autism spectrum disorders - DS

  1. You have chosen to ignore posts from stefani2. Show stefani2's posts

    autism spectrum disorders - DS

    hi all, what i'm about to post is difficult and paints me in a very bad light, but these are anonymous boards and i could really use the vent/support. 

    i think DS#1 (2.5yo) is going to be diagnosed somewhere on the ASD spectrum.  we just had part 1 of a two-part evaluation at MGH's the lurie center, and we go back next week for the results/recommendations/plan for moving forward.  after reading more about ASDs and witnessing the evaluation, now in hindsight i see so many "red flags" that i've been sweeping under the rug, and i am so scared that now i've wasted a year of time where we could have been helping DS's brain develop differently or helping him cope in other ways.  (if that's even possible - shows what i know about ASDs.)  i have spent the last week crying, feeling numb, no appetite, walking around like a zombie, and taking my sadness/fear out on my children (just being cold, taking toys away from DS when he's doing something "autistic" with them, resenting DD (his twin) b/c she is a reminder of "normal", worrying that DS#2 (3mo) is going to have the same problems, etc.) - not to mention (this is the worst part) i'm ashamed and embarrassed to admit DS has a problem (and especially this problem).  (i know - shameful.)  my biggest fear has always been having a child with ASD.  i can't concentrate at work.  i feel COMPLETELY alone.  DH and i are not sure we're going to tell people for fear of them treating DS differently (obviously we'll have to see what the actual diagnosis and recommendations are, but this what we're thinking right now), which leaves me with no one to talk to.  i can't even talk to my mom about it b/c i think she and my father are judgmental and i just can't take that right now (don't think they mean to be, but i interpret them to be.)  and i find myself retreating from corresponding with friends (and cancelling plans to see them) b/c it's so obvious there's something wrong and i don't know how to tuck it away.  i'm a high achiever, type A non-touchy-feely person and typically approach things with the attitude "if something's wrong fix it immediately" and "if a behavior is undesirable stop it" - and neither of these attitudes mix with what's going on.  i'm not a therapy type of person, but i think i need some sort of help maybe in the form of books to help me channel everything i'm feeling into a more positive light - b/c the way i'm acting is not good for anyone especially DS.  blah - i just had to brain dump somewhere.  this is the worst thing i've ever had to go through.  and DH thinks i'm being a big baby and feeling sorry for myself b/c so many people have so many more/worse problems - and i know that's true, but i am still feeling the most devastated i've ever felt in my life and i have to change that b/c it's making everything worse. 

    thanks for "listening" (reading).  if anyone has any recommendations on what to do from here i'd love to hear them.  (will obviously also ask at the follow up appt at lurie.)

     
  2. You have chosen to ignore posts from lissafro. Show lissafro's posts

    Re: autism spectrum disorders - DS

    stef,

    deep breath.  From what I've seen/read, everything you've expressed it totally normal, expected, typical, to feel upon diagnosis.  As an educator of older students, I've seen a lot of growth/development over the last 10 years in the way we help kids on the spectrum.  I can only imagine that the growth in knowlege and understanding will continue as time passes.  Your son has a great chance at getting the care/guidance he needs to excel in the mainstream.  Even though it is true, early diagnosis leads to earlier treatment and these early years are extremely important, relatively speaking 2.5 is not ridiculously late to get in the game.  There are students I've taught who were diagnosed on the spectrum at the highs chool level.  Your son will most definitely be growing up in a different world than they did. 

    Beign a type-A, can do person is incredibly helpful in your position.  You will be your son's advocate.  There will be paperwork.  You will be a great liason for him when it comes to working with educators and making sure he gets what is entitled to him from school systems. 

    You will get a lot more information from the assessments.  Some of it will be concrete and some of it will be open to interpretation, as well as subject to his maturation as well as subject to changes in definitions of things/statistics (always changing nowadays, with all the new research).  It will be frustrating to some extent to lack completely set in stone answers, especially for someone with your admitted personality, especially since the answers affect your child's wellbeing and life.  But, the nature of ASD is that it is a SPECTRUM, and therefore by nature is a range of fuzzy grey in many ways. 

    If there are services suggested/offered for family members, especially in regards to siblings/parents understanding, take advantage.  Ask your doctor for recommendations for good books/articles to read on the subject.  Stay away from google and Jenny Macarthyblecgh.

    Plus, remember, your sweet boy is still your sweet loveable son you carried inside you.  You know him. Now you just have a better way to help him make his way in the world.  You will have better tools to guide him and help others see what a sweet wonderful boy he is and will become.

    Deep breaths.  You're allowed to cry and feel disappointed things won't be as easy as you'd hoped for him or you or your family.  Don't feel guilty about that.  It's normal and natural and would be weird to not feel at all.  But remember this is a beginning, not an end.  This is a whole new way to get to know him and help him.  This is a door opening.  You'll be able to look back years from now and smile and know you did what you needed to do to help him out.  I have taught at least a dozen kids diagnosed ASD over the years.  They were all unique individuals with their own eccentricities--some more needy than others--but they were all crazy teenagers too haha.  You could say every one of the thousands of teens I've taught over the years was his/her own unique individual with eccentricities.  It's the human condition.  The kids who were diagnosed had paperwork to help me help them.  When they had good parent advocates, they got a better education than they would have without help.

    *hugs* (though I'm not really a hugger and you say you're not either--so perhaps no hugs if you don't want them Smile)

     
  3. You have chosen to ignore posts from luvRIboy. Show luvRIboy's posts

    Re: autism spectrum disorders - DS

    You have every right to feel everything you're feeling.  It's overwhelming and scary and unknown and all of the feelings you're having are okay. 

    My mom always says "we are only as sick as our secrets", so I'd think hard about keeping the diagnosis, whatever it is under wraps.  With a kid on the autism spectrum, consistency is a key element for them, and you'll need everyone in your circle to help support that, not just your husband.  And that will be true of work, family, as you'll likely need to take time for therapy, etc. 

    If you're not into therapy, I'd suggest starting a journal.  I always find writing my thoughts/fears/etc down is a great way to get them out of my head.  As an analytical/type A person, it might help to see things written down, as it will help you formulate an action plan for moving forward.  Once you see a plan, it's easier to feel like you have a little more control over a process that is, unfortunately, largely out of your control.

    Hang in there. This is a huge left hand turn in your parenting journey, and it's one you never wanted to take, but now you're here, so you'll figure it out.  I remember when you were so afraid of multiples, but now they're here and you love them to pieces, and you even had a third! You can do this...but don't try to do it alone.  It's not fair to you, your husband, your son or your other kids. 

     

     
  4. You have chosen to ignore posts from poppy609. Show poppy609's posts

    Re: autism spectrum disorders - DS

    Stef - print out Lissa's response and keep it with you. She has excellent words, IMO. I was an educator of elementary students with disabilities for 10 years (hopefully heading back to that in the near future) and have worked with scores of kids on the spectrum. As Lissa mentioned, the key word is *spectrum*. A diagnosis of ASD is not one thing. It is a collection of things, not all of which will apply to your son.

    The other thing that Lissa said which was the first thing that jumped out at me after reading your post: he is still YOUR son. You and DH will always be the ones who know him best. Don't let ANYONE try to define him to you. You said yourself you saw the red flags, even if you wanted to ignore them. You didn't NOT see them. You know your son. He will do things that you won't understand, and you will work to try to figure out how to respond, but you will always know him best. Well, other than himself knowing himself. He will tell you all sorts of things about himself, you just need to listen.

    My godson is on the spectrum. Diagnosed at 3 years old. He's now 5 years old and the other day his mom was working with him on remembering their phone number. She has been working on this with him for a while; she'd make up little songs and things and was getting frustrated that nothing was working. Finally he said, "Mom, just write it down and show it to me. Then I'll know it." Never occurred to her! She did that, and he now has it memorized. He knew exactly what he needed.


    I don't think you should feel you have to rush to make a big announcement about it to everyone in your friend/family circle. Why should you? I think you and DH should process it a bit and get to a point where you feel ready to discuss it. You certainly shouldn't feel you owe it to anyone to tell them, especially since it is so new and you might not even know how to have a conversation about it. Bringing it up to everyone in your world will just lead to lots of questions and suggestions - and assumptions. Until you are ready to handle those, I think keeping it under wraps makes sense. Unless you have people around you that you think will NOT barrage you with words. If you have that particular family member or friend who is an excellent listener and a good sounding board, that might be the person to start with. I don't think you should keep it a secret because you are ashamed or afraid; just while you are digesting the information. What you could do, if you decide you want to tell people but the thought of doing so is scary/exhausting, is write an email/note and send it to those you want to know. That way they find out the information, but you don't have to immediately soothe THEM or answer thousands of questions. In your letter, you could mention what you and DH feel would and would not be helpful to your family at this time.

    My best friend (godson's mom) often feels she can't talk to us about her daily life with my godson. She has sought out support groups of parents with kids on the spectrum. I think that is worlds more helpful to her than trying to explain things to us. She still talks to us, but I know it's not nearly as often and in as much detail as to the parents in her support groups.

    You mention books - I'll ask her if there are any resources she recommends. I have other folks in my circle who have kids with an ASD diagnosis and can ask them as well.


    Hang in there. Like you said, this anonymous forum is a great place to vent when you need to!

     
  5. You have chosen to ignore posts from Arcain. Show Arcain's posts

    Re: autism spectrum disorders - DS

    Stef - I'm so sorry for what you're going through. As always, these boards are full of fantastic support and advice, as evidenced by the posts above.

    I can't offer any educated advice about dealing with a potential diagnosis, so instead I'll just say that I am incredibly impressed by your self-awareness -- about your reactions to this and the ways that your personality and preferences might affect what's ahead. Many people lose that awareness in stressful situations like this. Just being honest with yourself in this way is huge. Just remember that guilt doesn't help anyone. Take the time you need, and seek out people you trust to talk to about it. I'm not sure how opposed you are to therapy, but this does seem like a case where having an uninvolved third party to process things with would really help. What about online support groups, like these boards but with other parents going through this stuff? I have a couple of relatives with chronic diseases who have found incredible support and help in this way, so I'd imagine there must be some for kids with ASD spectrum disorders.

    Take care, and know your BDC forum friends are thinking of you!

     
  6. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: autism spectrum disorders - DS

    Stef, I'm so sorry, in fact am in tears for your pain.  Both the pain of what you need to deal with having a child with special needs, but for all the guilt you are heaping on yourself for your very human response.  Human isn't bad, it's who we are and how we are made.

    When we dream of having children we don't hope for a child with a problem.  And, when we find out our lives aren't even going to resemble those with kids who are healthy and fall on the normal curve for development, of course, we'll all be ANGRY and SAD.  Wishing your autistic child was healthy like your other child is completely natural.  What happened to you and your family by autism affecting you is UNFAIR.  And, what is our reaction to unfairness but outrage?

    I believe your DH feels those things, too, but men cannot face negative emotions as honestly as women.  They are taught from childhood to put on a tough facade and muscle through as if nothing were wrong.  So, when you show your anger, fear, and sadness, it makes him all the more mindful of his own and makes it harder for him to stuff it all inside.  Therefore, he tells you you're being a baby and stop bellyaching - it's NOT because he believes that, it's because it forces him to face that HE FEELS THE EXACT SAME WAY and he doesn't want to or, worse, does not have the coping skills to do so even if he did want to.

    Sadly, the older generation is often woefully undereducated about such disorders and assume the behavioral issues of an autistic child are the ramfications of bad parenting because asds don't exist.  They know this isn't acceptable to say "these days" but that's possibly how they feel.  If that's the case, you can do nothing other than give them objective information, maybe a book, on the spectrum and the current research.  Aside from that you have to make a conscious decision to not internalize their ignorance and responses to you and your family that come of that ignorance.  Easier said than done, but you CAN do it.

    I don't have any actual advice other than to please stop heaping burning coals on yourself for feeling how you feel - it's natural, and you will eventually get a hold of what needs to be done and get through it.  Life will become your personal normal even if that's not everyone else's normal, and it will then feel OK to you.  Until then, you are a perfectly decent person with negative emotions that are perfectly justifiable.  Having negative emotions about a negative thing means you are an emotionally healthy person.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~

    Discretion is the better part of valor.

     
  7. You have chosen to ignore posts from KAM2007. Show KAM2007's posts

    Re: autism spectrum disorders - DS

    Stef, you're mourning the loss of the childhood you had dreamed of for your DS. He WILL have a great childhood filled with wonderful loving memories and reach all the goals you have for him. Receiving any long term diangosis for  a child is a process that goes through the stages of grief.

    Once you get through this stage, you will be his best advocate. There will be bad days and good days, but you get to come here and vent- we've all vented about something or another here. Before you know it you will in your new normal and the good days will out number the bad days.

    Remember, you don't have the diagnosis yet, and you're in one of the most advanced places in the world to get the best treatement for him. I would take the other's advice to think about going to talk to an objective 3rd party, even if it's only once or twice.

     
  8. You have chosen to ignore posts from Novembride. Show Novembride's posts

    Re: autism spectrum disorders - DS

    Stef - I know nothing of ASD.  Just joining the others in your corner.
    You have nothing to be ashamed about.  You are being honest about your feelings and there is no shame in that.  You recognize the hurt and you are working your way through it.  You'll get there.  My best to you and your family.

     
  9. You have chosen to ignore posts from WhirledPeasPlease. Show WhirledPeasPlease's posts

    Re: autism spectrum disorders - DS

    Stef, just want to jump in with more support. None of this paints you in a bad light, as you say, either as a parent or a human. You notice the "red flags" now, but you can't expect yourself o have diagnosed your son on your own. Like previous posters have said, ASD is fuzzy and scores of experts have spent years trying to understand the spectrum more clearly. 

    Your reaction is also very human and natural. Let yourself grieve without guilt, and don't think about telling family now if you don't want to. When you and DH are ready, they can know. 

    I've heard from friends and neighbors that this web site is a great reference: 

    http://www.autismspeaks.org/

    There are forums, explanations, and even articles on how to talk to family and friends.

     
  10. You have chosen to ignore posts from rama8677. Show rama8677's posts

    Re: autism spectrum disorders - DS

    Stef, I'm proud of you for writing your post even though it must have been incredibly difficult to identify and write down all of your fears. I bet you feel a tiny bit better for having done that. please continue to write down how you are feeling, whether it be here on the forums or in a diary for just your own eyes, because it is such a good way of getting in touch with your emotions. Best of luck as you go through the next steps in this journey. You son is lucky to have such an articulate, caring and loving mom!

     

     

     

     
  11. You have chosen to ignore posts from medfordcc. Show medfordcc's posts

    Re: autism spectrum disorders - DS

    Stef - you sound like you are having a completely normal reaction.  I'm just writing to say I'll be thinking of you.

    I think there must be support groups for parents.  That seems like it would be the most helpful thing since the other people will totally understand how you feel and you won't have to explain or feel like anyone is judging your DS.  I would suggest not ruling out therapy, either.  Sometimes a short stint is a big help - maybe with a cognitive behavioral person who would focus on actions.  Not an analyst type who will just listen - I sense that would irk you!

    and FWIW I don't think you're being a baby at all - there is always someone worse off, sure, but that doesn't mean your pain isn't real or important.

     
  12. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: autism spectrum disorders - DS

    DH doesn't think she's being a baby, either, but he says that because when she vents it forces him to confront his own similar feelings and he doesn't want to.
    ~~~~~~~~~~~~~~~~~~~~~~~~~~

    Discretion is the better part of valor.
     
  13. You have chosen to ignore posts from KMMZ1012. Show KMMZ1012's posts

    Re: autism spectrum disorders - DS

    Stef - I second someone's suggestion to look into Autism Speaks. One of my oldest friends from high school has a son who's autistic and I am in awe of the work she does with the organization - and with her son. She has an amazing network through the organization and the support she gets and gives has led her to some very warm friendships with people who get it.

    When her son was diagnosed, she sent out a very honest email to everyone, explaining the diagnosis and the therapies he would be receiving. He was around your son's age - maybe a little older - when he was diagnosed and I've witnessed first hand the great things early intervention (and it would still be early, 2.5 is not late at all) can do.

    I'm sorry you're in so much pain right now. And don't feel guilty about being in pain or upset or any of the feelings you're having. You are not a bad person. Your life is about to change in a way you could not have imagined and it's completely normal to have an adjustment period like this. I'll be thinking of you and your family and crossing my fingers for good things for you all.

     
  14. You have chosen to ignore posts from stefani2. Show stefani2's posts

    Re: autism spectrum disorders - DS

    thank you all SO MUCH for all of your support.  it has made me feel a ZILLION times better just sharing what i'm feeling and hearing all of your positive support and advice.  it's also, for whatever reason, helped me to be more supportive and a better person at home with DS just since yesterday.  we had a good last night and this am where i didn't stress as much and he acted much better which gives me hope.  i swear he picks up on my stress and worry and ends up acting differently when i don't control it well.  i'll check back in when we know more.  thank you again from the botom of my heart!  (sounds cheesy... stevie wonder!)

     
  15. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: autism spectrum disorders - DS

    Feeling understood is a powerful tonic.  So glad you shared and we could provide that to you.  

    You might consider talking to DH about how when you feel like your negative feelings are understood you almost magically become a more powerful and positive person.  Men are often taught the opposite, that if you acknowledge negative feelings it spurs more negativity not realizing that the truth is that the opposite happens.


    ~~~~~~~~~~~~~~~~~~~~~~~~~~

    Discretion is the better part of valor.
     
  16. You have chosen to ignore posts from Winter2011Bride. Show Winter2011Bride's posts

    Re: autism spectrum disorders - DS

    Stef, I don't have any insight on ASD, however, my DS (12.5) has ADHD. I know it's not the same, but I know first hand how people would think it was my fault that he had behavior problems. It's also something that many people don't think exists at all and they say it's a made up condition. I understand how you are feeling and know that what you are feeling is normal. When you are ready and know what road you need to take, you will be able to share it with your close circle. I'll be keeping your feelings in my thoughts and prayers. Good luck with your next appoinment.

    ----------------------------------------------------------
    I find your lack of faith disturbing
     - Darth Vadar
     
  17. You have chosen to ignore posts from wasMM379. Show wasMM379's posts

    Re: autism spectrum disorders - DS


    Hi Stefani,

    As you know from my other posts, we recently went through the same revelations with my DS, although at a little bit of older age.  Please know your feelings are normal and I still feel them at times.  I went through some of the same emotions/reactions you describe.  I will say, once I accepted or in ways "owned" his diagnosis, got info through OT and speech therapy, and my own research, I have really been able to better be able to understand my son, predict/anticipate his behaviors and needs in situaions, and be more mindful of life skills coaching.  Honestly, it was like a roadmap to my son that I didn't know how to access before.  Also relieving was when I started talking to my friends and family about it.  I am a Type A achiever also and at first it was tough to acknowledge concerns about him.  But, once I did, it brought so much compassion, relief, and the majority of my fears about reactions were wrong.  Also, I realized it eased my anxiety in so many situations b/c everyone else was starting to understand him better.  And it wasn't a huge touchy feely emotional fest wtih most folks, just a practical conversation of "so here's what's going on."  Honestly, EVERYONE knows SOMEONE either on the spectrum, or in EI, or needed speech therapy, or had a motor delay.  Once I just put it out there, I realized how easily everyone else can talk about it without it being emotional or critical, and I stopped avoiding people.  Furthermore, I was more relaxed doing things with DS. I didn't worry about judgments about my hyperactive son's behavior at a birhtday party or "why can't DS just say hi and be polite to Great Aunt So and So like his little cousin can."  Now we know: it isn't about him being out of line, misbehaving, us being "bad" parents, not strict enough, or my own go-to self-criticism before the diagnosis of "it's because I work and don't spend enough time with them."  It is just about how his brain works right now, and the therapies are going to help his brain and the way the rest of the world is, mesh a little better.  Loud open spaces turn him into a hyperactive, hard to control little guy, but with some OT techniques, we really know how to help him calm his "engine" down in those situations, for example.  Understanding that this is not in his control right now nor mine, it is no one's fault, but there are things we can do to re-teach, train, redirect, cope that can significantly improve things over time, has been a helpful way to look at it.  All those "autistic" behaviors you mention, so many are about sensory input, and are really just self soothing or self stimulating coping strategies.  Once I got more education from our OT, I really exhaled and it helped me not fall into the habit of stigmatizing them. 

    To be honest, the only irritating response I get is when folks in our family or friend circles don't believe the diagnosis or get on a soapbox about "everyone being diagnosed with somethign."  Sometimes they just don't see it and don't believe it "not your DS.  He's just energetic.  He's just a boy.  Not everyone is a talker.  He just is particular about his toys..." most likely b/c they don't have all the facts.  I don't like having to rehash the symptoms/difficulties and defend this diagnosis that I myself am still accepting.  But, no one has ever been critical, uncaring, or disrespectful. 

    Do I embrace everything anrd champion the diagnosis on my sleeve all the time?  No, I am just not there yet.  I couldn't accept a friends' invitation to Autism Awareness Day at the zoo with free admission for ASD kids.  Just couldn't do it... and I don't know why.  I don't have awarenss stickers or bracelets.  I don't access the message boards on the autism sites regularly.  For me, they are too overwhelming and frankly b/c the spectrum is such a truly broad spectrum, so much of the information out there just doesn't apply to my son.  It isn't my son's whole identity, it is just a part of the picture, so maybe that why I shy away from hugely identifying.   Maybe one day I will be more public about it, but the first step of just starting to talk about it with closer people in our lives was helpful.  Acknowledging to my boss why I was distracted, acknowledging it to my supervisees, friends, family, etc. has truly taken a weight off my back.  Their compassion increased, so many helpful stories were shared, and my anxiety decreased. 

    Just in recollecting some of your posts around concerns for your son and from what you posted here, I wanted to say I see so many positive signs already.  First, he has siblings and is already in a childcare setting with lots fo social exposure.  Even if he isn't able to fully participate yet, just being there is a huge plus.  Second, you were great on catchign this at a young age and don't kick yourself for not catching it earlier.  We just got diagnosed at 4 and my son is already making great progress without even the full regimen of recommended treatment in place!  It is so difficult to know as a first time parent and so many of the signs are difficult to detect until they are a little older and in a pre-school type setting, it sounds to me like you acted as soon as you had enough questions/evidence.  I am not a diagnostician nor do I know your DS, but the fact that it was confusing and there weren't always clear cut consistent signs, in my own understanding of this, are actually potential positives - a lot of good foundations ARE there, just not consistently.   It is a spectrum and it is fluid b/c treatment, especially starting young at your son's age/stage, can be hugely impactful.  I am not trying to give false hope, but once you start talking a little more to others and start therapies, you will realize this is such a common diagnosis and the room for improvement is huge.  Please don't jump ahead to 20 years from now and picture your son still behaving the same way he is today, or conjure up any recollections of older kids or teens you may have known on the spectrum and assume your son will be exactly like them.  Every case is so unique and the amount of intervention and therapies available now and at such an early age really improves prognosis and future functioning. 

    I wish you the best.  Please let me know if I can be helpful with any questions/concerns that might arise. 

     
  18. You have chosen to ignore posts from CT-DC. Show CT-DC's posts

    Re: autism spectrum disorders - DS

    "Remember, your sweet boy is still your sweet loveable son you carried inside you.  You know him. Now you just have a better way to help him make his way in the world.  You will have better tools to guide him and help others see what a sweet wonderful boy he is and will become."

    Oh, wow, lissa, thank you for posting that.  Stef and everyone else, cut this out and hang it in the bathroom, put it by your bedside, wherever and read it at least once/day. 

     

     
  19. You have chosen to ignore posts from stefani2. Show stefani2's posts

    Re: autism spectrum disorders - DS

    hi all - the update is, he was diagnosed with ASD.  now i'm developing a plan to line up all the stuff that was recommendd by the dr - speech therapy, OT, ABA therapist - ugh.  wondering if we should reconsider the school he's signed up for in the fall (it's montessori and the dr didn't recommend that for him).  lots to do!  DH thinks we should get a second opinion.  the dr is basing the diagnosis on seeing him once last week (he was sick and his non-functional play was extreme during the meeting (spinning toys) and he barely talked), talking to his teachers and talking to his speech therapist.  the speech therapist has been telling us she doesn't think he has ASD.  when the dr told us what the teachers told her about him in school, i was stunned - he sounded like a totally different kid with definite ASD signs at school.  part of me doesn't believe he's like that, but then part of me thinks he must act that way (i.e. worse) when he's not around us.  it was very shocking re-reading the notes i took during the meeting - i mean i have never seen him act so, well - "autistic" as he sounds from their point of view.  we'll try children's for a second opinion but that's going to take months, so in the meantime his life will be totally turned upside down with all this stuff.  :(  i think it's for the best but it's pretty daunting.  and difficult with a twin sister and 3.5mo to consider at the same time.

     
  20. You have chosen to ignore posts from framerican51008. Show framerican51008's posts

    Re: autism spectrum disorders - DS

    Best wishes to you and your family, Stef.  It sounds like you have some big changes and decisions to make.  Try to take it one day at a time and don't forget we're always here!

     
  21. You have chosen to ignore posts from luvRIboy. Show luvRIboy's posts

    Re: autism spectrum disorders - DS


    I think we should just keep reposting Lissa's wonderful words...know that we're thinking of you and that we're here if you need us.

    "Remember, your sweet boy is still your sweet loveable son you carried inside you.  You know him. Now you just have a better way to help him make his way in the world.  You will have better tools to guide him and help others see what a sweet wonderful boy he is and will become."

     
  22. You have chosen to ignore posts from wasMM379. Show wasMM379's posts

    Re: autism spectrum disorders - DS

    Stef, I know you have had a discouraging experience with EI and are likely not interested in using an EI agency before the age of 3.  However, after 3, your providers will likely be wanting you to connect with your public school system to see if DS is eligible for school based services such as OT, SLP, and ABA for social skills.  He probably will be eligible and you will probably be encouraged to enroll him into public school pre-school at least part-time (not sure what the pre-school programs look like in your town. There is a huge variation on part-time/full-time).  You can also probably enroll DD into public school pre-school as most accept "peers" for integrated classrooms, or you can keep her in Montessori.  We are moving and by the time all of our testing and evaluations were completed, and we had an IEP, we did not get to enroll our son this past year, however, he will likely be in our new town's pre-school at least part-time and then bussed to our current childcare center, which I am glad so he can keep some stability and familiarity with his classmates and teachers. With this diagnosis, they qualify for free in-town transportation.  Therefore, regarding your questions about the montessori school, you may want to make a quick call to your public school system to learn more about special ed pre-school services and at what age he'd be able to enroll.   Time is of the essence on that phone call since the school year is ending, as many of the appropriate contact people for public school pre-school are unavailabe in the summer, so depending on your town, you may just want to place a call today or tomorrow to get more information.  The more info you have about options, the more it may help in decisions moving forward.  That may help shape what you decide about that other pre-school for next year.  

     
  23. You have chosen to ignore posts from fakinbacon. Show fakinbacon's posts

    Re: autism spectrum disorders - DS

    Stef, I don't have kids yet and I'm an infrequent participator on the boards though a frequent reader, and I just think that you are doing all the right things for him.  Even if you have him re-tested at Children's, and it comes back with him not on the spectrum, it can not hurt to start the various therapies with him now - he'll either be bored or it will help.  He's so young that although there will be some change in his life right now, it's nothing that will challenge him into the future, only help.  And now that you have a diagnosis to go by, whether you think it's final or not, you have so many tools at your finger tips to help him along.  It's actually a really great thing.  And what you are doing is really great...I just want to applaud you.

    And I'm only saying this from first hand knowledge of a similar situation, not regarding ASD specifically (diagnosis of borderline intellectual functioning - aka an IQ between 70 and 85) was not diagnosed in a child I know until the age of 16 because said child's parents did not want to acknowledge it.  If this child had been on an IEP in school, participating in various forms of therapy, and had been part of the road-map designed for children with similar issues beginning at a young age, many many more doors would have opened along the way.  But facing this for the first time (and being diagnosed) during Junior year in high school makes it almost too late - most of the learning is already done (child has almost genius level memory abilities, specifically in regard to patterns and numbers, that were never focused on and made into something practical for all those years), not to mention how much it hurt the child to learn so suddenly about the diagnosis, and what the child probably won't be able to participate in the future (college), all at the age of 16.

    So my heart is with you and I know, since you are already confronting whatever it may be so early, that your son is in the best of hands - your hands.  You and your husband, your son himself and his siblings will only know him, understand him and love & support him better because of it.

     
  24. You have chosen to ignore posts from wasMM379. Show wasMM379's posts

    Re: autism spectrum disorders - DS

    Oh I forgot: If you do want a second opinion, but don't want to wait the 4-6mos for Children's (we are on that waitlist - our diagnosis was from a neurologist), you might consider looking at The Integrated Center for Child Development in Canton (also Newton).  I have heard FABULOUS things about them for assessment as well as treatment planning... which of course means they are out-of-netowork for my insurance and not an option for us unless we decide to private pay.  Two "experts" (a special ed advocate I spoke with and the ABA evaluator from our public school) rated ICCD's assessments and reports with young ASD diagnoses as superior to Children's and MGH if moving forward with IEPs in the future.  I actually have a pending appt with ICCD if my appeal to have the assessment covered by insurance at Children's (in-network) doesn't go through.  If I'm going to have to private pay anyway, might as well do it at the one highly recommended to us. 
    But I agree with fakin, it can't hurt to proceed with services based on the current diagnosis, rather than wait for a second opinion and delay services.

     
  25. You have chosen to ignore posts from misslily. Show misslily's posts

    Re: autism spectrum disorders - DS

    Stefani - I'm sending a huge hug your way. When I read your post it sounded just like me four years ago. When my twins were both diagnosed with moderate hearing loss at three weeks old, I thought their lives and mine were over. DH fell into depression and wouldn't even speak to me half the time. It was horrible and dark and filled with tears. And it didn't get better overnight. I didn't start to feel comfortable until they started talking at age 2.


    Here we are at four years old and we're like a totally different family. Loving, happy, laughing, crying, - just like everyone else. Do I still get sad that my kids have this permanent disability? Of course I do. But I also know that we're all going to be just fine.

    So grab the reins and get your wonderful son whatever he needs to succeed. Second opinions are a great idea - starting the therapy is a great idea too - it can't hurt.

    I have two friends who MOVED to towns with really great schools to get their kids the services they need more easily. So if you're still in Boston - it's something you might consider. One family I know went to Wellesley and one to Weston. They both say it was a huge hassle, and the best thing they ever did.

    Finally - for the longest time DH didn't want anyone to know about our kids hearing loss. I thought it was totally stupid, but complied to keep the peace. So we told people when we both felt comfortable with it. In the end I think he had a point. There was no reason to make a big announcement. There is something to be said for keeping things in the family if it makes you more comfortable. There is an awful lot of oversharing going on in the modern world.

    From one twin mom to another...hang in there! You can do this.

     
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