Moms of Autistic Children

dolly3186

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?

karawRN

I am a nurse of the intellectually disabled/brain injured. I often work with autistic individuals.

I think 15 months is a little young to diagnosis autism. He could just be a late talker.

is him being non-verbal the only symptom?

Does he....
make eye contact?
smile when being smiled at?
response to his name or familar voice?
use communication gestures? (wave goodbye)
makes noise to get your attention?
play with other children?
reach out to be picked up?
enjoy being cuddled?

But is it good she is investigating for early intervention. Early age is the best time for improvement.

SuperstarDJ

Hi,

I knew there was something up with my son when he was 12 months old because he never reacted to his own name, hated to be hugged or comforted (which was heartbreaking as a mother) and then at 18 months the very few words he'd started to say, disappeared. I got a formal diagnosis at 2 years old. I don't think 14 months is too early as the earlier the intervention, the better. In saying that, without any other symptoms it would be impossible to diagnose at this stage. My son used to 'stim' by flapping his hands, spinning objects like coins, washing machine, balls, etc right up close to his face. His eyes would be wide open and it looked like he was nearly in a trance while he was doing it.

Try and seek out any support services in your area - I learnt more from other parents than from any professional.

Good luck.

Erisad

No, 15 months is a great time to start treatment. I started my treatment when I was 2 years old, I started speaking at age 4. I got a Bachelor's degree, graduating with honors and am now working to pay off my student loans. Not really using my degree right now but who is? I'm even been dating my bf for a little over a year now. The sooner you can get a diagnosis and treating it, the better off the child will be. Even if he is autistic, doesn't mean he can't live a good life like everyone else but an early intervention is key in his development. If you want to talk to me about it, you can PM me if you'd like.

SuperstarDJ

^^ Thank you for the above post ^^ It's really encouraging to read as it gives me hope that one day my son will have what you have. Thank you again!

caraiselite

my oldest son didn't speak until he was at least 3, and didn't comfortably speak in school to his teachers until second grade. (half way thru second grade he started talking to his teacher. she called it her best christmas present) he had early intervention and saw a speech pathologist three times a week until he was 4 or 5.. i can't recall.
he's a lot more emotional than other kids from what i can tell, but the doctors had me all worried when he was 2 and not talking.. then 3 and still not saying much...
he's 11 now and doing well.

he was officially diagnosed with selective mutism.

Erisad

^^ Thank you for the above post ^^ It's really encouraging to read as it gives me hope that one day my son will have what you have. Thank you again!

No problem. I know my mother would have greatly valued this kind of story when she was struggling with me 20 years ago, as there wasn't much info about it at all in the early 1990s. I was hell to raise too. The Ritalin did NOT help. So if they try giving your child ADHD meds, you may wanna skip that. Made me really aggressive.

SuperstarDJ

^^ Thank you for the above post ^^ It's really encouraging to read as it gives me hope that one day my son will have what you have. Thank you again!

No problem. I know my mother would have greatly valued this kind of story when she was struggling with me 20 years ago, as there wasn't much info about it at all in the early 1990s. I was hell to raise too. The Ritalin did NOT help. So if they try giving your child ADHD meds, you may wanna skip that. Made me really aggressive.

No, would never give my dear son Ritalin. I've seen some of the other kids who are on it and it just makes me so sad to see how different it makes them.
Yes, I really think there should be more adults like yourself to speak with parents of newly diagnosed children as you've no idea what the future is going to hold for your little one. Thank you again for the big dose of hope :)

cmeade20

Usually children are older when diagnosed but that doesn't mean 15 months is too young. To look on the bright side the earlier a child is diagnosed and begins intervention, usually the more likely that they are going to "get on track" developmentally so to speak. He'll always have autism but beginning intervention at this age is going to increase his odds of being a typical kid. My nephew started intervention at 2 1/2 for a sensory disorder. He still isn't crazy about being hugged or kissed but he has lots of friends, is able to play team sports and does just fine in a general ed classroom.

mrandolph69

My 6 year-old son was diagnosed with mild/moderate ASD on his second birthday. He still has a lot of communication issues that we are working through but early intervention was the key to the improvements he has made. Look at a diagnosis as information and a tool to be used to help you know what services to get him. The earlier you get the diagnosis the better. I see absolutely no reason to delay finding out what, if anything, is going on. Yes, getting the diagnosis is devastating but not having it means you won't know exactly what the issues are and how to address them. Knowledge is power.

whiteheaddg

Time to start educating yourself. I'll admit my wife did this a lot better than me - she has read dozens of books on autism spectrum disorders ranging from Asperger's to the other end of the spectrum. She regularly gave me my reading homework/excerpts from key books she read. The reason for this is that YOU will be your child's best, and sometimes only, advocate. Find a parental support group in your area - I guarantee someone has already been through a particular challenge you will face and will be there to guide and educate you. However, no one will care for your child like you will - this will be frustrating at times as you will face a sometimes apathetic and seemingly lazy system. Persistence and single-minded determination will win the day.

Be aggressive with early intervention - very aggressive. You may need to get an official diagnosis to open up various services (including IEPs at schools). Don't shy away from this - the services can be worth a lot of money.

You will have many "enemies". My parents, initially, warned me not to "saddle" my child with this dianosis and that we were over-reacting. When trying to work an IEP for pre-K, school officials told us that he was not on the spectrum he was just "too smart" and "acting out" in certain ways. When we first heard this we were elated - just what we wanted to hear. They were wrong and their motive was purely money based.

My wife has many binders and folders. Every appointment, e-mail, meeting, etc. is tracked. Documentation will be your friend.

Our son is starting 1st grade in a typical class without direct one-on-one support (he had this in pre-k and 1st semester of K). We still employ an ABA Skills trainer who monitors progress. It's also important to understand typical age-appropriate behaviors so you don't confuse them with ASD behaviors.

The doctor who gave us the initial diagnosis immediately wanted to put him on some heavy meds - we refused. Glad we did - not opposed to this, but think it is appropriate to try other avenues first.

I could go on and and on. I'll end with how I started - educate yourself. Our son is a true blessing and we are working hard to give him the tools necessary to succeed in a tough society.

Aleluya17

I am a sister-in-law to an amazing person who happens to be autistic. There is lots of support out there for people in your situation. If you get overwhelmed there are a lot of great resources out there. Take advantage of them.

dolly3186

I am a nurse of the intellectually disabled/brain injured. I often work with autistic individuals.

I think 15 months is a little young to diagnosis autism. He could just be a late talker.

is him being non-verbal the only symptom?

Does he....
make eye contact?
smile when being smiled at?
response to his name or familar voice?
use communication gestures? (wave goodbye)
makes noise to get your attention?
play with other children?
reach out to be picked up?
enjoy being cuddled?

But is it good she is investigating for early intervention. Early age is the best time for improvement.

Thank you everyone for all the information and support! You all don't know how much this means to me. I have been reading everything I can about autism and educating myself.

In response to the above question - he does smile when smiled at and has excellent eye contact.

He does not wave bye or have any gestures and does not play with his sister.

He does reach to be picked up and love cuddles. He also seems obsessive about certain things...he love tags. ATags on blankets and clothes etc. He will find any tag and scratch it with his finger.

This is so devastating to me and sad. Its great to know there is hope though.

Can anyone recommend any good books about this subject? There is so much information I don't know where to start.

Erisad

I am a nurse of the intellectually disabled/brain injured. I often work with autistic individuals.

I think 15 months is a little young to diagnosis autism. He could just be a late talker.

is him being non-verbal the only symptom?

Does he....
make eye contact?
smile when being smiled at?
response to his name or familar voice?
use communication gestures? (wave goodbye)
makes noise to get your attention?
play with other children?
reach out to be picked up?
enjoy being cuddled?

But is it good she is investigating for early intervention. Early age is the best time for improvement.

Thank you everyone for all the information and support! You all don't know how much this means to me. I have been reading everything I can about autism and educating myself.

In response to the above question - he does smile when smiled at and has excellent eye contact.

He does not wave bye or have any gestures and does not play with his sister.

He does reach to be picked up and love cuddles. He also seems obsessive about certain things...he love tags. ATags on blankets and clothes etc. He will find any tag and scratch it with his finger.

This is so devastating to me and sad. Its great to know there is hope though.

Can anyone recommend any good books about this subject? There is so much information I don't know where to start.

I can't remember if I told you this or not, but anything by Temple Grandin is good. It's dense reading so if you were looking for a less scientific look at it, I'm not sure where you would go but there are many books on the topic. I'm sure you'll be able to find a good resource. Read reviews of the books on Amazon or something before purchasing one though.

dolly3186

I am a nurse of the intellectually disabled/brain injured. I often work with autistic individuals.

I think 15 months is a little young to diagnosis autism. He could just be a late talker.

is him being non-verbal the only symptom?

Does he....
make eye contact?
smile when being smiled at?
response to his name or familar voice?
use communication gestures? (wave goodbye)
makes noise to get your attention?
play with other children?
reach out to be picked up?
enjoy being cuddled?

But is it good she is investigating for early intervention. Early age is the best time for improvement.

Thank you everyone for all the information and support! You all don't know how much this means to me. I have been reading everything I can about autism and educating myself.

In response to the above question - he does smile when smiled at and has excellent eye contact.

He does not wave bye or have any gestures and does not play with his sister.

He does reach to be picked up and love cuddles. He also seems obsessive about certain things...he love tags. ATags on blankets and clothes etc. He will find any tag and scratch it with his finger.

This is so devastating to me and sad. Its great to know there is hope though.

Can anyone recommend any good books about this subject? There is so much information I don't know where to start.

I can't remember if I told you this or not, but anything by Temple Grandin is good. It's dense reading so if you were looking for a less scientific look at it, I'm not sure where you would go but there are many books on the topic. I'm sure you'll be able to find a good resource. Read reviews of the books on Amazon or something before purchasing one though.

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?

mrandolph69

I know you don't have a formal diagnosis but AutismSpeaks has a great "100 Day Kit" that is designed to help parents right after getting an autism diagnosis. It may have some info that will help you. Here is the link:

https://secure.autismspeaks.org/site/c.8hKPL7NMLpJ4G/b.7518465/k.7B65/100_Day_Kit_Download_Request/apps/ka/ct/contactus.asp?c=8hKPL7NMLpJ4G&b=7518465&en=cvKNL3NLIbKWJdNOKaJSKfP5LpIVI6NQJhITJgM6IzH

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.

justjenn1977

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!

pain_is_weakness

i have a 3 yr old who was recently diagnosed with autism. I personally think 15 months is too young for a diagnoses, I was thankful my pediatrician send me to every specialist she could before labeling my son. Please don't listen ot the first person you see, or the second even, wait it out, put him in a preschool with other kdis who don't talk they will work with him. Even with autism, it is not like he will never talk. My son was 2.5 when he started school, said only 2 words mama and dada. He was in school for 5 months and he not spekas 7 word sentences! Uses sign language and PECs communication (picture cards to form sentences).


As far as feeling lost please don't. It is really not that bad, I guess a little easier for me because my adult brother has asperger's so to me it doesn't matter, ym son is still my son and I still have goals, expectations, and aperations for him. I jsut had to adjust my style with him. I really do not se emy son any differently, when other kids his age are around and he gets overwhelmed and acts out I just tell parents he has autism and my child is still learning to play and communicate his feelings. Often it leads to a conversation because they don't know much about it or may have someone in their family who also has autism and understnads.

Going top new places, out to dinner, having people in our home, or going to theirs will always be a struggle, for my son it is more of an emotional problem we have and we do face judgement at times. It will be ok. Just please, get a second third, and maybe fourth opinion after exhausting all resourses for early education first. I have 3 other kdis who do not have autism and they didn't speka relaly until 15-18 months or beyond, all kids are different.

Good Luck!

ellenxmariex3

I'm not a parent but my older brother is handicapped and during the summer I'm his primary caregiver.

15 months does seem a bit early. At that young, the doctors were discussing whether or not my brother had Autism as well. It turns out he has symptoms of Autism but his main diagnoses is cerebral palsy, which affects him in similar ways.

He is on a combination of medications, including ADHD meds and seizure meds.

The doctors and my parents both believe he may have selective mutism as well but it's never been formally diagnosed. Selective mutism means the child/adult will not talk in certain settings such as a school environment. Not too much is known about the cause or treatment unfortunately. I do not believe that they diagnose selective mutism until older though.

The most important thing is to become your child's advocate. My parents have file after file of documentation from IEP meetings, doctors appointments, hospital visits, ect. They push very hard to get my brother into the specialized programs that he needs. He is now working in a supervised work environment through the local organization for special needs adults and children. He also plays 4 different sports in a league specially for special needs children. He probably has more of a life than I do! He may never fully be "normal" but who is?

IronSmasher

I don't think it's too early.

I slipped through the net, and self diagnosed at 30 because there is no facility for adults with Asperger's in my area.

I can't describe what it's like to feel like an alien for 30 years.