Moms of Autistic Children

lilyinlove

Hey. I'm a mom of an Aspie. They didn't recognize this until he started school at the age of 4. I always knew he was different. He has a twin brother who is the total opposite to him. I have no idea what age is too early to diagnose. I think it's a lot to do with our parental instinct. If you feel you need help then ask for it.

I couldn't imagine our lives without him. He is the funniest kid on earth to us.

Anyway, just wanted to let you know you're not alone out there. There are a lot of supportive websites who can point you on the right path for help.

dolly3186

Jackson is my 9 year old. He was diagnosed with PDD-NOS at 2 1/2. At 12 months he wasn't really talking. By 2 he was getting informal services which increased with his diagnosis. He is now going into 4th grade. He was the lead in the 3rd grade play last year. He is in chorus, played community soccer, and takes gymnastics. He didn't really talk until 4 and now we have to beg him to be quiet. Early intervention is the key!!! He has his challenges but the early therapy will help tremendously!!!

Feel free to friend me.

Thank you for this. It's so inspiring to hear such nice stories like your son's. He sounds like he has made excellent progress. That's wonderful! My son currenly has no words or babbling whatsoever, but I am hopeful.

I just want what's best for him and I want him to be able to go to school, have friends, etc. I guess I'm just overwhelmed right now. So much is being thrown at me all at once.

Also - thank you to everyone who has replied to this thread so far. You have no idea how nice it is to hear from other moms/parents or people who know someone with autism. It gives me hope that my son will be able to function and have a relatively "normal" life...

My son is scheduled for an evaluation next month with a specialist, so I'm waiting to see how that goes. I'll make sure I let everyone know.

He has been making progress. I make sure I work and play with him every day. We got a new game, it's this elephant that blows these balls up in the air. I was so excited because my son loves it! Most toys he doesn't care for. He finds pieces of the toy that he likes (such as a tag on a stuffed animal etc) and won't play properly with most toys. Last night he was chasing after the balls and actually putting them in the elephant's ears and they were blowing out of its trunk! It was so exciting to me and great to watch...to see your child actually PLAY with a toy was so amazing.

Thank you everyone again for your thoughts, comments, etc. You guys honestly have no idea how much it means to me.

dmpizza

My son is in the autistic spectrum.
15 months is early, but testing never hurt anyone.
If your child is diagnosed as requiring services(sometimes called "classified"), then by law, your school district will provide services for your child. We had a therapist from the school come to our home.
Best of luck and ask any questions of me if you want.

Erisad

Thank you! I've ordered some books and am working on getting more knowledge about the subject. It's only been three days since I heard the news and I'm still processing everything.

I know I shouldn't feel completely devastated but i can't help it. It seems like all I've done the past three days is cry all day long. How can I get myself out of this funk?

I know he's the same little boy that I've loved since birth...why am I feeling so completely horrible?

You're worried about his future, which is completely normal. You just gotta realize that your child may be different from the others and find ways to cater to some of his needs. You may need special ed or IEP (Individualized Education Plans) and believe me, he won't be alone. I was the only one with Asperger's in my high school but I ran into at least 4-5 more in college. The diagnosis is becoming more common so he should be able to find people like himself.

lynheff

My granddaughter is 9 now and severely autistic. First, 15 months is not too early to begin treatment for ANY learning delay. The earlier the better. Her mother has written a practical "how to" book on how she helped her daughter through the early years and how she got her ready for school. The book is called "Autism by Hand" and is available from Amazon in both paper and ebook format. I hope it helps you. prayers and hugs for you and your son.

macpatti

Mom to an amazing 12 year old boy with autism here! Our son didn't start speaking until he was 4. It's great that doctors are able to start seeing signs and testing earlier and earlier. I understand feeling helpless and "crushed" at first, especially because your son is so young. Our son didn't get officially diagnosed until he was in 3rd grade. Once we got the diagnosis, we were actually relieved to finally understand what was going on.

David is high functioning, but severely deficient in his social skills. He receives behavioral therapy, social therapy, speech therapy, and group therapy with others with learning differences. You'll be amazed at the amount of support you'll get!

Let us know if you have any questions!

lynheff

I will be a support so add me to your list. :flowerforyou:

phatnotfat81

Hi everyone!

I'm 26 years old and could really use some support. Maybe I'll find someone on here that's going through the same issues.

My son is 15 months old and he's been seeing Early Intervention because he isn't speaking yet. The woman we've been seeing had a meeting with me last night and told me she's seeing "red flags" for autism.

I'm at a loss and don't know what to do. I feel like my world is crumbling down around me and could really use some support. Are there other moms out there that can shed some light/hope?

Also - what are everyone's thoughts on diagnosis? Doesn't 15 months old seem a little early to be even suggesting autism?

Going through the same thing..my son is 2.5yrs old and his dr said he's showing signs of autism. Actually he said that around 15 months. The first thing he did was had his hearing checked. Sometimes kids who are delayed in speech aren't hearing well or at all. So start there. Anyways, my son can definitely hear, so he's been receiving speech therapy for several months now (2X) a week, and is really improving. He's playing, smiling, laughing, making eye contact, waving and saying bye-bye..saying a whole lot more now. It still sounds like a foreign language at times but nonetheless, he's trying! At first he was having issues socializing with other people. I put him in daycare as well (been almost a year) and he's beginning to play with the other kids a whole lot. As a matter of fact, the speech therapists who see him all say they think he's only delayed in speech and they believe the doctor may have assumed too early.

So hang in there. Early intervention is key even if he is or isn't autistic. Get him in speech therapy anyways and try to socialize him with other kids and people as much as possible. It truly helps!

dolly3186

Mom to an amazing 12 year old boy with autism here! Our son didn't start speaking until he was 4. It's great that doctors are able to start seeing signs and testing earlier and earlier. I understand feeling helpless and "crushed" at first, especially because your son is so young. Our son didn't get officially diagnosed until he was in 3rd grade. Once we got the diagnosis, we were actually relieved to finally understand what was going on.

David is high functioning, but severely deficient in his social skills. He receives behavioral therapy, social therapy, speech therapy, and group therapy with others with learning differences. You'll be amazed at the amount of support you'll get!

Let us know if you have any questions!

Thank you! I've been hearing lots and lots of people say that their children didn't speak until 3 or 4 or even later. That's good news for me, so there is hope! Just because my son isn't speaking now doesn't mean he won't ever speak, thank goodness. I just want to hear his little voice!

I am already getting bombarded with the amount of support my state offers. Thankfully I live in a good state that has excellent autism programs, most of which are covered by my insurance. I have heard horror stories about people having to pay thousands and thousands of dollars out of pocket to get their children into different therapies and programs. I could never afford that at this time.

dolly3186

I don't know if this is "taboo" or whatever with autistic parents...

Has anyone tried to GFCF diet? I have been reading everything and anything I can about autism and that particular diet seems to come up a lot.

My son's early intervention therapist told me it's a bunch of crap basically and that it doesn't work. I've read testimonials from parents saying it does help their children.

I'm interested to see everyone's opinions on this. Have you tried it? Did it make a difference? Or is it just a bunch of baloney?

macpatti

Thank you! I've been hearing lots and lots of people say that their children didn't speak until 3 or 4 or even later. That's good news for me, so there is hope! Just because my son isn't speaking now doesn't mean he won't ever speak, thank goodness. I just want to hear his little voice!

Well, David didn't start speaking until 4 but now he rarely shuts up! We love it. The other day he told us that he remembers when he couldn't speak. He said in his mind he WAS speaking and didn't realize that what was coming out was just moans and grunts. He said it was very frustrating. Every once in a while he'll grunt and think he told us something, but is now old enough to understand he didn't really say any words.

Other signs to look for that David has:

Trouble making and keeping eye contact (For some children with autism, seeing and hearing at the same time can be too much stimulation. They will look away so they can focus on listening to what's being said. We were told not to scold him and say, "Look at me when I'm talking to you")

"Twitches" that he'll switch up. He will flap his hands, make different facial expressions, roll his eyeballs in certain figures (last month was the figure 8), and sometimes he'll make grunting noises.

Getting obssessed with things. Right now it's Legos, but it's been a certain shirt, oragami, drawing Sonic and Halo, etc. When he's obssessed, he can't go more than a minute without talking about those things.

My favorite: He has no filter. He will say whatever is on his mind and it's usually hilarious! (we do have to teach him what's appropriate to say to people, though)

What state do you live in?

macpatti

I don't know if this is "taboo" or whatever with autistic parents...
Has anyone tried to GFCF diet? I have been reading everything and anything I can about autism and that particular diet seems to come up a lot.
My son's early intervention therapist told me it's a bunch of crap basically and that it doesn't work. I've read testimonials from parents saying it does help their children.
I'm interested to see everyone's opinions on this. Have you tried it? Did it make a difference? Or is it just a bunch of baloney?

We've tried the different diets, and for David, they made no difference.

Erisad

I don't know if this is "taboo" or whatever with autistic parents...

Has anyone tried to GFCF diet? I have been reading everything and anything I can about autism and that particular diet seems to come up a lot.

My son's early intervention therapist told me it's a bunch of crap basically and that it doesn't work. I've read testimonials from parents saying it does help their children.

I'm interested to see everyone's opinions on this. Have you tried it? Did it make a difference? Or is it just a bunch of baloney?

I'm not sure, it may help some kids more than others. I love my dairy so cutting back on the casein would be hard. Although it does make my face break out. >.<

dolly3186

Thank you! I've been hearing lots and lots of people say that their children didn't speak until 3 or 4 or even later. That's good news for me, so there is hope! Just because my son isn't speaking now doesn't mean he won't ever speak, thank goodness. I just want to hear his little voice!

Well, David didn't start speaking until 4 but now he rarely shuts up! We love it. The other day he told us that he remembers when he couldn't speak. He said in his mind he WAS speaking and didn't realize that what was coming out was just moans and grunts. He said it was very frustrating. Every once in a while he'll grunt and think he told us something, but is now old enough to understand he didn't really say any words.

Other signs to look for that David has:

Trouble making and keeping eye contact (For some children with autism, seeing and hearing at the same time can be too much stimulation. They will look away so they can focus on listening to what's being said. We were told not to scold him and say, "Look at me when I'm talking to you")

"Twitches" that he'll switch up. He will flap his hands, make different facial expressions, roll his eyeballs in certain figures (last month was the figure 8), and sometimes he'll make grunting noises.

Getting obssessed with things. Right now it's Legos, but it's been a certain shirt, oragami, drawing Sonic and Halo, etc. When he's obssessed, he can't go more than a minute without talking about those things.

My favorite: He has no filter. He will say whatever is on his mind and it's usually hilarious! (we do have to teach him what's appropriate to say to people, though)

What state do you live in?

My son has really good eye contact, so I'm really glad about that. The main concern of mine is that he "stims" a lot with certain objects. He will find a tag on a blanket or a small piece of string and will repeatedly flick it or scratch it with his left hand. He does it all the time. I'm not sure if I should discourage it or not. It seems to relax him and it's not hurting him. He screams bloody murder if I take the string or whatever it is off of him. I usually just let him do it.

You son sounds amazing! Thanks for your thoughts about the diet. I've been getting mixed answers about it depending on who I ask.

Also - I live in Massachusetts.

spicypepper

I haven't read all of the replies...

my 12 year old son has asperger's (as well as ADHD and anxiety). I knew when he was a tiny infant that something was "different"about him. He was verbal and cuddly (inside the family) but had SERIOUS stranger issues. He didn't speak to outsiders until he was about 4... and then only when coached... and still he often doesn't, although he will say "I have aspergers and I don't like to speak much"...

when he was four I began investigating and decided that autism fit all of his symptoms... I had to leave my husband in order to get him the help he needs (among other reasons but... the care my kids needed was the main reason)...

since his actual diagnosis (at 8) we have been through multiple rounds of family therapy, empathy training, desensitizing therapy, emotion training (he is so cute when he comes up to you and says "I sense I have disturbed your emotions" and puts his hand on your shoulder). we have been through multiple bouts of INTENSE therapy (like three and four times a week for two or three hours at a time)

when he was first diagnosed he would have episodes where he was so overwhelmed that he would curl up into a ball and just shut down... multiple times a week... he was suspended 20 times (in a year) for almost 40 days...

he has not had an episode of shutting down in more than a year... he knows to say "I am feeling overwhelmed and I need a time out" and most of the time the school accepts it...

he is on a good combination of medicines (anti anxiety and adhd)....

he is very inciteful and I can ask him "how does ____ affect you" and he can tell me "this makes me anxious" or "I am worried about having an accident" or whatever... he can tell me "I don't like to go bike riding on new trails because the motion is too much input and it grinds my brain like hornets, but I will go if I can wear my big eyesunglasses"...

I am more and more coming ot have hope that he can be a functioning member of adult society!


I reccommend "you can't make me but I can be pursuaded" (http://www.amazon.com/You-Cant-Make-Persuaded-Strong-Willed/dp/1578561930) and "autism's hidden blessings" (http://www.autismshiddenblessings.com/) and "autism speaks" (http://www.autismspeaks.org/)

it is never too soon to get intervention... it will help you and him and help you be a better parent because even if he doesn't have autism you can learn valuable parenting skills (not to say you aren't a good parent... but NO ONE is a perfect parent and we ALL can learn skills)


good luck dear... it is a hard burden to bear... but it is completely bearable... and there is support!

I could have written the first half of your post. We just found out that our 7.5 year old has Aspergers Syndrome. In fact, just got the formal diagnosis last Wednesday and we now start the medical testing to rule out brain issues and the like.

When my son was about 2, I knew something was different about him. He was my 3rd child. I mentioned to my husband that I had this inkling that he was autistic, but I knew that wasn't the case entirely. He is highly intelligent, very emotional, but socially awkward. he didn't speak in sentences until he was 3.5 and then he would only speak to his immediate family. I can remember a moment when we were with my mother in law and she was talking about something that peaked his interest. He rambled out a garbled sentence that ended with dummy head.

School has been very trying for him and for us. He just wants to be left alone. Tell him what to do, show him how to do it and he'll do fine if he's left alone. When he was around 3 and he and I would go grocery shopping together, he would scream at the top of his lungs if a stranger came down the same isle as us. That's when I had my first real big thought about autism.

Last year at school they put him in a peer to peer group because they thought he had anger management issues. When he had his moments where he wanted to be alone and they would force him to interact with others, he'd ball up his fists, grunt and scream and cry. He did however have a little girl in his class that he clings to and calmed him down. So much so that the teacher learned to put them next to each other because he was a lot more relaxed around her. He even calls her his girlfriend. I'm secretly hoping she's in his class this next year.

All that being said, we discovered through all of this that my husband (who is 47) also suffers from Aspergers syndrome. Both my husband and our son are very high functioning, but the similarities between them is uncanny. My son has a sensitivity to noise and my husbands is light. They are both very intelligent and very much into routines. They latch onto a subject and learn everything they possible can about it. We've always joked that my husband was a walking encyclopedia. Now I know why.

OP: For Aspergers, they typically don't diagnose until they're around 2 years of age. However, if you suspect that your son might have Autism at such an early age, I'd check into it. I will tell you that I have 5 children and they have all started talking at different stages in their lives (well the older 4, the youngest is just barely 3 months old).

My 4th child didn't start really talking until he was 2.5-3 years old and then full on sentences until he was closer to 3. He's 3 years 2 months old now and you can understand about 3/4 of his sentence structure and you can piece it together; but I can tell you without a doubt that he doesn't have Aspergers or Autism. Totally different functioning child. His brother above him is the one who does. My oldest has a very light case, she's extremely high functioning but does exhibit signs. She was talking by 13 months as was my oldest son.

So, point of my post is to give your kiddo some time. Everyone does things on their own level at their own time. Just because the books, or your friends kids did it at a certain time; doesn't mean that your kiddo will be any different.

Tangerine302

I don't know a lot about Autism, but wanted to wish you and your son all the best! It's good they are looking into things now though. It sounds like it's to everyone's advantage to see if there is something they need to be doing early on. Like I said, I don't know a lot about Autism but I remember my girlfriend in high school that worked at a childrens care facility. She would take one or two kids out for lunch or to her house to spend time. I would go with her and I always remembered that neither of the kids would give eye contact. It was like they were looking right through you. I'm sure each child is different, but it's good that your little boy has the eye contact.

I'm sure right now it's something you weren't expecting to hear, but if he does or doesn't have something going on with him, he will still be your sweet little boy that you will always love! I remember reading about a family in the newspaper. He's a doctor in our town and his wife was talking about their little boy. I remember she said that's what makes him who he is. He wouldn't be "Devin" if he didn't have Autism. It was as if just to say that he has Autism just as he has brown hair. I hope you are able to find out what is going on. Hugs to you!

godblessourhome

my oldest son was diagnosed with asperger's when he was 3. i knew something was wrong about a year before that. he had about 18 words at his 18 month well-check and lost them; he only had 10 words at his 2 year appointment. he made eye contact but had no concept of personal space or how roughly he was treating something. he would not play, but he would sit and watch his hand flap for hours. he would occasionally rock back and forth and hum to calm himself. he was cuddly, but wanted to be squeezed tightly because loose was painful. his rages were awful, especially when something came up that he wasn't expecting.

we did social skills therapy, kelation therapy, de-sensitizing therapy, speech therapy, occupational therapy, physical therapy, had a picture schedule, went casein free, and used juice plus gummies. the casein free helped (a LOT!), but gluten free didn't.

at 6 1/2, we had him re-evaluated and he was taken off the spectrum and given a sister diagnosis of sensory integration dysfunction. at 10, he acts very neurotypical except for the fact that he can recount EVERY single football game down to the individual plays for the last 8 years and still will occasionally rock himself for comfort. he can get very upset over minor things, but handles the daily fluctuations to changes in his schedule like a pro. i think he could still be considered part of the spectrum depending on who does the evaluation, maybe ppd-nos, but we are content with how he is without it. it was very important we had the diagnosis early on for getting the help he needed in school, but we have that fine-tuned now.

personally, i am glad we did as many interventions as we did as early as we did. look into dan doctors (it stands for defeat autism now). they are a tremendous resource. another resource that helped was learning 'love and logic' as a parenting style. we LOVED the book 'the out of sync kid' by carol kranowitz. i also recommend you join some support groups on yahoo... the knowledge they share with each other cannot be comprehended.

also, there is money to help cover some treatments. find your local developmental disabilities chapter and apply for a grant if you need assistance. it is never a huge amount, but it is helpful.

hugs.

dolly3186

look into dan doctors (it stands for defeat autism now). they are a tremendous resource. another resource that helped was learning 'love and logic' as a parenting style. we LOVED the book 'the out of sync kid' by carol kranowitz. i also recommend you join some support groups on yahoo... the knowledge they share with each other cannot be comprehended.

also, there is money to help cover some treatments. find your local developmental disabilities chapter and apply for a grant if you need assistance. it is never a huge amount, but it is helpful.

hugs.

Thanks for your story! It's so interesting to hear everyone's personal stories. My son sounds a lot like yours especially with the hand thing. He'll flick his fingers over and over and over.

I'm a little leary of the whole DAN doctor thing. I don't know...I've gotten so many mixed feelings from different people on them as well. Anyone use one?

vivie72

Jackson is my 9 year old. He was diagnosed with PDD-NOS at 2 1/2. At 12 months he wasn't really talking. By 2 he was getting informal services which increased with his diagnosis. He is now going into 4th grade. He was the lead in the 3rd grade play last year. He is in chorus, played community soccer, and takes gymnastics. He didn't really talk until 4 and now we have to beg him to be quiet. Early intervention is the key!!! He has his challenges but the early therapy will help tremendously!!!

Feel free to friend me.

Thank you for this. It's so inspiring to hear such nice stories like your son's. He sounds like he has made excellent progress. That's wonderful! My son currenly has no words or babbling whatsoever, but I am hopeful.

I just want what's best for him and I want him to be able to go to school, have friends, etc. I guess I'm just overwhelmed right now. So much is being thrown at me all at once.

Also - thank you to everyone who has replied to this thread so far. You have no idea how nice it is to hear from other moms/parents or people who know someone with autism. It gives me hope that my son will be able to function and have a relatively "normal" life...

My son is scheduled for an evaluation next month with a specialist, so I'm waiting to see how that goes. I'll make sure I let everyone know.

He has been making progress. I make sure I work and play with him every day. We got a new game, it's this elephant that blows these balls up in the air. I was so excited because my son loves it! Most toys he doesn't care for. He finds pieces of the toy that he likes (such as a tag on a stuffed animal etc) and won't play properly with most toys. Last night he was chasing after the balls and actually putting them in the elephant's ears and they were blowing out of its trunk! It was so exciting to me and great to watch...to see your child actually PLAY with a toy was so amazing.

Thank you everyone again for your thoughts, comments, etc. You guys honestly have no idea how much it means to me.

You are more than welcome. It is a process and you will have good and bad days. I am finally in a good place. There are times when I want things to be easier but I think we all feel that a one point or another about our kids. Getting professional help with qualified people will give him the best chance to make growth. There was a time I never thought I would hear the words I love you. He was 4 before we heard them. We did sign for a long time. But, eventually he made progress. He still likes to dominate the conversation about his preferred topics but he is communicating. hugs!!!

dolly3186

Just a quick update if anyone is interested. I have an appointment with a really well-respected Behavioral Pediatrician in October. I'm nervous to see what the outcome is, but feel I am in good hands with this doctor. I'll make sure to keep everyone posted as to what the outcome is! Of course I want him to say, "Don't be silly! Your son is fine!" I don't think that will happen, but I know he is still so little and will be able to get some great treatment for him now.

I'm feeling better about the whole thing at least, which is good. How is everyone else's kids doing?