Newly diagnosed autism

[Suzi]

Hello all, about 9 months ago, I had thought that Benji might be autistic. They weren't too quick to diagnose him because they thought it could be a regression/depression from the divorce and all the changes but he has now been diagnosed by our doc and the early childhood staff. We see the pedi neurologist at the end of the month. He is now 26 months old.

I just wanted to see what other moms are dealing with this and what you have learned.

He is very loving and his social skills have improved, he tolerates other kids getting in his space just fine. He just doesn't talk, point, sign, or do anything to communicate other than scream or put my hand on him when he wants tickled. He is starting to make more noises and sings all day long.

[missdawn25]

:hugs: Hi mama,

I just wanted to offer a hug and any help I can. I teach, well did teach, preschoolers with Autism (I'm a SAHM now to my almost 3 month old.) You should get him into theragy ASAP. I work in an ABA program and have seen huge growth in many children. There are also great programs to teach communication and increase social skills. PM me if you want som more help.

Dawn

[me-n-my7dwarfs]

My son Brodie was diagnosed with Autism April 22nd this year, he was 20 mths at the time. It's hard, it sucks, you grieve and then.........you learn to deal and love him even more than you ever thought possible.

We started EI right away, and in the beginning didn't do much for him but now we're seeing some progress with his social skills and not melting down as much when we change the routine. He still doesn't speak and tomorrow is our first of "speech therapy" so we'll see how that goes. So far, insurance pays for nothing and we haven't found a whole lot of help, but we're not giving up.

Have you started any sort of therapy yet??
We're currently looking into biomedical treatments.........who knows?

Good luck, you're not alone.

[LisaEileen]

Victoria hasn't been diagnosed...yet. I was induced when she was 34 weeks due to really high blood pressure. She was 5# and perfectly healthy. She never went to NICU. She was perfectly fine until 16 months. She developed a cold. No biggie. But, it was going on day 10 so I thought I'd bring her to the doctor that morning after crossing guard duty. I made any appointment for 9:30. I got home at 8:15 and thought it was weird that she wasn't awake yet. I went in her room and she was barely responsive. To make a long story short, she went to Children's Hospital in an ambulance and after 3 days all they could do was tell me she was a bit dehydrated from having a cold and they couldnt' find anything else wrong with her.

The first night we were at the hospital she started headbanging. She never did it before. Since that time, she spent every single night for hours on end banging her head, rocking and humming to herself. I was up for hours trying to prevent her from hurting herself. I begged the doctors to let me try a medication to help her sleep because we noticed that when she had a rare night of sleeping through, she acted nearly normal. But, otherwise she spent the day tantruming and headbanging. We finally got the doctor to give her Risperdal and it worked like a charm. It's very rare that she doesn't sleep through the night now. BUT, her daytime issues haven't went away completely. She is talking a bit more and she will ask for something she wants on occasion. The tantrums have lessened a lot too. But, she still does a lot of rocking, headbanging and humming. She definately doesn't have the normal development of an almost 3 year old. She will be 3 August 13th.

I worked with special needs people all my life. I have a brother with Aspberger's. Not to brag, but I thought I was really good at my job. I only quit because it was too hard trying to work full time and raise my girls. But, having a dd who has special needs is so different than working with a little one with special needs. My heart breaks somedays and I'm having a really hard time convincing myself to get her evaluated. She has been working with Early Intervention for about a year now. It hasn't really helped. They only come once or twice a month. What I do with her is way more effective. They are trying to convince me to put her in a special needs preschool, but that is completely against what I believe since we are homeschoolers. They will be sending a teacher to my home once or twice a week during the school year starting in Sept.

My brother is 33 and has a really good job, drives a car and can take care of himself just fine. I have to keep looking at his life and convince myself that everything will be OK for Victoria.

I'm not sure if I encouraged you at all. I probably just depressed you. If so, I'm sorry. I actually need some encouragement today myself. I had a really hard night last night. It all kind of hit me when I was watching Victoria laying on the floor, rolled up in a blanket, rocking and humming. We were with some other people who have kids the same age and they were running around playing, talking and having fun. Victoria is pretty social most of the time and she loves getting lots of hugs. But, she goes through those streaks where all she does is climb under a blanket, rock, hum and headbang. I guess my bubble was kind of burst last night after seeing Victoria compared to other kids and knowing there is no convincing myself that she's "normal."

[SarahJane]

Hugs Mamas. To give you some hope. My sister's daughter was extreme. She didn't have any language until she was 4.5. My sister got help right away. She took her "Kate" to a Speach Therapist and worked with her daily at 32 months. Today, Kate is in college! She is bright, happy, articulate and has many close friends. It was a long hard road, but my sister's determination and commitment made all the difference. The Chesapeke Foundation, I think it is may be able to help find resources. Keep asking question and believe in your child. You are his/her greatest allie.

:hugs: :hugs: :hugs:

[iris0110]

Kearnan wasn't formally diagnosed until his third birthday, but he began recieving therapy at 2yrs. He'll be 7 in under a month now. Every case of autism is so different and so is every child with autism. Kearnan is a special case because his autism was caused by brain damage from his MMR vaccine. So the things we've done to treat him wouldn't necessarily work for your son or your family. Speech therapy never did a thing for Kearnan. He did or didn't develop based on his own scheduel and other forces, but not the therapy. However his first speech therapist taught him to sign and that was quite helpful. Kearnan also has SPD so we've done alot of therapy with that as well. Occupational therapy and feeding therapy both for his oral deffensiveness and to get him past the idea that food causes pain (we finally healed most of the mess in his gut so it shouldn't hurt him to eat anymore). The biggest help for him was his DAN! Dr. Today you wouldn't really know he was on the spectrum unless some one told you. He isn't quite like other kids, but he isn't as different as he used to be. Some days I am still worried about him, but more and more I believe he will have a relatively normal life.

I know I grieved alot with the diagnosis process and eventual diagnosis. For a long time I didn't really believe it. I knew something was wrong, but I didn't see autism really. The SPD was easier to see, but it has actually been harder to deal with. We've done alot of unconventional therapy, and alot of it has helped. Horse back riding has been really wonderful, he will take part in a riding fundraiser event in the fall that he is really excited about (and it is a big achievement that he was chosen). It's just a matter of figuring out what works for your child and doing it, wether that is what everyone else says to do or not.

[LisaEileen]

Shannon, can I ask you how you know for sure that your sons issues were caused by his MMR vaccine? I have my suspicions about this with my dd too. Sorry, don't mean to hijack.

[iris0110]

Shannon, can I ask you how you know for sure that your sons issues were caused by his MMR vaccine? I have my suspicions about this with my dd too. Sorry, don't mean to hijack.

Kearnan developed normally until 18months. He was actually quite advanced verbally at 18months, he had a vocab of over 500 words, all recognizable not just by family but by almost everyone. He spoke in short sentences and just sounded like a tiny 5yr old. He was very social, he would bat his eyes and smile and flirt, just a really happy kid. He had his MMR vaccine at his 18month visit and within a week things started changing. He lost his speech, he started tantruming all of the time. He quit sleeping, quit smiling, quit making eye contact. It's not like he never did these things, he did them, and then he didn't. He started this horrible screaming, he would lie on the floor with his hands over his ears and just scream. It would start low and then rise up to this horrible ear splitting banshee type wail, sounds you wouldn't think a human could make. Then it would drop back down and he would keen for a while, then it would fall off to noises like a sick nb kitten till he finally got quite. He did this just all of the time. His eyes got really sunken and he got dark circles around them. He stopped eating, started having intestinal problems. He would have diarhea (I know TMI) for a week at a stretch, then it would stop and he would have no bm's at all for a week or more, then the diarhea would start again. He never did a whole lot of stimming (didn't toe walker or hand flap or spin things or anything) but he would hold his ears or his stomach alot and the keening and screaming.

Finally when he was two we got refered to a pedi neuro. I thought it was funny that when we explained to him how Kearnan had been and then how he had changed the first thing he asked was "when was his MMR vaccine?" He said he saw this alot. We did a series of tests, MRI, ABR, EEG and pretty much every blood or urine panel you can do on a person. Everything came back normal except his MRI. It showed pretty obvious encephalitic braindamage from around the same time as his MMR (about 6 months prior at that time). The pedi neuro told us that he was almost certain the MMR caused the encephalitis, by this time AAP was already doing a study on MMR and encephalitis. He is the head of pediatric neurology at one of the top children's hospitals in the area, so I trust his assessment.

Eventually the swelling from the encephalitis went away and the screaming stopped slowly with it. Usually a child's brain if not too baddly damaged will heal itself and make new connections but Kearnan continued to have alot of problems. He also continued to have stomach problems. We finally got him to a DAN! Dr when he was 5 and he ordered some tests for us, and sent us to a pedi gastro for more testing. At that point we found out that Kearnan had no healthy intestinal flora to help him break down his food. In stead he had one nasty bacterial culture usually only seen in hospitals, fungal overgrowth and an active measels colony. We treated the bacteria and fungus (we are still battling fungus unfortunately) and we have the measels in a kind of dormant cycle. We also have been supporting him with healthy probiotics. His whole body was starving because he ate very little (because it hurt to eat) and he couldn't really process the food to nourish his body or brain. That is why his brain wasn't healing. With supplements, treatment of the inflamations, and therapy his gut is mostly healed and he is eating again. He's gaining weight and recovering quite well. All of his therapists are really impressed with his progress. He still doesn't totally trust foods though, he is very afraid that a new food will make him sick so he sticks to just a few things. He's in therapy for that too. And from time to time the measels still flares up and he gets a bit sick and that sets him back again. But overall we are doing really well. Most people don't know there is anything up with him when they meet him. And he is doing much better socially. He's pretty much caught up speech wise, he's under 6 months behind which puts him in the normal range.

OP sorry about the hijack.

[thecowgirl]

i found this thread from a link posted in another thread i started about autism and vax. i am curious if any of you mamas had the rhogam shot during pregnancy? (the one you get when you're rh negative blood). i recently read about connection between that and ASD. i had the rhogam, and the possibility now terrifies me!!

[sweetangelfriend]

My ds is going to be 4 in August and we've been seeing some autistic tendencies in him. We've been seeing some things for a while, but just couldn't put our finger on it. He had been getting EI until the therapists just wouldn't work with him and wasn't showing up for his appointments. I decided that I was going to work with him myself. He's made lots of progress, but I still see that something isn't right. I'm taking him to a special needs pediatrician (specializes in special needs kids) here very soon. I've already got his papers filled out and they just need to get his file from his doc. He still has quite a few issues, but I'm working with him constantly. I'm definitely not going to give up on him like some people think I should. Some people think that spanking will straighten him up, but I know there's lots more to it than that. He's my son and I love him with all my heart! I'm not about to give up on him! He's very smart and can do some things with computers that some adults can't figure out! He also loves music and bugs. I'm homeschooling him and am going to try to relate his schooling to the subjects that he loves most. I'm trying to keep a positive attitude with him even on the bad days. He's a good kid and I know it. He just has a few issues that make things harder for him to understand the world around him. That's where I come in!

[Suzi]

Mary-My heart goes out to you and your son!

[sweetangelfriend]

Thanks, Suzi!! It hasn't been easy cause we've been dealing with this since spring trying to get him help. My dd was born at 33 weeks in May so that kinda put things on hold for a bit. We finally got a pediatrician I hope will get him the help he needs.

[Texasmom]

my four year old is autistic and I also have an almost 10 year old with aspergers can I recommend a book that really helped me its called changing the course of autism hugs to you