Please help. I'm terrified.

iVillage Member
Registered: 08-30-2005
Please help. I'm terrified.
19
Tue, 08-30-2005 - 11:27am

Hello. Let me start by saying that we don't have a diagnisos, but we are headed to our pediatrician's office today to get started. My son is 30 months old and has been slow to develop speech. I have raised concerns with my doctor several times at well check-ups because he seemed so far behind others in his playgroup. I was told to give it time, then give it more time. He seemed to be making some progress around his second birthday, signing and speaking regularly (just one word at a time) so I stopped worrying. There were never any problems with eye contact, and he smiled all the time, so I never even considered autism. But I had a lingering concern about how he acted around other kids - he seemed overwhelmed by his cousins, and always retreated to another room when around other kids. But - his cousins are pretty rambunxiuos, so I figured he was just the quiet, shy type - not unlike my husband and me.

In April our world came crashing down when we found out that our second baby, due to be born in June, had a large intracranial mass (brain tumor) and would likely be severely handicapped or die shortly after birth. This was all a huge shock, as previous ultrasounds showed normal brain development. Nathan was born on April 25, and he died on April 29. It was a horrible ordeal, as we chose to remove him from life support and held him as we waited for him to leave us. Needless to say, I was a basketcase and it has taken months to recover physically and emotionally (not that you can ever fully recover from losing a child). My poor little boy must have certainly known that our lives were upside down - my husband and I were away from him while in the hospital, people were in and out to help me with him, and I'll admit I was emotionally a wreck and unable to focus on him for at least 2 months. Now it is four months later, and his behaviors, which we dismissed before, are very concerning to us. He's obsessed with fans, the wheels on his cars and tricycle, anything that spins, and he can literally spend hours opening and closing our closet doors (the kind that slide). Sometimes he looks up at the fan, gets in a crawling position, and flips himslef around in circles with his eyes to one side. Other times he just stands and turns in circles, or runs around our kitchen table. I just thought, "oh look, he's pretending to be a fan, or look...he's imitating the kids on the TV who are chasing eachother around a tree." Every time he sees a lamp or a light on the ceiling he reaches for it and says "whiiiiite" (this is how he says light). He does this over and over. He still has many words, but many he has used in the past are lost. He no longer signs. He doesn't look at you when he speaks and often uses words out of context. Just sitting in his highchair today he started saying duck over and over. Much of his speach is impossible to interpret, and it just seems like he is talking to himself. We tried to start preschool last week and it was a disaster - he kicked and screamed and did everything he could to leave his classroom ao he could run up and down the hall. No interest in the other kids. I stayed and watched out of sight and he eventually calmed down and did fine the rest of the day. His favorite activity- running cars or trains around the room. I didn't take him today because his behavior has been so much worse since school started. Should I have taken him anyway? I'm afraid I'll break down when I drop him off - he has such a hard time when we get there. The school thinks it's separation anxiety - but it look s way different from anything else I see when kids cry at drop off time.

My husband and I have been reading about PDD and Autism and we are both just devasted. I can't stop crying. Please help - I need suggestions for what questions to ask, where to start, etc.. I feel like I'm loosing another child.

Pages

iVillage Member
Registered: 03-26-2003
Sat, 09-03-2005 - 11:10pm

Those do sound like some pretty darn good play skills for a toddler, however, it is hard to know without seeing for sure. Plus it can be hard to tell at that age. I can't remember quite everything about your little guy. Talking on the phone and such are very very good signs but at the same time a diagnosis shouldn't be ruled in or out based on one criteria. Also, ASD's are a developmental delay so sometimes they will have good skills early on but as other kids develop then can fall a bit more behind.

My son when he was 2-3 we thought he had good pretend skills. He was constantly pretending to be Steve from Blue's Clues. What we didn't realize was there were 2 differences between his play and that of a typical toddler. First, it was to the point of obsession where nothing else and no other play came in. He would take on the persona of a character and be that character for months and months. Second, there wasn't an imaginative aspect to his play. he was merely re-enacting what he would see over and over. He would insist on watching the video's over and over then re-enact them exactly. It is better now, he is more flexible and imaginative but his play is still limited compared to peers.

Hmmm, from my recollection 2-3 yo's parrallel play usually, some will be beginning cooperative play. Dave (my youngest) continued to parrallel play beyond age 4 which is a bit behind but wasn't concerning to anyone I addressed it with. He is much better at cooperative play now and light years ahead of where his brother was at 5.

A big thing would be is he interested in the other kids? Does he watch them at all? Perhaps interact with them even if they play parrallel. I know from experience a big thing boys like to do starting around then is play chase with each other. But a meeker child who is NT would likely not like that.

Pointing. Well with that the biggest part is the joint attention. Is he trying to show you things with that old "look at that mommy!". Is he getting your attention and trying to show you things? WIth the index finger, well kids by that age aught to have the fine motor skills to point with an individual finger. Kids with ASD can tend to have some poor fine motor skills. Again, my 9 yo AS son I do believe was definitely pointing by 2 1/2 (though I am not positive how often he did it and if it was with joint attention.) He did point late past the 15 month or so part. It was about 2 because I watched for it in video's but it wasn't frequent in those videos and appeared mostly to be to request.

Definitely a good idea to keep track of the positives. It can be so easy to obsess on the negatives and look for the autism in everything.

Hehe, right now I am watching my aspie's pretend they are in a band. Darn they are cute!
Renee

Photobucket
iVillage Member
Registered: 02-24-2004
Sun, 09-04-2005 - 2:07pm

Robin,

I agree, those seem like great play skills! My little guy, he's 6 now, didn't play like that when he was younger. He HAS been doing it this past year though. A bit behind! LOL He likes to pretend he's some character, usually from star wars or something. He whispers under his breathe, and gets in costume with his light saber in hand!! And he doesn't like it when someone else wants to play with him. He seems to have the "scene" in his head, and likes to do it by himself. His odd play skills include lining up his toys (usually when he's stressed), making sure all his action figures have ALL of their gear on APPROPRIATELY, and he also likes to "set up" his toys and then sit there staring at them making humming noises (he does this when he's thinking). Those are just some examples.

When I was little, I was quite shy, so I didn't like playing with other children either. I think it's kinda hard to tell when kids are still so little. I had a hard time figuring that one out with mine. I thought that maybe he was like me. But our appt with the neuropsychologist enlightened me!!! They were able to see things that I didn't see. And being with people that he didn't know, made him act differently. He was comfortable around the family, so his autie traits didn't show as much. His social skills, or lack thereof, were very apparent to the drs. When they decribed how he behaved, I was a bit surprised.

I questioned everything Nathan did too, waiting for that appt. It's so hard to tell for sure. Nathan is high functioning is sooo capable of hiding things, and even acting appropriate when he wants too.

Nathan didn't really try to get my attention when he was younger. The only time was when he "wanted" something.....and that was extremely rare. And even then, he would tantrum, grunt, or stand infront of the fridge. He wouldn't tell me when he was hungry or thirsty. I always had to offer things to him (I had a 2yr old, so I KNEW he had to get hungry!! LOL) I would test him, not offer him anything, and THEN he would "act" like he needed something. I had to work hard on that one!

Good luck on the appt. And keep asking us questions if you have them!! This board is great place to go to when you need advice! I've been here for 1 1/2 yrs now, and I'm still here!!

Michelle

iVillage Member
Registered: 10-03-2004
Sun, 09-04-2005 - 7:28pm

Dear Robin,

Welcome to the board and I want to echo everyone else's deep wishes for comfort and strength for you during this very difficult time. Are you yourself in any treatment or care, have you been checked for postpartum depression? I only ask because you are such an obvious candidate, and not being able to stop crying sure could be a physical symptom as well as a reaction to these devastating events.

I am so glad you are working towards having the testing for your child ASAP. Having a possible PDD evaluated quickly is so key because the younger you get started, the better the results. Your child is still so young, so you are way ahead of the game. That is not to say that children who are evaluated later DON'T do well, there are many here with that story ... but getting started young can so help if your child is on the spectrum.

My son is 8 and dx'ed PDD-NOS, started therapeutic pre-school when he was 3. He is funny, very verbal, super sweet and creative. He did have imaginary play when young, but difficulty interacting with other children. Usually he'd avoid them, or maybe parrellel play in a quiet setting. It was always easier to play with older children one-on-one who would take over the lead more. He also used repetitive language, although very appropriately. You had to hear him over time to know he phrased sentences and questions the same every time. As he got closer to 3 years old, he had more tantrumming and other "autie" behavior, but at 2 it was very hard to tell.

Anyways, the sooner the experts start testing, the sooner you can relax your vigilance of observing every move. There is no way you are going to become expert enough to dx him yourself, so maybe you can find a way to let go a bit and wait for experts? Keep all your stresses low so he can relax and do lots of stuff together you both love. That's going to be the best thing for both of you in the long run, reconnected and laughing and cuddling, whatever the future holds.

I am so very, very sorry for your loss, but you are not losing 2 children here. This child will be able to become more of who he is with help, if there is an autism dx.

yours,

Sara
ilovemalcolm

iVillage Member
Registered: 10-09-2003
Mon, 09-05-2005 - 2:22am

((((((((((((((Robin)))))))))))))))


I'm a little slow in getting to posts lately, so please forgive my belated welcome to the board.

~ Chelsea
iVillage Member
Registered: 03-26-2003
Tue, 09-06-2005 - 4:09pm

Hi Robin,


A belated warm welcome to you to this board.

iVillage Member
Registered: 03-31-2003
Wed, 09-07-2005 - 7:07pm

I am a bit late in responding, but wanted to offer you support. I know how tough it was on my husband and I when I realized that something was wrong with Ian, and I cannot imagine dealing with that on top of the death of a child. I am deeply sorry you lost your child.

It is good that you are getting your son evaluated. There are certainly red flags that you descibed. Austism in truly not the end of the world and there is a lot you can do to help him. We are here if you need anything.

iVillage Member
Registered: 08-30-2005
Wed, 09-07-2005 - 9:04pm
Thank you - all of you- for your supportive responses. This has truly been the most horrific 6 months of my life, and your words were very comforting. We saw the neurologist yesterday, and while he agreed we need to pursue having him evaluated, he actually said he would be surprised if we end up with an autism diagnosis - of couse this was only based on a 30 minute consultation and observing my child in his office. He mentioned that PDD-NOS may in fact be a possibility, but he also cautioned us not to get too hung up on labels. He said that the purpose for getting a diagnosis is really to qualify for services, and it does not mean that our child will have a bad outcome just because he gets labeled. He also suspects that this may be nothing more than an a child experiencing anxiety and a language delay. He ordered an MRI, EEG, and bloodwork to rule out Fragile X seizures, and other disorders. He also got us set up to see a developmental pediatrician. I've arranged to take him to Duke Childrens Hospital for a hearing test. Frequent ear infections may have effected his hearing - at least that's my theory. I feel like I am doing everything I can to get him to all the right people so we can get to the bottom of this. The past 2 days he has been back to his old self,and his speech seems to be coming back now that his ear infection is being treated. What an amazing little boy he is - he always figures out a way to make me laugh even when I feel like the world is coming to an end. I still have a sinking feeling that something is terribly wrong, but he keeps reminding me how smart and interactive he can be.
Thanks again to all of you wonderful moms out there.
iVillage Member
Registered: 09-05-2004
Sun, 09-18-2005 - 12:43am

NC Mommy,

Wow, you've been through so much! I am so sorry for the loss of your other child, but please do not lose hope for this one. I am here to tell you that there is a light at the end of the tunnel. Here is our story...

Cole and Evan, fraternal twin boys were born March 13, 2001 in Cary, NC. (Close to you???) I had 2 children already at that time, Kelseigh, girl, 10-15-92 and Kyle, boy, 11-11-99. As a result of having had older kids, I kind of knew what to expect development wise. So, when I noticed how far behind they were in their speech, I was concerned. Our pediatrician kept telling us, it's OK, they're twins, etc. Finally, at their 18 month check-up the pediatrician did her usual assessments, and at the end of the check up asked me "Do you realize that for the entire time I've been in the room (about 15 minutes) Cole hasn't looked at me once. Even when I was touching him. Have you noticed this before?" I said, no, not really, but his speech, and Evan's was still pretty much non-existent. She promptly referred us to the DEC. (Have you seen them yet? They are the state run agency that may be able to help. They in turn referred us to the CDC, who I think you mentioned you saw). I took them both to the DEC one month later, and my world came crashing down. I was told by the psychologist there that even though they were only 19 months old, she felt that they were BOTH autistic, but that they refuse to make a diagnosis until they turn 3. So, I asked, what could I do with them between now and 3 years old? DEC said that CDC would help. 3 long months later we get an in-home visit from the CDC case coordinator. What it boils down to is this: We can get the boys assessed, we can have a person view them at school to make recommendations and more assessments, we can get on a waiting list to get into a school district preschool when they turn 3. That's it. Can we get speech therapy? No. Occupational Therapy? No. Any kinds of therapies we have to pay for privately, and good luck finding any, because there are huge waiting lists for child SLP's and OT's. So, we jumped thorugh their hoops. Got all the assessments done, tried typical preschool and had the CDC person visit there to make assessments. The boys got kicked out of the typical preschool after only 3 months (they only went 2 mornings a week). Then, my husband got an offer for a new job. Across the country in the Los Angeles, CA area. 3 months after the boys were kicked out of preschool, the month they turned 3 we moved to LA area. (March 2004). At this point, the boys had about 5 words each, and their behavior was atrocious. Screaming, tantrumming, one of the boys was a head-banger. As much as I loved them, our lives were difficult to say the least. That same month they started a special ed. preschool and we started noticing an improvement almost right away. Their behavior was getting better, they were showing more interest in communicating. Then, in June of 2004 they got into a special program at UCLA. The changes in them in the 8 weeks they did the program were nothing short of miraculous. It is now just over one year later and they are very close to typcial little boys. They speak well, with one of the boys being more difficult to understand, but able to communicate. They have eye contact now, they are fairly normally behaved, and no one we tell about their diagnosis now beleives it.

The good thing about Autism is that it is NOT a life sentence. Early intervention is the key.

Going to see a neurologist is a very good idea. As a rule-out person. DO NOT believe them if they try to diagnose your son. Neurologists are NOT qualified to give an Autism diagnosis. The only person who should be diagnosing your son is a psychologist or psychiatrist who has EXPERIENCE with Autism. Autism has so many gray areas, that even a good Dr. who doesn't have a lot of experience with it can mis-diagnose.

There are a few things you can do on your own in the mean time. Try the GFCF diet. (Look it up on the web). Look at the different therapies that are available for Autism. The TEACCH method is very popular in the Raleigh-Durham area. ABA is also very popular. Try to not lose hope, and be sure to keep in touch.

Big Hugs,
Kathy W

iVillage Member
Registered: 08-30-2005
Sun, 09-18-2005 - 4:41pm
Thanks for your reply and for sharing your story. It sounds like your boys are doing really well - I'm glad to know there is hope and happiness after a diagnosis. We live about 20 minutes from Cary. I sure hope we have better luck getting therapies started than you did! We have not been to the DEC - I'm not sure how they are different from the CDSA? We are seeing someone privately tomorrow as well - it's a guy who used to work with TEACCH and has a good reputation. We are also going to have him evaluated at TEACCH and the CDSA (we can't get him into either until November), and I've scheduled a hearing test for him at Duke Children's. The nuerologist scheduled an EEG, MRI, and some bloodwork. He talked about anxiety sometimes looking a little like autism, and said that our son seemed too interactive to be autistic, but he admited that he cannot be sure. I'm taking that with a grain of salt after what I've learned here. I'm still praying that we are wrong, and that our son just has a speech delay coupled with the terrible two's. I just can't give up on that yet. He's all we have now and I just have to believe he will have a normal life. Denial is all that is keeping me together right now. I'll check into the GFCF diet - thanks.

Pages