Please Help - freaking out about autism and all alone

[fizgig]

I am in a terrible emotional place and just feel like I have no one to turn to. DH is even more of a mess than me and I just need someone to talk to. I'm lost and crying all the time and just can't seem to figure out how to deal with this. Sorry this is probably going to be long but I need to tell this all to someone and could use some wisdom from other mamas. Two things I just need help with - 1) I'm worried my son has autism and want to hear what you all think and 2) I need help with my reaction to the idea that he has autism because right now I feel like the worst human being on the planet.

First some background, my son, 16mo, has always been "high needs" and had terrible reflux for his first 10mo. DH and I got through his first year with the mantra "it will get better." I've given up sleep (he's never slept for more than 3 hours at a time), food (he has dairy, nut, citrus, and eggs issues so I've been eating none of those since we still primarily breastfeed), I've majorly stepped back a career I love, my marriage is falling apart (we haven't slept in the same bed since DS was born, we have no time together alone, etc). I feel like I've sacrificed everything to make sure DS is as happy and healthy as possible. I think DH and I actually have mild post-traumatic stress syndrome from the intense difficulties of raising DS so far.

But now I'm really starting to worry that something is wrong with DS and I'm collapsing in on myself.

What I'm worried about: DS has always hated cuddling. Overall he's not very affectionate other than some hugs although he is Mr hugs with me these days. He will barely let DH touch him unless he is going to hold DS to watch a video (a treat). DS doesn't make great eye contact though he will sometimes. He doesn't seem very interested in back and forth play.

He has never once imitated a facial expression or sound. He has imitated me playing a very few times (like a total of 3 or 4 times) but usually he prefers to play by exploring things on his own. He wants to play near me but not really with me at all. He doesn't wave hello or goodbye and won't high-five even though I've been trying to teach him for months. I've never tried signing consistently with him (a HUGE regret now).

Verbally he is behind. I know 16 months is early but when I tell people he has NO words (I mean not a one) they say "well as long as he is understanding basic commands". Which makes my heart lurch because he really doesn't. He is babbling but hardly at all. He has gone from just saying dadadada over and over to more sounds lately, mamam, baba, etc even though he doesnt' do it all the time. That makes me hopeful but his lack of comprehension is really worrying me.

He will VERY rarely throw me a ball if I ask or something but he doesn't respond to very simple things most of the time. He also doesn't respond to me calling his name which I know is a huge sign of autism. I can be right next to him yelling his name or making all kinds of crazy noise and he won't even turn his head to see what the racket is. But then sometimes he hears me in the next room and comes running so I'm afraid its not his hearing (sadly I am right now just praying this is a hearing problem!).

But then there are things that make me think I am overwrought and just being crazy. He loves being around other kids and will follow them around (as along as I am right there, otherwise he gets very shy and will get upset). I've seen him imitate other children at least a few times. He smiles at me and his grandparents all the time (but not at DH). He giggles and likes to play peek-a-boo all the time. He points to things he wants and makes sounds. He has pointed at pictures to get me to tell him what they are (though not in months so I'm worried that has gone away?). He doesn't really do any of the physical things I associate with autism (hand flapping, etc).

So I have no idea how much of his behavior is normal. Does anyone have similar experiences? Thoughts? Could this just be his personality? I know he has red flags but I just would love to hear other people's experiences. I am arranging for an assessment as soon as I can get it worked out so I know that is the right next step but I would also love personal stories, anything. I know people say to trust my gut but I have no faith in my own ability to judge anything right now.

Then onto the next problem. I feel like the worst human being in the world because when I think of him having austism all I can think about is how it is going to mean I never get the things I wanted out of life. I was so excited about teaching my little one about the world, painting and dancing, and playing games and then teaching him to read, and watching him thrive at school, then him going off to college and doing cool things with his life. Along with that I imagined him growing up and me getting more time to do things I love, getting more time with DH. Then when DS went off to college I imagined DH and I retiring and living happily in some little cabin somewhere. Going for walks and reading and seeing our DS for holidays.

Now all I can imagine is me at 85 changing my son's diapers. I imagine my son never being able to really feel love for me. I see a life of burden and work and never any time for DH and I and I cry imagining a life of sorrow and difficulty for us all. Then I feel like a selfish, horrible person for feeling those things. I love DS with all my heart and will always do anything I can to make his life the best it can be but I also wanted to live my life a little.

So I just don't know what to do. I feel like I have no perspective, no ability to calm myself down and be the strong person I know I need to be for DS no matter what happens.

Sorry I've written a novel and thank you for anyone who has read all of this.

[GreenGranolaMama]

Hugs Mama, sending you a private message...

[Abraisme]

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It sounds to me like you should get your son evaluated and take it from there. Some of the things sound like they could be totally normal (not talking or cuddling) and other things seem like a genuine red flag to me. My now 6yo DS was a late talker (said mama at 2) and has never been a snuggley kid. However he did imitate facial expressions, laugh and was very spacially oriented from a young age (puzzles, bike riding, legos, etc).

I would suggest that you try to find an autism (if that's what he has of course) support group and get some help that way. I'm sure there are many, many other families that have gone through this.

Best wishes, I think your feelings are totally normal and appropriate about this situation.

[marinak1977]

[triana1326]

I've worked with autistic children for a few years and yes, there are definitely some red flags that I would be concerned about. You are doing the right thing in getting an assessment. The severity of autism can sometimes (not always!) be lessened if it's diagnosed and treatment begins early. The earlier the better! Once the assessment goes through and you have a better idea of severity, or even if your LO is just a slow developer, you can begin formatting a treatment plan. I've had parents switch diets, add/take away supplements and vitamins. Others have in home workers provided through various social services programs (that's what I used to do). Autism is strange in that what works for one child lessens the severity while increasing it in others, so keep on being sensitive to your child and how they are reacting.

As for how you're feeling: IT IS COMPLETELY NORMAL!!! I have yet to work with a single mother who doesn't feel the same way you do. I worked with one family whose son was severely autistic (biting and bolting were normal for him) and his mother gave me a copy of the poem I'm pasting below. May it give you some peace to know that you are not alone in how you feel and hope for your future....hugs to you mama. PM me if you ever need to talk. I may not have an autistic child, but I know a bit about the struggles you may face in the future...

Welcome to Holland

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, the Michelangelo David, the gondolas in 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 in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. 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 your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

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

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

Written by Emily Perl Kingsley

[confustication]

My middle child will be 2 in less than a month. He doesn't talk, he's just started pointing at things, and whether or not he wants to be hugged is pretty questionable- and entirely dependent on his mood at a given moment.

He toe walks.

He is very fearful of anything new and scary.

We thought it was all his hearing (they did discover some issues there, but they are very minor.)

His younger brother- at nine months- babbles more than he has in his life. There is a 14 month gap between the two boys.

His current diagnosis is PDD-NOS, it will be autism at some point. And that is ok. Nope, not at all what I expected when he was born.

He is the most amazing person I have ever known in so many ways, and there is no reason that a diagnosis means he has to fit into a box of mistaken preconceived notions. He is bright, and he does interact- we just had to realize how best to help him.

Go ahead and have an evaluation, if there is something going on- get everything in place to help him. Grieve for a bit if you feel the need, but then you simply go on being the best parent you can be.

I also would really suggest you educate yourself about what autism is, and what it isn't.

This- doesn't go up in smoke with an autism diagnosis, and while it is a huge misconception, and I understand it, I can't leave it without a reminder that people with autism can be amazing, productive, independent, successful people. They do feel emotion, and they don't stop you from living your own life, so while you are entitled to your own feelings, please don't root them in unfounded and outdated misconceptions.



"Then onto the next problem. I feel like the worst human being in the world because when I think of him having austism all I can think about is how it is going to mean I never get the things I wanted out of life. I was so excited about teaching my little one about the world, painting and dancing, and playing games and then teaching him to read, and watching him thrive at school, then him going off to college and doing cool things with his life. Along with that I imagined him growing up and me getting more time to do things I love, getting more time with DH. Then when DS went off to college I imagined DH and I retiring and living happily in some little cabin somewhere. Going for walks and reading and seeing our DS for holidays.

Now all I can imagine is me at 85 changing my son's diapers. I imagine my son never being able to really feel love for me. I see a life of burden and work and never any time for DH and I and I cry imagining a life of sorrow and difficulty for us all. Then I feel like a selfish, horrible person for feeling those things. I love DS with all my heart and will always do anything I can to make his life the best it can be but I also wanted to live my life a little."

[Swandira]

Have you had his hearing checked? A hearing loss could explain most or all of what you describe, I think. It's worth exploring, anyway.

*hugs*

Nealy
mama to T (7), L (4), and O (18 months)

[ledzepplon]

Couldn't read without posting. I don't have expertise with autism, but I can tell you that you are in no way selfish for having the feelings you are expressing. I imagine I would feel the exact same way.

[fizgig]

Thank you all for the hugs and feed back and for making me feel like I'm not a ogre for feeling some of the things I am experiencing right now.

Nealy I will definitely get his hearing checked! Triana thank you so much for the beautiful poem, I know the key to this will be rethinking my own preconceptions more than anything else.

confustication, I do know that my reaction isn't rally very rational but I'm fearing worst case scenario (based on a woman I know whose child is 16 and cannot function without her). I am trying to do more research and am especially looking for first hand accounts of raising autistic children if you know of any good sources.

We have an appt with his ped on monday to request an assessment so I guess I'm on the roller coaster and will just have to see where we end up.

[serenbat]

Did you do well visits in the past?
Has anything shown up at them?

since most do not check until over 12 months I was just wondering

based on a woman I know whose child is 16

has this woman seen your child? asking because I have a close friend who has a full autism child, she is very good and while peds don't say a word until a certain age, most who have a spectrum child can tell you early on (around 9 months) if the child is on the spectrum, most know more than some peds do

have you had any feedback from others seeing these signs?
sometimes you see things other's don't and sometimes other's see things that you don't---you may wish to speak openly with others that are in your life and see what they have noticed so that you can mention additional things at your visit/evaluation

[newmum35]

One thing I've learned in life is that most of the things you worry about never do happen while some things you didn't think to worry about do happen! So the next time you imagine yourself as an 85 yr old changing diapers, I'd keep that in mind. There are too many variables between now and then. It most likely will never happen, even if your son ends up being on the spectrum. I would try to concentrate on the present and the future will take care of itself.

I found this story inspiring and hope that it will give you hope too.

http://abcnews.go.com/WN/Broadcast/s...ry?id=10933858

[candycat]

My son was like that. I had him evaluated and he was in therapy showing every last red flag for autism. He started talking at about 2 and quickly graduated from therapy. He is a bouncing ball of energy now but it is WORLDS away from where he was. There is hope. I can't say that it will be the same for your son but I was 100% where you are right now. And for us, whether it was coincidence, time, a miracle, I don't know - but things are better now, much MUCH better. I hope it's the same for you. Just wanted to give you some positivity and hope.

[Sierra]

Breathe. Just breathe.

1. There are some stages that are harder with or without autism or any other special need. The pre-verbal part of toddlerhood, when kids know exactly what they want but can't articulate it, is especially challenging. On top of that, you are looking at this stage through lenses clouded by sleep deprivation and hardship-induced exhaustion.

Here is what I suggest: get some Signing Time videos. My son also did not imitate me. It was hard to stay motivated about signing because he gave me no clue that he was interested at all or paying attention in the least. Then one day I showed him a Signing Time video, and I will never forget his reaction. He was mesmerized. Within a few times of watching the videos, he started waving his hands in the air while watching it. Eventually, he began to sign and seek to communicate with me. When his world opened up to me, it did wonders for us both. It was transformative.

Opening up the lines of communication with your son is one of the best first steps you can take.

2. Stop thinking about your friend with the 16 year old. It doesn't give you any information about your son at all.

Let me tell you something. If anyone has cause to worry about their kid's future from a developmental perspective, it is me. My son's birthparents have profound developmental disabilities, and both require assisted living. My son's half-brother, who is just five years older than my son, is in a residential school and currently unable to function outside of that institution.

There was a time in history when I looked to ds' birthfamily as a roadmap of his future. Every challenge ds had was amplified by what I saw as his genetic legacy. On occassion, that was a gift. It allowed me to anticipate challenges for ds and follow-through in advocating for support services he wouldn't have otherwise received. But more often, it undermined an authentic relationship with my child in which I could get to know who he truly was. I had to give my child room to be the unique person he was, and over time I have learned to do so.

The first step was letting go of the long term roadmapping based on worst case scenarios. At 16 months, there is no way on earth to predict who your child will be at 16, 26, 36, or 46. Heck, "neurotypical" children at that age act pretty weird, don't you think? (And even neurotypical children could have things happen at any point in their lives that cut short those dreams of which you speak.)

My son is five. Certain things are a challenge for him. A few things I could have guessed when he was 16 months, others I would never have thought of. But more than anything, my son has surprised me with his abilities. He is a really bright kid with an amazing memory and a gift for seeing things from perspectives that others miss. He does prefer "parallel play" type relationships with other kids (with the exception of his sister), but that's only because other kids are unpredictable and my son likes predictability. He is charming, sweet, gentle, compassionate, and well-liked by all the children in his class at school, and he is adored by his teachers. He is persistent and resiliant, and I know that will take him to all sorts of successes that I can't even begin to imagine.

I know it is hard to believe, but in a way, every parent experiences what you are experiencing. Before our children arrive in our lives, we imagine all the things we will teach them and do with them. And then our children arrive, and we find out who they are. We have a choice. We can cling to those pre-parent visions of our children and try to force them to become the people who will make those visions a reality. Or we can come to know the real joy of parenthood: getting to know our children for who they really are.

Without my son, I wouldn't have been doing ballet in my living room tonight. I forgot how much I love to dance. I forgot how to dance. But my son is teaching me and helping me re-discover a battement and a relevé. How much I would be missing if I was still ringing my hands over whether or not he'll need assistance in his adult years just because I've seen others need it.

3. Autism is but one of many developmental challenges. Even things that are considered the typical "red flags" of autism, such as lack of eye contact, could be a part of any number of other challenges. A kid who has low muscle tone, for example, is going to be more slow to imitate facial expressions and non-verbal communication such as waving. The same child is also going to have more difficulty coordinating speech. And making eye contact? Well, that requires the eyes to converge and diverge for moving objects like faces, and that is going to be a challenge too.

Can a child have difficulty hearing and be able to hear sometimes very well and sometimes not at all? Yes, absolutely. If the child has fluid filled ears, that is exactly what will happen. My son had this, and he even passed a hearing exam by an audiologist and ENT. It wasn't until I insisted on a sedated hearing test (the only really accurate test at that age, IMO) that we discovered he had moderate hearing loss. Tubes were put in his ears, and all loss was reversed. It wasn't a "fix all" for him, but it did open up many doors for him in terms of communication.

The first step here is an evaluation. Autism is an easy arm-chair "diagnosis," but that doesn't mean your son "has it." If autism seems like a worst-case scenario to you, then try not to waste time assuming and worrying your son has it until a full evaluation has been done by a developmental pediatrician (note: not early intervention staff, not your regular ped, etc....by an actual developmental pediatrician).

4. Don't read "doom and gloom" info about autism. Most especially, do not, I repeat DO NOT go to "Autism Speaks" for info. If you feel you must research, look up "neurodiversity." Check out the Autistic Self Advocacy Network. Check out blogs and YouTube videos by people who are actually autistic (under labels such as "neurodiversity"). To quote one (parent and) MDC member on the spectrum, if "you are suffering from autism, you aren't doing it right."

5. Grief is normal. What you are feeling right now is not more powerful than anything you have come to know to be true. It's okay to feel what you are feeling, but this feeling will pass like all others. Try to remain open-hearted to who your child is even as you search for answers.

[crunchy_mommy]

There is one thing I want to say (besides BREATHE, you are making me anxious just reading your post!)

Your child is the same child whether he has autism or not. "Autism" is a diagnosis, a label, a set of symptoms to identify common issues... but whether he has autism or PDD or XYZ disease or is "normal" he is still the same little baby you love. I don't know if that makes sense & I certainly am not trying to minimize the challenges of having a child with autism but I just wanted to mention that. A label doesn't change who he is.

I don't think your thoughts and fears are selfish at all -- I think almost anyone would go through the exact same emotions. Give yourself permission to feel, acknowledge those feelings & fears, but try not to dwell on them -- they may or may not come to fruition.

Anyway, I also have a 16mo. I think it's hard to evaluate from an online description whether your DS is 'normal' or not... and I also think we tend to focus on the negative and overlook the 'normal' and positive behaviors. Have you spent a lot of time with other toddlers? Doing so might give you perspective & clarify your thoughts further. Your post did not scream 'autism' to me... in fact, I thought most of it was pretty normal, though maybe just a few troublesome issues particularly revolving around communication.

For comparison (though I wouldn't suggest basing a comparison on just one person, maybe others will add their descriptions!), I'll tell you a little about my 16mo DS, who I would describe as "relatively normal", "high-needs", and "slightly advanced, particularly verbally":
He isn't into cuddling unless he's nursing or reading. He doesn't mind being held but only if you are walking around, showing him things, etc. or if he just woke up. Basically, you have to provide constant stimulation for him to allow you to hold him.
He is very timid around other adults, slow to offer a smile (if he does at all)... clings to me, and really will only allow me & DH (and more recently, my mom & dad for very short periods) pick him up. He's very serious except at home where he will smile & giggle more freely. He is terrified of people in animal costumes & large animals up close but loves small animals. He doesn't like other children to be in my arms/lap but he will play side by side, though not with them. He initiates games with me & DH and loves to imitate us, but usually only when it's his idea.
He has about 200 words but they all sound very similar and he will often say a word (or do something) once or twice & then never do it again (this is normal according to our doc). His receptive language amazes me -- he will follow things like "go put your fork in the sink" or "throw this in the trash" or "you need socks if you want to wear those shoes" etc. or if I'm talking to DH about, say, a slide, he'll say "playground?" But as I said, I feel his verbal skills are slightly advanced, maybe he hit the 18mo language explosion a few months early). He used to point but now often won't, or he'll take my hand and make me point for him.
Often I will call his name repeatedly & he'll ignore me, but if I talk softly or get right in front of him when I say it, he'll look at me. He usually won't wave hi or bye but sometimes will, or will say 'byebye' instead or something. He will sometimes throw me a ball but mostly just holds onto it. He doesn't really like toys, he wants 'big people' things, like sunglasses or a rake or broom or hat. No matter how much I try to show him how to play with toys, he mostly prefers just to carry them around for a few minutes or study them or bite them. He loves nature though -- rocks, sticks, ants...
He is very volatile (though improving a lot since 10-11mos old)... He will scream & stamp his feet & kick if you try to take something he wants or pick him up when he doesn't want to be held... He HATES coming inside and cries hysterically when he wants to stay out. He used to cry all day long but now it's more sporatic, several times an hour he'll just cry or yell or whatever but we can calm him much quicker now.

Sorry to be so long-winded, just wanted to give you some idea of what he's like & I think if you observe other kids your DS's age that may help too... maybe help you feel more strongly in your gut if something's wrong or not.

[fizgig]

Wow I can't tell you all how much you all are helping me. Thank you, thank you, thank you!

Serenbat, we do well visits but every time I've brought up concerns she says we should wait and see what happens in a few months. I've been trying to ignore some of the red flags and she has encouraged it though I'm done acting like an ostrich. I think feeling proactive will help me.

Thank you all for the advice and calming thoughts. Sierra, your post really helped me decide what my next steps should be. I'm looking for a developmental ped asap and just ordered a signing time video.

[pink gal]

There are so many things in your post that I want to respond to, but only have a minute. First, please don't feel guilty for your reaction to your son's behaviors. What you are feeling is completely normal and valid. As moms there is nothing that touches our hearts like fearing that something is wrong with our children.

You are right to be concerned, but please don't blame yourself. You sound like a great mom and you are doing exactly what your son needs which is reaching out for help. If you live in the US you can get a free developmental evaluation through your state's Early Intervention program. Many states Early Intervention programs also offer diagnostic evaluations by a developmental pediatrician if your son qualifies for ongoing services through Early Intervention. Also if he qualifies he can receive ongoing developmental, speech, occupational, physical, and behavioral therapies based on what his needs are.

Therapy can help tremendously. He is very young and the fact that you are seeking help now will make a HUGE difference.

You can find Early Intervention in your area by Googling the name of your state along with Early Intervention. They are mandated by law to contact you back within 2 days and begin the evaluation process. If your son meets the eligibility criteria, which vary from state to state, they must have a plan in place for him within 45 days.

You can contact Early Intervention on your own without a referral from your doctor, but they will require a prescription from the doctor authorizing evaluations. If your regular pediatrician won't provide this it's time to begin thinking about another doctor.

The motto for Early Intervention in the state where I live is "The earlier we start, the farther they will go" It is very true. We see lots of kids whose Dr.'s have said wait and see. They missed out on valuable months of therapy that chould make a big difference. Trust your gut and seek help now. You will be so glad you did.

[serenbat]

I think feeling proactive will help me.

and as with other issues too-don't let them blow you- you are doing only a quick visit and they only see a few minutes, you are there all the time--go with how you feel and make demands to see who you feel you should and question and let them know you want answers, not just wait & wait and wait--some love to do this!