Who else has a special needs child?

In My Humble Opinion
1

My angel is three and she’s autistic. She is just now learning to talk, just now starting to eat yogurt from a spoon, she has sensory issues which involve mainly oral defensiveness (textures) and her palms, she just learned how to jump off the floor with two feet, and has major sleep issues.

** IT’S SO HARD!!!**
Even though her therapists, doctors, and teachers tell me I’m very lucky that she is a high-functioning autistic… life ain’t easy. I cannot take any thing for granted because even the smallest things are difficult. What’s normal for a typical child is a major mountain to climb for my angel.

I just wondered who else here has a specials needs child. How has it changed your outlook and life goals?

I was devastated at first when the doctors told me my perfect child wasn’t so perfect. It’s a selfish thought and I’ve grown up since then, matured because of that diagnosis. It changes every aspect of your life. But I love my daughter no matter what and I fight for what she needs (trust me, “help” isn’t always helpful).

I have had to change my goals, my expectations, my outlook on everything but it has made me a better person because of it. I no longer get upset or angry with people who don’t know what autism is, I was once ignorant, too. I no longer focus on such shallow things, my world is actually richer for her condition, does that make sense?

I just want some special needs parents to sound off and maybe share your story with the rest of us. Maybe educate or enrich the experience for those who don’t know what that kind of life is like…

2

My special needs “child” is 29 years old now. He’s confined to a wheelchair for outdoor activities, but can get by (marginally) with a walker in his own apartment.

As a parent, this sort of thing never gets any easier. You still bleed for them when you see their contemporaries doing things they can’t do. Sorry I can’t be more upbeat about this, but it sucks.

Maybe on a better day, I’ll relate something more encourging, SS.

Hang in there.

3

Thank you, ** John Carter of Mars**. I know what you mean about “bleeding” for them. I used to imagine her first prom and such, now I just hope she won’t need an aid throughout her school years or stay in a special class. One day at a time, one step at a time…

4

I have a 4 yo boy with autism. I am going through what you are going through. I worry about his future, when his father and I are gone. He has a twin sister and a 7 yo brother.

I’m stressed for the most part about the “today” because to get him more help, I have to keep my job since I carry the insurance. But I really wish I could stay home and go to his school as a one on one aide for him.

I’m going to find a short story that really explains how it feels to some parents to have their future changed, and its done in a whistful, yet positive way. Be right back…

5

This is one of the best explanations for what a parent might feel about having a child with a disibility. I hope this helps someone out there have a better understanding.

WELCOME TO HOLLAND by Emily Pearl Kingsley

I am often asked to describe the experience of raising
a child with
a disability - to try to help people who have not
shared that unique
experience to understand it, to imagine How it would
feel. It’s
like this…

When you’re going to have a baby, it’s like planning a
fabulous
vacation trip - to Italy. You buy a bunch of
guidebooks and make
your wonderful plans. The Coliseum… Michael
Angelo’s David… the
gondolas of Venice. You may learn some handy phrases
in Italian.
It’s all very exciting.

After months of eager anticipation, the day finally
arrives. You
pack your bags and off you go. Several hours later,
the plane
lands. The stewardess comes in and says, “Welcome to
Holland”.

“HOLLAND?!?” you say. “What do you mean, Holland? I
signed up for
Italy! I’m supposed to be in Italy. All my life I’ve
dreamed of
going to Italy.”

“But there’s been a change of plans,” says the
stewardess. “They’ve landed in Holland and there you
must stay.”

The important thing is that you haven’t landed in a
horrible,
disgusting, filthy place full of pestilence, famine
and disease.
It’s just a different place.

So you must go out and buy new guidebooks. And you
must learn a
whole new language. And you will meet a whole new
group of people
you would never have met.

It’s just a different place. It’s slower-paced than
Italy, less
flashy than Italy. But after you’ve been there for a
while and you
catch your breath, you look around and you begin to
notice that
Holland has windmills, Holland has tulips, Holland
even has
Rembrandts.

But everyone you know is busy coming and going from
Italy, and
they’re all bragging about what a wonderful time they
had there.
And for the rest of you life you will say, “Yes,
that’s where I was
supposed to go. That’s where I had planned.”

And the pain of that will never, ever go away because
the loss of
that dream was a very significant loss.

But if you spend you life mourning the fact that you
didn’t go to
Italy, you may never be free to enjoy the very special
and lovely
things about Holland.

6

That is very real… thank you.

7

My only child is a three and half year old son who was born partially deaf in both ears. This was a surprise for us as there is no history of hearing loss in either family, and no obvious medical cause for the condition (it turns out neither is an uncommon situation).

We found out very early because of the screening program in our state. This was good and bad…good because we had time to plan, bad because the screening program was so new there was not much of a support system in place for people in our situation.

It hit my wife especially hard. She was frankly devastated and I think will always mourn what should have been (think “Italy”). I moved on emotionally sooner than she did, but I still wish his life could be easier.

His level of loss is such that hearing aids should help him quite a bit. He is not a candidate for a cochlear implant, his hearing is too good for that. The battle has been getting him to wear the hearing aids…we have had a major victory lately in that he just started preschool and we have insisted he wear them in school…and he has! They are a newer digital model designed for kids, and are translucent neon blue…very cool looking.

The hardest part has been figuring out what path to take with regard to therapies (speech and such) and what school to send him to. Since my wife has been home with him full time from the beginning I have let her take the lead in this area. After a while we realized we couldn’t just blindly do what the “experts” were telling us we HAD to do. It was too much therapy, too much chaos, and too much bureacracy. No one was bothering to listen to us, or to get to know our son.

He could identify all the letters of the alphabet by the time he was two. At two and a half he knew all the corresponding hand signs for the letters and could recite the alphabet. He could count to at least 100, and could count backwards from 60 to 0 (from watching the digital timer in the kitchen). Now he can read simple words. He can understand people speaking to him in a quiet environment without his hearing aids, and most people who meet him are not aware he has a hearing loss.

We have decided to send him to a private Montessori preschool, which has no special acccomodations or experience with kids with hearing loss. It was and continues to be an agonizing decision…we still wonder if we are doing the right thing. The experts would have him in our local school, no doubt with continuing speech therapy and whatever else.

The other hard part is the prognosis on his hearing. In general, people who are born with a hearing loss tend to lose more hearing as they get older. This can happen suddenly and is not necessarily gradual…there can be fairly large changes in a short time. Any loss is irreversible…once you lose hearing ability, it is gone for good. We have been lucky so far, but it could change at any time.

8

My daughter has speech therapy… FINALLY!!!
It took me almost two years to get it, I had to keep bugging everyone. Bugging… as if I was doing something wrong!! I switched one counselor because of her horrible attitude toward my questions.

So what if I ask something twice, I WANT to friggin’ understand!! BITCH… you are gone, idiot. Bring on someone with a clue and a heart.

9

I don’t have a story of my own to relate, but I just wanted to tell you all how much I admire you for taking on such a huge responsibility with an open heart and a positive mindset. Your children may face very strong challenges in life, but rest assured that they have been blessed with amazing parents.

10

Me I wanted to go to Italy and I want to barf every time I see that glurge about Holland ;). Having kids with special needs did not make me a saint unfortunately. You do what you have to do and at times that means you become the Parent from Hell.

I’ve got two boys diagnosed on the autistic spectrum. One of them I’m not sure it’s a right diagnosis but it gets us services. He’s got enough issues going on that it’s a full time job in itself. Last week’s absolutely splendid piece of news <------- sarcasm was that he’s possibly got coeliac disease and we’re now sorting that out.

My younger son is doing very very well after a lot of early intervention and biomedical intervention. We’re doing a gluten free diet and we do a lot of supplements and enzymes. He was non-verbal at 3 and had a lot of autistic behaviours which are now mostly gone.

I’ve learnt over the last 10 years that I am the person who has to live with the decisions we make and that professionals are people I consult for their opinions, not people who are expert on my kids. We’ve been organising my younger son’s school placement for next year this past month and the case manager is driving me nuts. she’s trying to put in place supports which are not needed for my kid – umm he’s autistic, not mentally retarded, we don’t need to practise using a lunchbox for 5 months.

11

Can I second that? I worked with three special needs preschoolers, two little boys with autism, and a little girl with motor and speech delays, so I understand a little what those needs are like. I was constantly amazed by their parents, however. They were great and loveable kids, and though some times things were easy with them, most of the time they were hard. And their parents dealt with it all by themselves the 20 hours of the day we weren’t with them! I know if I brought it up they would have seem surprised, and said that’s what you do for your kids, but it was still awe-inspiring :slight_smile: Maybe that’s why these three who said so little that was meant to connect to us usually talked (or signed) about mom and dad when they communicated at all, lol. They knew they were loved.

12

We got the diagnosis of within the autism spectrum disorder for our daughter on her third birthday. Happy Birthday little bug. I cried over the phone with my cousin, who also has an asd child, for a few hours. Then life had to go on. I knew she still wasn’t allowed to run out into the street or juggle knives and hey, there’s a new list to work on, like don’t let her head-bang on the wall or floor or she might detact her retinas but I still tried to pick my battles. Glad I did too, once I found out what I was up against with the school district. ALmost 3 years later, I’ve finally gotten her into what I think will help her most. My main qualification for the criteria is knowing her, living with her, playing with her and having some sort of rudimentary communication set up. She’s still mostly non-verbal, but she’s very expressive. She’s also working very hard to train her teachers and therapists to do what she wants, rather than letting them set the pace. (Which, lord help me, amuses me to some extent.)
Please don’t take this as ranting. I adore my little daredevil girl who loves her hugs and kisses and positively woships her daddy. In some respects, I worry a little less about her than I do her older brother. Schoolyard taunts won’t bother her. If anyone tries to pick on her, I think she’ll probably knock them down.(Not maliciously, just get them out of HER way. Kind of like she does to her brother.)

Yes, I have a daughter. She’s special. She’s a challenge and a handful.

Email me if you ever need to talk or rant. I do usually get around to answering them eventually.

13

My youngest son (10yrs) was diagnosed with Asperger’s syndrome at 7, my oldest son (25yrs) is somewhere on the autistic spectrum as well but not diagnosed.

Things don’t necessarily get easier as they get older, thats for sure, and my heart bleeds for the older one as he struggles with interpersonal relationships and the organisational challenges of completing a university degree and for the younger as he deals with the daily grind of being different and the pain of being the victim of bullies.

However I wouldn’t swap either of them, they are both wonderfully intelligent beautiful caring human beings, and I have great hopes that they will find peace and happiness on their chosen paths.

The younger one is in a new school where he has a totally individual programme designed to meet his needs both as a gifted child and one with an ASD, and where to date he has had no bullying. He is recieving heaps of support from the SEU and I am feeling very positive about his future prospects in the education system.

14

My heart goes out to all of you, especially SS. I have a 17 YO daughter with CP (mild) and a 19 YO son who is ADD. Dealing with them, especially the boy, has been difficult but nothing like what you all are working with. We just adopted our second Chinese daughter, who has a few problems–we won’t know really until we get her to a doctor.

Best of luck to everyone. Start a thread whenever some kind words would help. This is a great place to vent/commiserate/etc.

15

I’ll third what malkavia said. You guys are truly amazing. Good luck to everyone :slight_smile:

16

No, but I used to be a ‘special needs child’, aka ‘special’. I went to many hearing specialists, a few of who were just in it to make a buck & many speech therapists as a child (none of them knew sign language, nor did the audiologists) & most of the time no one told me what was going on. So I didn’t have a clue & that was a really spooky part.

I no longer refer to the kids as ‘special’ anymore. Why? Because it only seperates them at a time they need to be brought together.

17

My daughter is special needs as well, due to her being 3 1/2 months premature. She is blind in one eye due to ROP and a scarred optic nerve. She also has asthma due to scarring caused by the high frequency vent that she was on for 4 months. Whenever she gets sick it moves right into her lungs and she can’t breathe. We have a nebulizer at home for whenever she needs a breathing treatment, and she is very good at telling me when that is, and taking them- aside for her getting bored after 15 min. Wiggle wiggle wiggle…

She is three now, and aside for the above is a completely normal, happy, and exceedingly energetic little girl.

I am very worried that due to her disabilities the school district (Los Angeles) will place her in slower classes. That is a death sentence for children like her. Just because she is partially sighted dosent mean that she is dumb. So her father and I are going to split the cost of a non-religious private school for her. Frankly, I dont care what it costs. My baby is going to get a good education…you just cant survive in this world with out one.

18

But honestly, we aren’t saints. We do what needs doing to the point of sacrificing our own needs sometimes to get the job done. That’s what you do when you’re a parent of any child. It’s just harder.

I used to hate the blanks looks I got from people who didn’t know what autism was. One lady said, “Your daughter doesn’t look it (autistic).”

Huh? What does autism look like? As far as I know, there is no look to it. Yes, some illnesses have a “look”, you can tell something isn’t typical, some forms of mental retardation have specific features or behaviors. But I tell you what… all these kids are ANGELS!!

They’ll never learn how to hate others, they’re not mean or cruel, they love unconditionally. I’ve been around typical children and some of them are monsters. I’m not blaming parents here, it’s just true. I recently tried to supplement my “income” by watching two kids of some friends of mine. The girl is 3, the boy is 7… OMFG!! These two are spoiled brats!

When I’d go and visit the parents, the kids seemed only a little spoiled but what parent doesn’t spoil their own kids at least a bit? My daughter is needy but not by choice. I know what she needs to learn and to discover and to try. I set the goals for her. These two kids… how can I put this? These two were absolutely whiney, clingy, needy, IMPOSSIBLE! I firmly but gently took the reins and got nothing but tantrums. The little girl was in daycare before and I know she knows how to follow rules, the boy goes to school, same deal.

I don’t know why they turned into monsters but when it started affecting my daughter’s therapies and her behaviors, I put a stop to it. I called the parents after a week of pure hell and quit. I felt bad… I could have used the cash and I thought having some kids around my daughter would be good for her. She likes other kids. This did not work at all. I didn’t like giving my word and then backing out of it, too. I’m not that kind of person.

The two kids did not let my daughter have her therapy without continually coming in to bother her. They were ill-behaved no matter what I said or did. The pinnacle of the problems came to a head when at one point the little boy screamed in my daughter’s face for NO reason. They were sitting on the couch watching cartoons and he just screamed.

My daughter instantly burst into hysterical tears, frightened by this intense scream. I was on the phone with his grandmother at the time since she thought the parents would have been home by then (they were usually late with no calls to me) and she heard him, too. I threw down the phone thinking the boy had done something to my daughter, only to see him laughing about it.

This little joker usually gets into trouble at school; yelling, hitting, back-talking. He gets his privileges taken away every single day! I made him go to his room for scaring the hell out of my daughter and he proceeded to throw around all of his toys and furniture effectively blocking the hallway, yelling and swearing the whole time.

That was the last straw for me. I warned him about his parents finding the hallway like that and he just sat fuming at me. Oh well, you little creep… I’m not watching you anymore, I thought to myself.

I may sound evil or lame BUT I won’t put up with that crap. My friends weren’t happy that I decided to quit and I do feel bad but my daughter comes first. My daughter is so well behaved compared to those two, it’s downright amazing! I didn’t tell my friends my true opinion of their children’s behaviors, no parent likes to hear their kids are total brats. And brats they were! Maybe it’s a case of “my kid is better than yours”, I don’t consciously know. I know the mother is always, ALWAYS saying
how wonderful they are but I have yet to experience it.

Maybe I’m biased but typical isn’t always a good thing. Sure, I want my daughter to have as normal a life as possible but there are so many things to be thankful for.

19

My parents have lived in Holland fo r25 years now.