new here and to asd, seeking encouragement

[loretta23]

hi. i am happy i found this board and i have so many questions, but right now i am just needing some positive words from someone who has been there. my ds will be three in a month and we just realized that he's most likely on the spectrum. no dx yet, but all the peds & ei people we have met seem to be leaning that direction, as am i after researching. he seemed to be developing normally up until 2 1/2, when things kinda slowed down, then he had a regression a month ago, lost a lot of language and started some stimming behaviors, stopped some interactions. i'm now seeing how some of his quirks could be red flags.

i am on a roller coaster of emotions, but i am trying to just focus on helping him rather than indulging in my fears, disappointment, etc. i feel like i'm failing. our ei services don't start for another week so for the last month my dh & i have just been focusing all we can on ds, playing, connecting, encouraging language. i'm just really starting to burn out. i feel like if someone isn't focusing on ds at every moment we are losing valuable time and oppurtunity for helping him. the problem is that i am so exhausted physically, mentally, and emotionally that i am becoming a zombie and that is exactly what ds does not need. we have no friends or family nearby to help, it's just me & dh. i know i need to be strong right now, but it's getting harder and harder. sometimes i just want a break but if i turn on a movie or let him play alone i feel so guilty. i just don't know what i should be doing for him. it was hard enough when i thought he was typical to know how to mother (he's my first) but now i'm even more confused. before i just assumed he understood what i said, but now i don't know, so i don't know how to act when he doesn't do as i ask. i used to be kinda free range, unconditional parenting, attachment parenting mindset, but now i question everything.

i'm a sahm so i can do whatever it is i need to do during the day but i am losing all perspective. please, if you have any advice i would appreciate it. i'm not trying to delude myself, but please, i can only hear positive stories right now. i need the hope in order to keep up my momentum and be the best mom i can be for ds right now. fear of the future numbs me or fills me with despair. the worst part is that today everytime i looked at him i just felt sad, when just a month ago the feeling would have been so different. i know he's the same kid but i feel like now i should be mothering differently with this new information that he may be on the spectrum. maybe not?

anyway, thanks for listening, i really appreciate it as i have no one to talk to about this. i'm sorry for the pity party.

[halffull]

I don't usually post, but I couldn't read your post and not reply.  Please try not to be so hard on yourself.  My son was diagnosed just before 2 years old and I spent a good year just about losing my mind trying to help him in every way possible.  My EI coordinator (saint that she was) would always tell me that it is a marathon not a sprint...this did not hit me until about 1.2 years after diagnosis, and then I crashed...hard.  Fortunately, I pushed through and now he is 3.5 and making progress in a great ABA program.

We had the same concerns about pushing him too hard, (AP, free-range, etc.), it was difficult accepting that ABA was the best placement for Emmett.  He is thriving at his school and his tutors are great.  Life is not perfect, but we are happy.

Good luck!

Tiffany

[buttercup]

(((HUGS)))  I know that right now you are scared.  You worry what the future holds for your son, but look at what you have going for him -

1.  He has been red-flagged by 3 which is young when you look at the average children red-flagged or diagnosed with autism.  This means that you can start early intervention.

2.  YOU are his mother.  YOU are his love.  YOU are his support.  YOU are his advocate.  YOU will help him to reach his fullest potential.

So one of the most important things to do is to take care of yourself.  You will not do him any good if you are not emotionally and physically strong.  Find a support network of families with children with autism and get connected to what services and supports are in your community.  Start having or attending playdates that include these other parents so you can learn and know that you are not alone.  If you need me time - then find a way to make the time.  Even if  you go for a jog or spend 2 hrs in a library.  You need to do something for yourself. 

As for the guilt, you will always deal with it in some fashion, but remember that you can only do what you can.  Do what you can with what you have.  If you need him to be in front of the TV so you can cook dinner and he enjoys the show - then why feel guilty.  He is happy.  You are happy and getting what you need done.  It is only for a short time.  Also remember that each child will need "me" time.  Some kids will perform an activity, while others may stim (some do both).  It is there time to unwind and destress from the challenges of the day.  I completely agree with your efforts in engaging him for he needs that constant social interaction and hand holding to develop up the necessary social and communication skills, as well as learning to deal with any other related issues whether it be sensory or physical challenges.  But remember both you and him will need time to unwind and you should not feel guilty about not engaging him 24/7.  On a side note - some children with ASD are very responsive to visuals and learn to use them as a method of communication or learning.  My daughter learned her ABCs and sight words via tv shows.

It is hard to know what the future holds now, but things will get better once you have a plan and feel comfortable with it.  There will always be challenges, but you will have the strength to deal with it one at a time.  Just remember that there are support networks that can help you.  All three of my children have autism and these support networks (online and in the community) helped me to stay focused and strong.  YOU are a strong person and your son is so lucky to have you!

[EarthRootsStarSoul]

The best thing you can give your son is a happy mom.  When you are happy and relaxed, you can provide him with what he needs.  So focus on what you need right now - spend time with your friends (call them if they are far away), do stuff for yourself that you enjoy like crafts, reading, shopping, working out, etc. whatever makes you happy to recharge your batteries.  It would be good for your son to enroll in a high-quality group daycare so he can be around other kids, and it would give you time for yourself too.  Your pediatrician probably knows if there is a local support group for parents of kids with autism.  I live in a small town, but we have one. 

You are going to have to go out and find some mom friends.  Sounds like you might be a little introverted; I am too.  When I got divorced I realized I didn't really have any of my own friends in this town, and I had some really difficult times being a single mother with no support network.  I'm socially awkward, and shy, and on the autism spectrum myself, but I just keep trying to build friendships with other moms, and it is working.  Facebook helps a lot, and going out in the community and being involved.  Go to parks, events at the library, go see local bands play shows, and just be interested in what other people are doing.  If nothing else, spending time with other people gets your mind off of autism, and it's like a breath of fresh air. 

[Emmeline II]

To paraphrase a line I think came from a movie (and was actually talking about love) "once you realize something is 'wrong,' you want to start the "fix" right now."

EI starts in a week--that counts as "action" on your part; you are doing something. Once you get evaluations and therapies going on, and you have people to talk to about your ds' development and learn practical ways to help him, it will get a better.

Though you will probably learn parenting techniques that may be different from some things you are doing now, you aren't going to "ruin" him in the next week . You can't be "on" all the time; you'll be "on" sometimes and the rest will get folded into your routine.

[Linda on the move]

Originally Posted by loretta23 

i feel like if someone isn't focusing on ds at every moment we are losing valuable time and oppurtunity for helping him. the problem is that i am so exhausted physically, mentally, and emotionally that i am becoming a zombie and that is exactly what ds does not need. ...

please, if you have any advice i would appreciate it. i'm not trying to delude myself, but please, i can only hear positive stories right now.

  I've been there.  Take a deep breath, and trust that the universe wouldn't have given you this child to parent if you were not the best possible mommy for him. It's going to be OK. Ok is really big place, and it may not look like you thought it did, but still, things are going to be OK.

I can relate to a lot of what you wrote, and I changed  my phylosophy of parenting as I got to know my DD (who has Asperger's and is now 14).   She hadn't read the same books I had

You don't have to figure this all out today. You don't have to be perfect. You can put on a movie and relax and let your mind settle and it will be OK.

There are a lot of issues in your post, and I'm not going to try to tackle all of them at once, but I want to reassure you that you can take a little time for yourself, so you can catch your breath, and your son still turn out to be his best self.

For a positive story -- my DD is doing really well right now. She is thriving in an alternative school. This summer, she is on a swim team through our cities parks and rec program, and is volunteering at the library in the summer reading program. She's different. Parenting her has been different that parenting a typically developing child, but she is happy and thriving, and she is a joy to be around.

Peace

[EarthRootsStarSoul]

Quote:

Originally Posted by loretta23 

... right now i am just needing some positive words from someone who has been there. ... but i am trying to just focus on helping him rather than indulging in my fears, disappointment, etc. i feel like i'm failing.... i'm not trying to delude myself, but please, i can only hear positive stories right now. i need the hope in order to keep up my momentum and be the best mom i can be for ds right now. fear of the future numbs me or fills me with despair. the worst part is that today everytime i looked at him i just felt sad,

The awesome thing now is that we know so much about autism and how to teach autistic kids.  My siblings and I all grew up at a time when no one ever even heard of autism, so we all grew up undiagnosed.  My brother has autism, and while he had behavior problems, he is also highly intelligent.  His senior year in high school, he took some classes at the community college because he was intellectually beyond what the public high school could offer him.  Now he holds down a job, owns a condo, does beautiful photography on the side, and lives completely independently.  You can still tell he's autistic by his awkwardness, how he moves, his social mistakes; but is he 'disabled'?  I couldn't call him disabled with all he's accomplished. 

In second grade I was tested for the gifted program.  Despite the fact that I maxed out the visual IQ test, they wouldn't let me in because I didn't talk.  I still giggle about what they said about me, "Maybe she's smart, but if she can't talk, she's not gifted."  When I was 16, I was awarded a full scholarship to a prestigious boarding school, where I graduated with honors.  Now I'm a single divorced mom, working full time, bought a house by myself, and furthering my education at college with a GPA of 3.6.  I was just 'diagnosed' with PDD-NOS, but am I disabled?  Hardly! 

You can't look at any child at age 3 or 5 or 8 and say, "Well, that's how they will be when they're 12 or 18 or 25."  I remember being four years old, sitting in the middle of the kitchen floor making gurgly noises and ignoring everyone.  The same age, I was kicked out of ballet class for not participating (I had no idea anything was even going on outside my head), and kicked out of gymnastics for refusing to be upside down.  My mom had to teach me what pointing was when I was six.  I was still significantly echolalic into first grade, and I remember my teacher trying to punish me, but I had no idea I was even being punished.  (put my head down on my desk, stand up by the blackboard)  I was always waiting to be instructed about the next part of the game I thought we were playing. 

I never got extra help.  No one knew enough to think I might have a developmental delay or disability.  Yet, I outgrew a lot of it.  I still have trouble with conversation and eye contact, and I still won't dance (hahaha), but I can pass for shy or introverted.  Autism is not all doom and gloom. 

[nayma]

first of all, i'm glad you found this site.  my daughter is now almost five (asd), and a few years ago, this board saved me so many times!  yes, it's hard to see our kids differently.  it's hard to suddenly feel like we don't have a guidebook anymore.  it's hard to feel like we need to do xyz RIGHT NOW, or all will turn out poorly.  the reality is that your son is okay.  if he watched some tv every day for the next year, he'd still be okay -lol!  like the pp said, this is NOT a race, not a sprint, not something that has to be *tackled* immediately. 

if you set totally unrealistic expectations for yourself, you will crash and burn.  i'm not saying that to sound cruel - i'm saying it because parenting a kid on the spectrum can be challenging sometimes, and you need to strategize ways that will keep you emotionally healthy.  my first suggestion is to find a support group, either locally or online- or find some blogs you enjoy.  you need people who understand what you're going through, and people from whom you'll draw suggestions and wisdom.  it may take a second to find your "tribe," but keep at it- i have found a few true and dear friends over the last few years. 

please remember that your son will not *break* from you not doing everything everything everything right now.  when people talk about early intervention, they're saying that it can seem more ideal to find out your child has an asd when they're on the younger side (your son is very much on the younger side).  that doesn't mean that people whose children aren't diagnosed until they're much older aren't totally okay.  it means this knowledge can give you access to more information, more tools, more understanding, more support. 

i am going to respectfully disagree with the poster who said you should put him into a daycare so he can learn social skills from other kids.  at this age, he will not naturally learn social skills from other kids- he will not pick up cues, follow their example, etc.  i'm not saying you should isolate him in any way, but if he's going to be in a daycare, i hope it's a program where the teacher is experienced with asd, and actively teaching skills to the kids.  so, i'm not saying daycare is bad at all, but i'm saying he doesn't *need* it right now, imo.  at his developmental age, he's still learning the most from a parent or primary caregiver.  if you're able to stay home, and are happy doing that, i would highly recommend looking into floortime/DIR.  stanley greenspan has done loads of work with children who are developmentally delayed, and i think floortime is a really approachable method for parents new to the diagnosis.... 

autism is like so many things in that everyone will recommend something different.  remember that you are his mom, and you know him best.  the biggest piece of advice i would give to any parent, but especially to a parent whose child probably needs extra advocacy, is TRUST YOUR GUT.  do not do things that don't feel right.  there are lots of great different therapies, approaches, etc. - but not every one will be right for him and your family. 

here are some blogs i enjoyed in the beginning - all the moms have very different kids and very different approaches - i.e., a boy with pdd-nos whose parents sent their kid to a traditional school, a boy with asperger's whose mom homeschooled her son and did RDI, and a girl whose parents sent her to an ABA school.

http://kristenspina.wordpress.com/       - go back to her early archives

http://kyraanderson.wordpress.com/     - ditto

http://adiaryofamom.wordpress.com/

mama, take a deep breath, rally your best folks around you, and know that you will be fine.  and your son will be fine...  please keep coming to this site, and feel free to pm me.

take care, katie

[loretta23]

wow. thank you all so much from the bottom of my heart. i was really lacking PERSPECTIVE, i just didn't know what to think. you have given me clarity and optimism and i will add those to my tool box, as it was getting pretty empty. thank goodness i found myself here, i've been on line so much lately, like i'm going to find "the answer" somewhere, and of course that's unrealistic and unhealthy. so much out there about asd is just written so bleakly, so for boding. thank you for talking me down. today i decided to just relax about it, not try to force anything. i definitely think he could sense it and he was in a great mood all day and hardly chewed on anything. i keep telling myself to be present without judgment or disappointment, just accept him and be proud of him where he is at in this moment, no worries about the future or regrets about the past. there are so many specific comments from each of you that really resonate with me and i'd like to address them each but i had to make this quick. i just had to make sure i got a quick thank you in while i have a moment. i know i will be re-reading these responses many times for encouragement. and of course i'll be back with more questions as the weeks go by. thanks again for listening.