Does Anyone Have A Child On The Autism Spectrum? Share Your Life, Thoughts & Hugs....

  1. Hi everyone - I have four children, 2 girls and 2 boys. My third child, is a boy. He was identified when he was 3 as being "high functioning autistic." We enrolled him a special program - a very "least-restrictive" environment...and to say that he's grown over the last few years is an understatement. He used to watch the water run from the faucet for hours...carry little dimes in his hand and cry when there was a little spot of dirt on it....he wouldn't really socialize with anyone.....and never never never would be able to pretend-play. With early intervention, I feel that he's a different person. He never stops does get a little repetitive sometimes - and he still self-stims, but only in terms of being a little jumpy or "zoning out in class" (he's in a "transitional Kindergarten" class of 6 that's mainstreamed for a couple of hours in the morning, and then brought back to their class in the afternoon - we're hoping to mainstream him completely by 2nd grade....
    He wanders around the playground still though. I see him - he's not unhappy - he's bouncing around in his own world...skipping and talking a lot to the teachers. But I feel sad because it seems like the other kids are so into these little groups.
    People are amazed by him. Just as a person. Some people don't even know he's autistic. But I know that's his diagnosis. I even tell myself that if he was observed now, he probably wouldn't even get the same diagnosis, but then he'll go and still do "things' like the battery alarm went off on a cell phone somewhere in our house the other day and he was covering his ears and SHAKING - he was sooo scared - I had to turn the house inside out to find it.
    He's academically very strong, but I know he's got a long way to go. He pretend plays now with his siblings and he's an absolute joy to be around. Sometimes the screaming when he doesn't get his way, or his pickiness in eating gets to all of takes a lot of patience and time......and I always hope and pray that he will have a normal life - a normal "marriage, kids, job, etc" and hope hope hope hope when he sniffs my arm and sighs "oh Mommy - you smell so beautiful...."
  2. I dont have any children on the spectrum myself but what I can tell you is that you have one of the most inteligent little people in the world.

    I am a pre-school teacher (in the UK) no longer working as living here in the US (visa restrictions) but in my time I have become fascinated by all levels on the spectrum.

    I know it will be really hard for you at times and for this I applaud you highly, but from your post it is clear you have taken all the right steps to settle him into mainstream which is where he belongs.

    Your son is the first I have known of to have a fascination with water and being clean, although many children I have worked with would never play with playdough or handpaint.

    I know what you mean about him wandering in his own little world but like you say he is happy-you must always believe this because as you know he is happy.

    Good luck to your son in his future, hugs to him for being such a special person and hugs to you to for all the hard times, laughter and tears and for being a wonderful parent.

  3. My son has been to neurologists over and over, with no firm diagnosis. He clearly has autistic tendencies (per several neurologists), but is highly functioning in a social sense, which generally nixes an autistic spectrum disorder. But he has the speech characteristics, physical delays, self-stim behaviors (MUCH better now) and many other tendencies common to Asperger's/autistic children.

    We've focused more on the developmental delays by enrolling him in early childhood programs, special help for speech, physical therapy, etc. He is now 4, almost 5, and he will be mainstreamed into standard Kindergarten next year, while still receiving adaptive phy ed and speech help.

    He is a completely different child from who he was even a year ago, and I cannot emphasize enough the difference early intervention can make (especially in mild/high functioning cases, though it is crucial in ALL cases). It is likely that few people will notice he is different from other children, and I am confident that while he may always be slightly unique, he will be able to lead a "normal" life (school, higher ed, marriage, children, etc.).

    So many parents have such enormous expectations for their children in terms of sports, academics, extra curriculars, etc. and it is hard for them to imagine the tears of joy I get just thinking about my child being mainstreamed in school. How ecstatic I am that he will likely be "normal". After 4 years of doctors, specialists, neurologists, evaluations and interventions, just having a child who can function adequately in a standard classroom is such a joy.

    Never, never, never again will I look at a child "misbehaving" or throwing a tantrum or repeating behaviors or shaking their head with a puzzled or disapproving glance. 5 years ago I couldn't have imagined why a child would do those things or how a parent could "allow" it. Raising awareness is SO important.

    Austistic spectrum disorders have become more and more common in recent years. It is scary how high the rates have climbed. Everyone needs to be aware and involved in finding the solution!
  4. MY son is 5, he has been diagnosed moderately autistic, he has MR and CP. I think there are probably quite a few of us with kids on the spectrum on TPF, and this thread is a great idea. It always help to talk to other people in the same situation, offer a hug, tips etc. Thanks Jchiara and your little boy sounds like an angel.
  5. HauteMama, I am very happy for your son, the first day of Kindergarten is going to be something really special for him and for you. Best wishes to you both!
  6. Like most of you, we found out our DD had autistic tendancies early - around 2 years old. We had her evaluated at a clinic at OHSU and she tested very high functioning on the spectrum. While the clinicians were hesitant to say exactly "Asperger's Syndrome", we did hear from speech pathologists and her OT that that is what she would be classified with if she were to be re-evaluated today.

    We work things through day by day. We seem to go through periods of highs and lows. When the lows come (tantrums, perseverative behavior, etc.), we brace ourselves knowing that DD learns through the experiences (as do we). She has blossomed incredibly and is a very sweet child.

    We feel blessed to have not only her in our lives but our DS as well, who is 19 months younger. In every way, he helps her and it's uncanny how instinctive he is about knowing how to draw out neurotypical behaviors in her when she has issues- when therapists, doctors, and we are completely at a loss. He helps her engage in imaginative play, helps her practice "patience" as only a little brother can, and even consoles her and helps her through crowds.

    We feel that we have two kids with unique gifts and very fortunate that they have each other :smile:.
  7. Hi everyone - another thing that would be good for us to do is also post links (if we have them) on ideas, thoughts, etc., that might be of some help.

    Below, check out this link. My husband and I invested in the DVD set but got a bit lazy and didn't watch the whole thing. I believe in this program and I think it's unlike anything that's been done before..
    Please the video that streams and then to the left, you can go the home page that will talk about the program more.
  8. I actually have their books!

    I also highly recommend Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. It's an expanded version of an article she did and has been so valuable to us to give to our parents (the grandparents), friends, and teachers. Her book on activities (1001 Great Ideas for Teaching and Raising Children with ASD) has been a good starting tool for summer activities too (as is Preschool Art by MayAnn Kohl).
  9. HI...My nephew has the same problems..My sister in law is AMAZING and is like an expert on this stuff..She jsut started teaching autistic kids as a result of how much she has learned from having a child with these same issues.If u PM me..Ill send you her email addy..she is a fantastic mom who is always eager to help other moms out in the same situation.I cant give her enough credit.My nephew is now a 15 yr old functioning in a normal classroom...she put so much love nd time into her child.
  10. Great thread, thanks for starting it JChiara. My son is 5 and has Down Syndrome, moderate hearing loss and autistic tendencies (lots of self stim). We haven't had him officially evaluated in regards to the Autism as we're still dealing with his other issues. He's doesn't speak words (but is pretty verbal) and hope that his new hearing aids will improve this. He really loves having his aids in (even tries to put them in himself lol) and in just the few short weeks that he's had them, have noticed an amazing difference in attention, eye-contact and verbalising.
  11. Sigh....frustration. I worked sooooo hard in getting Benjamin to sleep in his own bed....he'd be crawling in for so long, and finally we worked on making up a little 'bed' on the floor if he needed to come in, and finally he was so excited about his little 'chart' that we made....he had to sleep in his bed for 10 days and he really wanted this little electronic game Pixel Chix (it's actually one of his sisters' type games)...and passed with flying colors! Two months have come and gone with no issues - he sleeps like a log in his own bed and I think his little brother appreciates it too because we had to work on him too, but for the past two nights, he's trying to crawl back in.....I put him back.....and this morning I found him sleeping half way under my bed and on some pillow shams......:confused1: I feel like I have to start all over again.....:sad:
  12. jchiara, would your DS be able to verbalize why he has come back to your bed? Up until recently, it would have been difficultt to get our DD to tell us exactly why she does anything, but lately she's been clear as a bell. Or maybe one of his siblings can eek some information out?

    A lot of the times, I have found that some of these "setbacks" are actually due to progress being made in other areas. It's almost like looking for comfort in what was once familiar because there is something new going on. Does that sound like it might be the case?

    (((HUGS))) to you in any case. It's hard when we see progress happening (especially after a slow start), only to see a step back. The good news is that you know your DS can do it - and he does too!
  13. ^^ I very much agree about progress often being marked by "setbacks" in other areas. My son's name is Benjamin, too, and Ben would sometimes seem to lose all the progress we had made in terms of speech. But then I would notice that his self-stim behaviour had improved, or that he'd made a giant cognitive leap (understanding concepts which seemed foreign to him before).

    Additionally, ALL kids experience setbacks in sleeping habits and patterns. I understand how much more effort and time and emotional investment it takes with a child on the spectrum to achieve a gain, though, so I understand your frustration with the setback.

    But like audball said, your DS knows he can do it, and the achievement is not gone.
  14. Actually I DID find out what it was!!! He's incredibly verbal - that's the thing. I think that's what throws people A LOT. But I mean, he's talking constantly....but he's usually about what he wants to talk about. Tonight he was obsessed about figuring out what each food came from which food group. So I just turned it into a game.....
    But back to topic, it turns out that about a week ago, a smoke detector's battery plotzed in the night and was making those weird noises. He came into my bed shaking and TERRIFIED (to put it mildly)....of course, we've since replaced it, but he was so concerned that it was going to go off again tonight. He was just sitting there "is it going to go off?" "is it going to go off?" and I'm like "I changed all the batteries in the whole house so nothing is going to go off" and he was like "okay okay okay....."so I asked if that's why he was coming in at night and he said "yes". So now I know that and I can work with it. The girls are very good with him - they can get frustrated with him when he screams, and his little brother can get a little rough with him...but together they all need each other terribly....
    Hey - do you guys have IEPs in your state? "Individual Education Plans?" I'm so annoyed because our OT person quit after like 3 months so now there's no OT person at school for the kids AGAIN. I've been told there's supposed to be one for September. If not, I have to file a due process complaint since the school district is out of compliance if they aren't providing the services they outlined....
  15. ^Call the superintendant of your school system.Its against the law for them not to follow the IEP.There are many laws in place to protect your child now.make sure you persist.