The Autism, ADHD, Special Needs Thread

  1. Hello Parents --

    I was wondering if there are parents who would like to talk about their experiences and feelings on this thread. I would like to see a thread where parents of special needs children and children with medical issues can get together to rant, vent, discuss and share. I'll start:

    I'm SAHM to a 5yo child PDD-NOS, nonverbal. My ds is doing well right now and we're proud he's able to take a small step at a time. It's been a challenging several years tho. I know the phrase "there's nothing I'd rather be doing etc" ... but.... there are times I feel as if I'm missing out on something out there that, according to the world at large, that's suppose to be some great journey that everyone else is on. Do anyone ever feel that way, especially when they are the sole caregiver 24/7 to their children? Is raising your SN child the "journey" for you?

    For instance, we all went into a restaurant last nite hoping to have a sit down meal (this happened only once before); ds became upset. While he seemed to enjoy the low lights and atmosphere when we entered, he no longer wanted to be part of it; sensory issue. So we ordered to go. This is the best we can do under the circumstances. I was ok with it but was a bit moody later.... :p

    My achilles heel (aka my downfall) has been wondering if I'm missing out on travel and the more worldly experiences at my age. I spent my 20s and 30s working hard, no travel. Now I'm in my 40s, the thought of travel does not seem possible at all and all the rewards I have been looking forward to seem out of reach. I have regrets and resentment (for not taking advantage of travel and dining pleasures early in life, and because dh does not share the same desires). Am I being selfish over missed opportunities?

    Are there ways to balance your life so that you can have both the joy of raising your special needs child(ren) AND have freedom to do the things you want to do, even if it is some soul searching? Is it a mental thing? Or simply a matter of scheduling, arranging things so they happen? ....:sos:.... I cannot seem to get a long enough reprieve or respite from my mental fog to do something positive!
  2. Big hugs Rainrowan.

    I normally don't come into this part of the forum, but the Down Syndrome thread caught my eye on the main page so I was kinda skimming though.

    Autism is tough. My son is in the process of being diagnosed, but I know he has it. He has Down Syndrome and Autism is pretty common with these wonderful kids.

    Dont' get me wrong. As much as I love my son, we still have incredibly tough times. We've lived in Australia, Singapore, Holland (twice) and have just moved back to Australia with him (and now, his younger brother). During the early years it was extremely easy. He's be happy to sit in his stroller when we travelled but as he's getting older he's more difficult to contain.

    I know it's easy to feel resentful on things that you've missed out on. Sometimes I love feeling like a normal parent when I've only got my youngest with me - getting no stares, no special treatment, but the moments I really cherish are with Oscar - he does one simple thing and it keeps me going for days. Yesterday, he blew into a whistle. Simple. But it means so much to see these kids moving forward. Even now, I'm tearing up, thinking about this.

    You know, the most miserable person I know is my sister. She has a beautiful family, who love her. She has her health, as does her hubby and kids. but it's not enough. I really feel sorry for her that she's unhappy - but that's her choice. Nothing will cheer her up and sometimes I get so frustrated that she's "got everything" when in reality it's not enough for her. I don't know what she's looking for, but I doubt she'll ever find it. Sad.

    My hubby and I try to take one (or two if we're lucky) trips a year overseas or locally. We're lucky that we can fly one of our parents over for a week to watch the kids whilst we take a much deserved break. There are also lots of babysitters who are interested in working with kids with special needs - I know it takes time to trust someone but maybe dinner out nearby for a couple of hours might take some of the pressure off.

    Please PM me anytime. My son having DS, Autism and severe hearing loss isn't ideal, but it's our normal. This is the way our family is and the way it will always be. Selfishly, sometimes I watch the TV and see families that have it SO much tougher than ours and are really thankful that it's not worse.

    Hugs again Rainrowen :flowers:
  3. I just wanted to say that all you parents are simply amazing. I do research in the area of autism...and I am always blown away by the positive outlook on life that parents have (that is part of some of the research I am doing)!!!! The children are amazing too and so special.....working with children with autism was what drew me into this field!

    I just wanted to tell you all that :smile:
  4. Yes, I can relate! I was overly anxious about being the perfect family with my firstborn. With ds2, it's been a blessing in disguise. It knocked me off my pedestal and yes, it's our normal too now, I'm not devastated if others react harshly. We tell others that "ds2 is, what he is, and we love him" and every thing is good.

    It must have been so sweet to hear your ds blow a whistle! I bet you were on a bit of a *high* over that for a while. :smile: Keep me posted on his diagnosis. I remember the relief when a doctor suggested I seek out diagnosis. I just didn't have a name or idea of what ds2 had until he was almost 3.

    You are right. I'd much rather focus on memories of my child's accomplishments than to yearn of desires that never even materialized. Recently, I observed ds2's eyes and smile follow another child on the playground. His contact with people are infrequent. It made me so happy to have caught it -- it was a moment I was able to observe, realize this little kid of mine was emerging in subtle ways.

    Thanks, Cal. ((hugs too)) Your response meant alot to me. It was very balancing for me. I wept a bit before I started to type. I'm the type who appears balanced, stoical, dedicated to family, friends -- I have trouble opening up completely. I am able to cry on the shoulder of a parent of an autistic child I've just met, but cannot bring myself to cry on the shoulder of family or friends.

    I had noticed more and more I was channeling personal frustrations into areas (relationship conflicts, lack of creativity, procrastination with choices/chances) that don't benefit from it. I don't want this specific issue to affect my own outlook or choices anymore. It feels stagnant... too easy to become someone who is unhappy with everything.

    I will come back to say more later... I've been up all night with ds2, he decided he had the house to himself while everyone was asleep and had a blast. Hope this post was clear.

  5. I want to say that YOU are amazing! People like yourself are special kind of people. I am so appreciative and grateful that my ds2 has the kind of educators so dedicated at their jobs. Trust me educators and researchers like you are the beacons for our children's future!
  6. Thanks for starting this thread! My son hasn't been diagnosed with anything yet, but I've been through what seems like a lifetime of medical emergencies and what not and he's only 8 months old/6 months gestationally.

    He was born 11 weeks early and has been through all of the preemie related things- blood transfusions, spinal taps, hospitalization, tests, medications, etc.

    The worst is the possibility of craniosynstosis (sp?) which would require massive skull surgery. The heart breaking part of this whole affair is that it's not even preemie related. My son just randomly might have it (odds are 1 in 2000). We will be taking more xrays in March to see if we need the surgery.

    Medical stuff aside, he's a very, very high need baby. We thought it was colic at first, but he's still crying like there's no tomorrow and he's well past the colic age. Everything is difficult with him- feeding, entertaining, sleeping... it's tiring, but I know it's worth it in the end.

    I just get frustrated sometimes because some people have it so easy, and I get jealous of my friends who brag about having healthy babies. Who does that? Especially to the mom of a not-so-healthy one?

    I am having a hard time with this. It's RSV season, so I'm basically housebound. I've gone as long as 3 weeks without setting foot outside of our home. Before our doctor approved vacation on Feb 13th, my last meal outside of my home was in August. I tell my friends that I went almost 6 months without eating in a restaurant or even a fast food place, and they think I'm lying.

    Even something as simple as reading a book takes forever now... you'd think I'd be able to do it because I'm at home so much.

    I feel so.... lost. Like my identity and dreams no longer exist. I make so many sacrifices that a lot of people take for granted... my first haircut in a year was only 2 weeks ago. I had to plan it and check DH's schedule to make it work. I look forward to slowly gaining more of myself back as my son learns to be more independent.

    I think with communication and planning, your spouse might be willing to take the reigns for a week while you take some time to yourself on a mini-vacation or something. Do you think he'd be receptive to that?
  7. Hi there - I just wanted to join son is almost 17 and has ADHD, mild Dyslexia, mild Dyspraxia and his Auditory Processing skills are weak. He was diagnosed when he was 7 only because I took him to a Specialist - the school said he was fine blah blah - we are in the UK. They didn't believe the Specialist - and when we requested that he be given extra support - they refused. It was horrible. Eventually we removed him from that school and he went into Private (fee paying) school. He got on much better, but wasn't ever where he should be in terms of learning. When he moved to his next school i.e., pre-Senior he had to travel to Edinburgh - 35 miles away. He enjoyed it and fared well for his first year, then he moved to the Senior building and at first was fine - then it all went pear shaped. No-one would give him the support he needed - he needed to have additional learning - but it wasn't given. Didn't matter what we tried. Eventually the 2 hour plus travelling each day got too much - and we brought him to a school which had opened near home. Bad mistake - it was very small very limited resources and the education was terrible. However, we were promised a 'reader and a scribe' for his exams. They then said that wouldn't happen. One day they had a trip out to a swimming pool and on the way back in the mini-bus there was a real lot of noise with the pupils - the teacher stopped the minibus and said it had to be quiet before she moved. The noise was awful - my son got out of the bus - he hates lots of noise - the teacher drove off and left him!!! Yes - on his own. I went mad - he didn't go back! He is now at a local State school and its awful - no help, no nothing and in addition he has been 'beaten up' by a gang of 7 inside the school grounds. School know about it - they stopped the fight - but haven't don't anything about it. Its soul-destroying.

    I feel that ADHD, ADD, Autism etc., just isn't dealt with properly by the professionals i.e., teachers, and the like - its so unfair. These kids deserve better - they aren't stupid - they deserve to be treated with respect. Its time more was done for these kids.

    I remember early on - my son played ice hockey - one of the mothers there said - they thought he was badly disciplined - God - I disciplined him SO much - she didn't realise he had a 'problem' - thats the thing - its a hidden 'disability' so to speak -

    My son wasn't medicated, then he was, then it was stopped and then back on another, he hasn't been medicated for a long time - and TBH - for us the medication didn't improve things - concentration maybe - but I ended up with a kid who was depressed - how could I continue to medicate a little boy who said 'he wasn't having fun'?

    Right now he has exams this year - and hopefully he will manage to pass some of them. He is musically gifted - so he has that with him.

    I just wish people would understand these kids -

    I'm happy to discuss any of the weird and wonderful things which have happened to both him and us over the years............maybe some of it will help others -
  8. Awww........honey, I'm sending big hugs your way.

    People are funny. We actually lost some friends when they learnt about our son, others starting harping on about how fantastic their kids were (yeah, got very jealous over that) but the most amazing support came from the people we weren't expecting it to come from. My step-sister and I never really had anything to do with each other. Her oldest son has Autism and she has become SUCH a great friend.

    I had to google craniosyntosis - these doctors are doing an amazing job of correcting it. When will they know if it's definite (hope you don't mind me asking)?

    It's easy to feel lost and frustrated D - it's overwhelming what you're going through, being stuck inside really isn't helping. Do you have family or close friends that you can leave DS with, even just for an hour so you can get some fresh air into your lungs? Please don't isolate yourself.

    Also, have you tried baby massage? Or maybe getting into the bath together (with a drop of lavender oil)?

    Big hugs!
  9. i just wanted to say a big hello to all you wonderful parents! :smile:
    I Am a student and a teacher. I am currently working in an inclusive kindergarten classroom and I have started my masters in early childhood special education. I also really want to do the advanced certificate my college has in ASD specifically
    I find the children on this spectrum to be SO wonderful, so special and so under appreciated.
    I think that with the right attention these children can grown and learn so much and sometimes i think schools just do not offer the proper attention they need. I truly hope i can be there to provide that for just one kid, and i will feel accomplished

    I applaude all of you because as much as i work with ASD children and adore it, i can imagine 24 hours/7 days a week as a parent it can take quite a toll and you women deserve that night out to dinner, that manicure and that moment to yourselves make sure you take it :smile: !!!!

    (btw i am reading a GREAT book right now called There's a boy in here by Judy Barron and Sean Barron its written by the mother of an autistic son and her autistic son who is now grown and reflects back on experiences he remembers. It really gives such an honest look into this mothers feelings while raising her autistic son, and then you have these places where he reflects back on an experience and how he saw it. Really excellent book!)
  10. Cal, I'm sorry that you lost friends, but sometimes it brings out their true side, you know? I'm glad you and your stepsister were able to bond. It's funny... the same thing happened to me and my half sister. We were both due on Sept 5th, (her in 2006, me in 2007) and we both gave both prematurely (she was only 6 weeks early, I was a little over 10 weeks early). Even though she used to hate me, she's now one of the few people that truly understands what I'm going through.

    Right now we just need to keep doing xrays until he's about 18 months old, because when the doctors examine his head with their fingertips, it feels closed (both fontanelles are already closed). The last xray showed that it still has a hairline separation. As long as it isn't fused completely shut, he won't need surgery. If it does fuse shut, we'll probably have to fly to Dallas for a few weeks (don't know how long it will be).

    It's funny that you mention support from family and friends. :p We moved from Hawaii to Texas in the middle of my pregnancy, only one month before I gave birth. So I have no friends, no family, and I'm going through one of the most difficult times of my life. Haha... I could have one hell of a pity party with my situation. (but it's ok... I keep in touch with my Mom and best friend pretty regularly)

    DH's friend' wife came over one day, and she said she'd watch the baby while I got some sleep. When I came downstairs only 1 hour later he had a red mark on his forearm (about 1 inch long). We got it checked out, and the doctor said not to allow her near him again. :cursing: I was ready to kill her. So I don't really trust hiring someone or having another person take care of him while he's so young and defenseless. (He's a really high need baby so people will explode in frustration. As his parents, we love and adore him, but others don't see it the same way.)

    My baby loves massage! He starts smiling whenever he sees the oil, lol. I think bathtime and massages are his favorite parts of the day. We don't get into the baths together, but that's a great idea. I'll look into it more. :smile:
  11. Big Hugs, Demosthenes.

    If it is craniosynostosis, it might account for his discomfort and crying? DS2 developed a severe slant to one side of his head before age of one. We feared he'd need to be fitted with a cranial helmut to correct it. I remember the uncertainty and fear I had, the doctor simply said it would correct itself. But I worried for quite some time. I hope you get an answer soon, because once you know, it will almost be a relief to know what needs (or needs not) to be done next.

    I know very well the feelings you are going through. It's a challenge for women in their first year of motherhood, and truly challenging when you have a high needs child. My ds1 had sensory issues to lights and touch early in life. DS2 has medical paperwork that takes up 3 huge binders.

    Since no one in my family experienced this in their own children, a few times my ability as a parent was questioned and it was tough trying to convince I truly had a high needs baby and not sound like I was "not dealing with my responsibility" (according to my mother) and "being a pushover" (according to the nasty pediatrician!). My SILs all had "perfect" unfussy babies who were healthy and a breeze to raise. I wasn't jealous, but I always felt inadequate when they would tell me how easy it's been.

    It hasn't been easy for me to go off on my own. DH is receptive to my taking off, but I have to admit, I think I've become too dependent on the kids to go off alone anywhere.

    I know what you are going through; there's are lots of moms like us facing challenges w/ their kids, many all on their own because there's not enough emotional support. It is not easy!
  12. Oh thank you for posting and sharing. Your story of your son is heartwrenching, there is so much you want to do to protect him and only you know your son the best, more than any tests, exams, reports, etc the professionals do...

    The more I asked, the more I was told not to worry, that I'm wasting my time, that my child was just being anti-social :s One day another ped on call asked if I thought my son might be autistic. I had a vague idea of ADHD but not nearly enough about autism. It was the beginning of the journey to help my ds2, it was a shock but also a relief know there was a name for what he had. He was formally diagnosed by a neurologist the same year.

    I persisted and refused to "waste my time", eventually we discovered ds2 had bad GI issues associated with his autism as well as multiple severe allergies and hence his crying, tantrums which aggravated his autistic tendencies.

    I was upset by professionals who dismissed my concerns. If I had continued to believe them, my ds2 would have been too old to receive the services for early intervention. We've been blessed with his education and educators but now that he's ready to transition to a new school. It's been a little rough going, can't seem to find anyone willing to give us early referrals to private schools and I'm afraid he might miss out...

    There are no checklists for parents on where to go, what to do. I've only found out the past year there are state services available for children with disabilities in my area and now I'm looking into respite and things like adaptive equipment and home modifications. I wouldn't have known this was even possible.
  13. A big hello to you too! What a great thing you are doing for these children. It warms my heart, truly... I feel educators who love their job know what they need to do, tirelessly and patiently. Eventually there comes improvement. It can be subtle, like eye contact.

    I enjoyed Judy and Sean Barron's book too... I like how they each gave their own interpretation of their experiences. I also enjoyed Donna William's autobiography, herself an autistic woman. I *finally* realized what ds2's mind might have been going through. Something simple as walking into a crowd is frightening, it's not just the sights, it's trying to process the images all at once.

    For example, we were at large event at the civic center and there were balloons in a booth all bobbing up and down. I then realized that to ds2, they were frightening, not exciting, they must have looked like all the hundreds of faces he was seeing, balloons like heads bobbing up and down. He was in a sea of them.
  14. rainrowan - God you go through so many feelings - you feel inadequate, which isn't helped by people who say that your child is fine - no problems. Do you honestly know any mother who would say she thought there was something wrong if there wasn't? I have three kids - and have never ever compared them - but you learn to know what to expect. Here in the UK the education system quite frankly fails children if they are not 'the norm'. Which is quite sad. We were fortunate in that we were able to afford to send our son to Private School - we in turn sent the other two also. There are services, but I found that although I was referred to Occupational Health, and to Psychological Services - because I appeared to know what was going on and had researched ADHD etc., and was able to relate to my son - I was told 'you have a good handle on things'. So got no help, no services - nothing. Fortunately during my research I found a wonderful Psychologist who is from the US - and he lives just south of Aberdeen. He of course charges for his services, but I've never found anyone who can relate to my son quite as he does. My son resents having to go through interviews with professionals - or rather he did - but is very happy with this guy. We don't see him much - we see no-one else. The services here have failed him - I'm still fighting for him and he is 17 next week.

    Here in the UK - ADHD is still relatively misunderstood - and although the specialist we have in our local hospital is actually one of the leadiing guys in the UK - he is all too ready to prescribe medication. Its been reported on the News channels about it. Its the easy option - it suits the doctors and it suits the educational establishments - i.e., the children are being controlled. I think the problem goes much deeper than that - and medication doesn't work for everyone. Its not an illness - its actually something that your child is born with - ADHD kids can be spotted - just give them an MRI scan - they have a 'marker' in or around the brain which points to it. I think too many people still think its something which comes from bad parenting.

    You yourself said that you found people thought it was your parenting - OK some kids are a pain in the backside pure and simple and its because of the parenting or rather lack of it. There is though a huge difference in that and in kids who actually do have some problem. I think the fact that we have to endure, as parents the criticism of others when they question our parenting skills - is both hurtful and irresponsible.

    I hope that you know that you are not alone - we can all help each other. Just remember that your kids didn't ask to have difficulties - and even though they do - its neither theirs or your fault. What you must do is make entirely sure that you get the best help and advice you can. If that means jumping up and down - then thats what you have to do............hey I've done it - it hasn't always worked - but no matter what your kids as special - and they deserve the very best this world can offer them - whether they conform to 'the norm' or not.

    I could write a book on the things which have happened to my son over the years - and perhaps one day I will - there have been highs and lows and good and bad - tears and laughter. One regret I have is that the very happy laughing smiling little boy I once had - and he was, such a joy - everything was fun and life was for living - right now he is virtually the opposite - school is a chore, bullies have gotten to him - and his laughter doesn't ring out nearly so much. I understand him - his father doesn't - but sometimes I think that mothers know their child much more than the father in any case. Life for him right now is hard - his way to deal with it - plays the electric guitar like a 'pro' - he sees himself as the next 'Slash' - Guns'N Roses blast out round the house - and he lets out his frustration that way. I've told him - dyslexia is a pain - but there are so many dyslexic success stories - Richard Branson, Harrison Ford, Robin Williams etc., so it doesn't mean you fail. The ADHD and the other problems - never go away - you learn to live with them - but honestly - my 'lot' isn't nearly as bad as some of the girls who are posting here -

    I just hope that by posting they can find some help in the form of our common desire - which is to do the utmost for our kids - no matter what the adversity is...........come on girls - lets all support one another - and for me - I'm through the worst - so I'm here for each and every one of you............just 'holler' when you need me!:heart:

  15. OMG! That is what I'm most fearful of, people won't know how to cope and will fling my boy down or hurt him... :sad: and I stay with the kids so much b/c I worry.

    I'm sorry you are so far away from family, but as long as your mother and BF are on the same page as you, it helps so much!! Hang in there... so stressful with the move and pregnancy... I just want to say the first year is hard, but you'll eventually go into this mode where you make the energy and effort to meet the challenges. Being a parent and being a parent of SN child are both hard, it's the level you're meeting the challenges at, it's a different level.

    And keep that woman out of your home! :cursing: