can help too, that it's not like we'll always be d one needing help.

 

have a wonderful day. my prayers are with u & ur family.

 

 

4)  

Greetings to all of you.

 

  This is a new year and there are so many paths you can take to help your child.  I have worked with many children challenged with autism.  At first through a nonprofit agency and now  I am introduced to parents or parents see me out and about with a child and introduce themselves to me.  I always work with children one on one.  I want to encourage you.  It does take an enormous amout of parience, energy and creativity.  I hope you have help.  If ABA doesn't work maybe Son Raise or the PECS method does.  What ever it is that reaches your child, it's worth the hard work.  Don't forget to take care of your emotional needs, too.

 

One of the things I have learned is each child is so different and what may work for them hasn't be discovered yet.  It may take creating a game that gets their interest.  I once started working witrh a 4 year old boy who only said numbers. After my first visit I went home an created a simple game using numbers.  It required no speaking.  He went from speaking only numbers to a 7 word sentance.  And now (2 years later) I happily introducing concepts to him such as "Smart choices virses nonsmart choices.  Yes really. 

 

As I said each child is so different.  Some have a hrd time using the muscles around their mouth then of course they need oral motor stimulation and a speach therapist.

 

My opinion is all the children know more then they appear to.  Many have strong receptive skills (understand so much) but can't express what they would like (expressive skills).

 

I live in Manhattan and would like to find another child to work with.  My strength is helping children socialize.  I love it.  I find it helps to be sensitive to the "teachable moment."

I have been fortunate enough to work for parents who are very dedicated to cleaning up the childs diet.  And I'm sure that make a big difference.

 

My

 

It is so much easier to speak to someone who understands what you have experienced. I too have met those individual who really don’t care; they would rather you waste your breath explaining the situation and for them to answer with oh… and they change the subject with complete disregard.

 

I know coping with my daughter’s condition has in one sense has made me a bitter but yet a better person for the most part when it comes to parents who don’t give a crap what happens to their children.  

 

When I was pregnant with my both of my children I did everything in my power not to put them in harms way and create the most perfectly healthy child. For instance, I quite smoking, I did not by any means consume any alcohol or anything that would harm them. I would not even eat in a restaurant if it allowed smoking in the dinning area or take Tylenol for a headache.  

 

So… You could say when I see a pregnant woman smoking or doing something everyone knows she should not be doing while pregnant.  I now am the big mouth in the restaurant that will not hesitate to tell the pregnant woman how stupid, and self centered she is for smoking or anything to that effect. Chances are she will have a healthy baby and the next time she becomes pregnant she will smoke with it as well. It is so sad to see mothers take advantage of their healthy children but… they may not fully understand what comes along with a child that has complications.  As my mother has always said “God only gives special babies to special people. Not everyone can care for a special baby” and I truly believe special babies go to those with a mentality to handle the situation.