ISO Crystal Ball Re: My Daughter's Development....

I totally understand. I get stressed when I feel I always have to tell everyone he has autism, for example at the store when the cashier is trying to say hi and he is in his own world or at halloween when he goes door to door (which he loves) but he can't say trick or treat, they don't know and they get anal about a child saying it before they get candy. I do get jealous sometimes, but not selfishly I want the best for him, I want him to be happy. I just keep reminding myself that while I have to deal with his autism and the stresses that come with it, I am sooo grateful that its only autism and not some kind of cancer that I would lose him to completely. He may have a disability but I can wake up everyday and love him the same.

Hi J.,

I am a high school Special Education teacher and I see this/hear this a lot from parents. What you are feeling is completely normal!! It may take you years to go through the grieving process and it is something that you don't "get over" but instead learn to live with and adjust to. I often think others do not know how to respond to parents with a special needs child and end up saying things like they will catch up because they don't know what else to say. That doesnt make it any better for you and your daughter. What I would do is try to educate others when they say those types of things because many people still do not understand what Autisim is and how it works. Kudo's to you for your early intervention because it does make a world of difference. Finding a support group would really help as well. You should talk to your peditricitan and search the web. Focus on what your daughter can do and try to build on that. You will be suprised what she will catch onto as she grows! My students with Autisim make me smile everyday! Hang in there.

Jen

Okay so I am not a parent of child with a disability but was a special education teacher and have worked with many children with Autism...but I will still respond. It sounds like you may need to find a support group or group of moms who also have children with Autism. It will help you to vent, be angry, and to share in the small but meaningful steps your daughter is making but with people who totally get it. I also think it is okay to be angry about typical developing children, internally of course. It sounds like this is a new diagnosis and it will take some time to sink in and it will hurt and you will be angry. It is almost like grieving the loss of a child even though you child is still with you. It sounds like you have taken the steps to work through this with the counseling you are going through. As for others they will give their two cents, they will stare, and they will ask obnoxious questions it is just how people who aren't around others with disabilities act and it sucks but it is what it is. You know your daughter, you love her, and that is all that matters. She will make milestones and make gains but they will be small in comparison to her peers but she (and you) will have put so much effort into that milestone and you will be the proudest parent on the block when she does!! So all in all seek out other parents with children with Autism, take what others say with a grain of salt and then ignore it, and be proud of your daughter and all the wonderful accomplishments that SHE makes!!

Hi J., my son has Sensory issues, but I have a friend
whose son has autism. We are all together in an early
childhood program in our school district. I see her
frustrations as the other kids develop and her son is
still struggling in the 18-24 month skill range. She and I
both joined a support group called PIFFA. Pay It Forward for Autism.

www.piffa.org

The women who facilitate the group are super supportive, open, and have children all over the spectrum. They are
some of the most wonderful people I've ever met. Their
meetings are usually held at Elk Grove Village library, but
you can always contact them via email. Not sure if this
is in your area, but it's worth the drive!

I truly felt empowered by these meetings and it helps to
be around other parents who get it.

Hang in there. You know your daughter better than anyone. I was in counselling a while for my own guilt--even though we have no control over why he has issues. I started while
my son was in EI. Now when anyone asks, I just say that my son needs a little extra bump with his skills and learning
and he's getting the best help possible to develop at
his own pace. He is what he is and I'm blessed and I wouldn't
have it any other way. People that do not have special kids
will never know what it's like to have a special kid. It helps
to be around people who get it, believe me, so you don't feel
like you are crazy or that your child is so different you get
caught up in all that stuff. I would be glad to chat offline.
My email is ____@____.com
Good luck and be strong. Judy

Could be some other kind of water fowl... and not necessarily a duck. :) My son also has a lot of autistic traits, but the pros say that although he has many of the secondary traits, the primary ones aren't there. He is just a very strange and quirky child.
It is hard when other children are talking up a blue streak and their parents want them to be quiet... I would love to have that. I am lucky to get a few words strung together (although he does have the ability to speak in sentences he has only seldom done it).
I also get some who tell me that he will grow out of it, or that he is a "late bloomer". My husband's father was a "late bloomer" and didn't talk until he was 4 or 5, but then, maybe he is Autistic (or Asperger's).
My biggest problem is people who want to label or give me advice. "Maybe you should take him to the doctor" or "has he been evaluated?", as if I don't care about him, as though he hasn't been to the doctor. "Maybe you should get a second opinion" or "my nephew does that and he's Autistic, I think you should get him checked". Autism is the new label.
Although you have been told she has Provisional Autism, it doesn't mean that she has Autism for sure. I looked up the actual diagnosis criteria to double check the two opinions that I got and it is very specific. There must be a reason why they haven't labeled it Autism yet. It just means that you don't know - which can be excruciatingly frustrating.
It sounds bad, but it could be something else, some kind of developmental snag, lead poisoning, or yes, simply a delay that will correct itself...
I guess to those who are overly optomistic, say that you wish with all you know about her and Autism that you wish you could be as optomistic as they are.
Just don't give up... even if it is Autism, they can help so much more than before and they are working on more and better treatments everyday.
Hope you get the support you need, wish I could do/say more to help.

J. W.~

I have an 11, almost 12 y/o son named Noah with autism. He was diagnosed 1 week after he turned 2 y/o. The doctor said that my son was severely affected and would never speak, never learn like other kids and would most likely need full time professional care by the time he was a teen. NONE of that is the case. My son is now just finishing 5th grade,and is communicating 2 yrs behind age lvl. He has sound sensitivities and would rather talk about his interests all the time, but he is talking about so much more than just his basic wants and needs. He has a few close friends and is a computer and video game genius. ( He got a Wii for christmas and beath Super Mario Galaxy in 3 days, he had never played either the Wii or the game before. He also has memorized my credit card # and ordered off Amazon.com when he was 5 y/o)

The point is if I had listened to the doctor who diagnosed him, I would've given up hope. At the time of his diagnosis 1 in every 10,000 children in our country was diagnosed on the autism spectrum, today autism effects 1 in every 150 children in our country. I heard about 6 months ago 1:94 boys in New Jersey are diagnosed autistic.

Almost 10 yrs. into this diagnosis I have a few words of wisdom to pass on :

1. Put away the shoulda, woulda, coulda's they don't help anyone.

2.Celebrate your child's accomplishments no matter how large or small they may seem.

3.Educate others, make a business type card introducing your child, list some of the things that make her unique and special, add a few facts about autism and the # for your local autism society chapter if they have further questions. If you notice someone who is looking strangly at your daughters behaviors or sticking their noses where they don't belong, hand them a card. See how fast they are embarrassed and apologetic for their inappropriate behavior.

4. Patience,love and consistancy. I know that this seems impossible right now, but 10 yrs from now you will look back at your journey and recall that patience,love and consistancy have been your greatest allies.

Having a visual schedule in the home so your child knows what to expect and what is expected of her will help emmensely. I suggest www.do2learn.com for free PECS types picture cards to help with the visual schedule. If you have ANY questions of just need an ear feel free to get in touch.

email ____@____.com
yahoo messanger ID haleigh_anna4u

Good luck, hang in there and know you're not alone.

A.

I KNOW HOW YOU FEEL. My 2 1/2 year old son is autistic. the only advice I have is to get her in therapy, as much therapy that you can find. My son does not talk not one word. but the therapy has helped.

I really hope it's gets better.

A.

Hi J. -- I do wish I could figure it out, how to get even my well meaning friends to stop offering their unsolicited advice about my daughter, now 26 months, who doesn't speak one word (well, if you consider "naaa naaaa" to be no, then she speaks one word), spins in circles incessantly, has this OCD pattern behavior... Friends whose children are 1/2 her age who are talking and behaving normally. The hurt you feel when a well meaning friend triumphantly tells you that her son, aged 16 months, is speaking just great (after you share that your daughter is finally saying "naaa" which you hope means no), which news sends you into some moments of despair, and then you must, simply must, pick yourself back up for the sake of your kids, your sanity -- and this happens over and over. I managed to find a support group online for speech delay that incorporates autism, aspergers, other developmental delays or problems (http://www.speechdelay.com/cgi-bin/ikonboard/forums.cgi?f..., and started my daughter with early intervention (she really has made some great strides in the last 2 months, almost a different person since I've been taught how she needs to play to get results). These things have really helped w/ my grief, with the ever constant trying to figure out what to do to get the scrappy results that I so took for granted w/ my son who is now 3 and is totally normal (so i have someone to compare her to, which is unfair to her and does make it harder on me and her too).

A friend of mine made some joke after my daughter was born very small, she's still tiny, we were in the middle of a birthday party for another friend's son who was turning 5, my "friend" said in response to the comment on how small my daughter was "That's because she did drugs the entire time she was pregnant!" If he had said it w/ a smile on his face or seemed friendly about it, I might have been able to get past it, but i was so shocked that my friend of 10 yrs would say something so cruel, dirty, ugly, horrid, of such an innocent baby, an innocent mommy, in this innocent birthday party scenario. My point of this story is, I don't think he meant any harm by it, but the depth of that hurt was so great... I am still holding a grudge 2 yrs later. I don't know why i still talk to him or his wife. I try to be graceful about it, but really, I think why do I bother...

The irony about that was, his wife (my friend mentioned above) was pregnant at the time and their son was born the same weight as my daughter a few months later. Where his comment came from was so hurtful because most everyone else in the room didn't know me, nobody laughed, am guessing they thought he was as big a boob as i did. Awkward moments by unthinking adults happen to us all, it does take some time and lot of strength to learn to ignore. I'm still learning...

Thing is, there's always this wonderment as to how this could have happened when you think you are doing everything right in your pregnancy. I guess my point is, as w/ all adults we sometimes don't think.

I am sure he was just trying to make a joke and didn't realize the depth of my response, the pain I feel, the grief I still go through when i see my daughter getting stared at in amazement for her wee stature, her lack of words, everyone says "boy she sure is quiet". She doesn't play the same as other kids (instead running in patterns to the tree, to the bench, back to mommy, over and over). She does seem to be growing past it w/ the therapy, but I don't know that she will ever be "normal", and foresee years in special education.

What has helped for me to get past these feelings when other adults wont STFU is the speech delay forum above, talking to parents w/ similar feelings. It does help to feel close w/ other parents, not so alone about it, when your family and friends do not and will never get where you are coming from. I have only one friend who actually does understand, she is a teacher and has helped me immensely w/ my daughter. She is truly an angel.

I am currently pregnant again, 10 weeks, and so afraid there will be some problem w/ our new baby... Maybe i SHOULD do drugs this time to see if this one will turn out normal, ha ha. (yes, i'm kidding).

Anyway, i sure hope you are able to find a group of other parents that you can honestly share your feelings with, and be patient, see that over time there is strength you didnt know you had inside. The counseling will help, but i do think finding like minded parents w/ similar problems helps so much more.

As for those grown ups who don't know when to STFU... that's something we do have to live w/ gracefully. Good luck to you, I sure hope I've helped a little bit. xoxo

I've been there (my son is now 11 years old), and the grief is real, both for you and your husband. It is natural to go through periods of sadness and emotional upheaval. DO NOT LOSE HOPE. Read and educate yourself about the spectrum, and understand that there are parents of autistic and autistic-like children all over who will freely share ideas about what has worked for their kids, advice and encouragement. Find local parents groups through local Austism groups in your area, your hospitals or therapists (Mine goes to the Pediatric Development Center of Advocate Masonic Hospital). I have even found other autistic children with whom he has regular play-dates. My son had been aggressive to me and others until I understood his way of percieving things, and the sensory things that upset him and scared him. As I began to read more and learn more, I slowly and continually introduced to new things at a pace he could understand, with the understanding that some things might ALWAYS be hard for him... and explain to him IN WAYS HE CAN UNDERSTAND about behaviour, rules, and the way the world works. My son does not act "normal" (and who really is?) in the interpretation of the word, but he is a loving, affectionate boy with a great sense of humor, loves animals, and a distinct personality that I will build on to help him be more independent as he grows. He is 360 degrees from what he was years ago. And with encouragement and assistance matched to her strengths and skills, your daughter will, too. Best wishes to you and your journey.

Oh my gosh J., do we have alot in common. My son was just diagnosed a couple months ago with a seizure disorder, but we were looking for Autism. I have known this since he turned 3. He will be 5 in April. He goes to Hope Wall in Aurora and it is a special needs school. He started right when he turned 3. Anyhow, I feel all of what you do. I mean, everything you said, made me tear up and shake my head, because I KNOW! The last appt with the Neuro said she believe he has PPD (pervasive develepmental disorder), and SI (sensory integration). PPD is on the autism spectrum and like Aspergers is high functioning, PPD is in the middle of the very large spectrum. We got a perscription from her and her dictations to send to school for OT and he does get pt now privately and speech at school. We also got a scritp for dev therapy too so they can evaluate and then the formal diagnosis will be done. Plesae feel free to private message me if you would like to talk about this more. It is nice to have someone to talk to, and someone who knows and espeically with the kids the same age too. Where do you live? I live in Aurora.

S. Bailey CLD
Aurora
www.tendermomentsdoula.com

I don't know much about autism, but I do remember a line from a poem written by the brother of a child with autism: "He may come and he may stay; but he'll always stay his way." I think that's good advice. It means you have to take your kid where he/she is at, and the way they are, which sometimes means blowing off or closing your ears to others' comments. Actually it's what we should all do with all of our kids; you, of course, have a special reason for having to do so. You sound strong - strong enough to admit how much it hurts. Don't lose that, and don't let it overcome you, either.

J.,

I just want to let you know first off I am not a parent of a child with Autism. But I have friends with children that have Autism. They are Blessed to have children at all. Yes I see my friends going through hard times. Days that are up and down and you are spinning and don't know how to stop. Even when I am with them in public I hear what others say about her children and it hurts me so much and they are not even my children. I have approached a few of the "adults" and said "This wonderful mother is doing the best she can with her child, She is blessed to be able to have children, It is not the childs fault that she is "not normal" and what the heck is normal anyways??" After letting the "adult" know that they were just making fun of a 3 yr old lil' girl and she could not defend herself That "adult" went and sat and talked with the child and cried because of the things that they had said to and about her. I am not saying that I went about this right. But some good came out of this. I don't know if you believe that God gives you what you can handle. But please believe that God gave you a child a wonderful child to cherish and love and protect. Look into your childs eyes and see the love that she has for you and she looks up at you and loves you with all of her heart. You are her safety net in life. You are her comfort zone.

Let her know that there are a lot of "adults" that don't understand and are not willing to understand what is going on medically with her. But there are "adults" out there that do understand and will cherish her as much as you do. Children can also be mean. But there are ones out there that will love her just as much as a "normal" child. I hate to use those terms ("normal") because no one knows what "normal" really is.

J. just remember when there are people out there in the world that are mean and say hateful things to you or about or to your daughter just look at your daughter and just think to yourself that you are so blessed to have an very special angel in your life.

I hope this helps you understand that we can not change all the mean and hateful and cruel people out there but there are a lot of people that really do care also.

J.,

If you can find the key to getting people to STFU and mind their own business, bottle it and sell it. No matter what you do as a parent, ignorant people will make their stupid comments, ask dumb questions and overall just cause you to question yourself all the time. (As if we don't do that enough as it is.)

You have a special situation on your hands and I can only imagine the emotions that have gone through you from the first time you realized that a milestone wasn't met on time. I know how I felt when my son crawled late (10 months) and walked late (15 months). I know how I felt when EVERY time my MIL would call she would ask, "Is he crawling yet?" and then, "Is he walking yet?" Seriously, I wanted to tell her to STFU! Instead, I stopped answering the phone when she called (love caller ID).

But, But, But, I can sit here and say whatever I want and it won't mean jack. I'm not in your situation. I don't know how you feel. I think you should connect with some parents that have similar situations. They are the ones that will truly understand. They are the ones less likely to say the stupid, hurtful things because they know.

I suffered two miscarriages (one a girl at 12 weeks). After my loss, I found myself reaching out to those who had experienced the same. People who haven't experienced the loss of a pregnancy don't know how it feels. It's not their fault, it's just true. And, God, I gotta tell ya, people say some really stupid things. If I heard one more time, "It's God's way." "The baby wasn't healthy." or "It wasn't meant to be." I didn't even want to hear the kind words from my closest friend at the time...who's son is 1 month older than my daughter would have been. I didn't shut my friends out exactly, but I needed to go where I found comfort.

As with all of us, you are on a twisty, hilly road in parenthood. Your road just has some extra bumps on it and maybe a few more dead ends. But, you'll hit those bumps and recover, find those dead ends and turn around to find another way. You'll adapt. You'll succeed because you're a Mother.

I truly wish you success and strength and I hope you can find the support that you need.

---
T.

I think the first thing you need to do is to drop the label "autie kids" and really look at kids without the labels. Please try to look at your child in a very positive light and observe her very closely and start appreciating her for what she brings to your life. I can only imagine what it is like to find out that your child has autism, even when doctors and experts say it may be borderline. I have been involved with children with autism as a teacher and not as a parent. It's good that you are seeking help and support. There are various help out there for children who have autism and their families. I think it's good to join a parent group, so you have others to talk to. And it's good that you are on the right track.

Hi J.,
I'm sorry to hear what you're going through.
I have very little knowledge of autism.

Do have a friend who's son is 5 weeks older than my dd. Dd is almost 18 months and her son doesn't say but mama and the Dr told her of his concerns.
I have another friend who told me she was so frustrated with that girls "obsession" that kids speak at different times. I was so upset, I told her until she heard that from a Dr she'd NEVER inderstand her "obsession" or concern.
It really turned me off to her friendship - How can anyone be so freaking insensitive?????
I am sure I've been guilty of saying dumb things.
I am sorry for your pain. I can not say I even imagine and it's always in the back of my head, my kids are 17 months and 6 months.

I have read up a little on what to look for and I feel like I am dropping into an abyss when I see something that concerns me.
I hope you can find a strong support group. If women unite we can be so strong - instead of judging one another.

I couldn't have children for many many yrs and I my sister would bring me to playdates to hang out with her, and lunches where they all had a bunch of kids... I finally told her I could no longer do it, it hurt so bad. So I can relate to you when you say how hard it is to be around or hear of another childs development.

I hope you can find some peace in the midst of this.

M