Please help. I'm terrified.

iVillage Member
Registered: 08-30-2005
Please help. I'm terrified.
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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.

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iVillage Member
Registered: 05-26-2000
Tue, 08-30-2005 - 1:40pm

Hi there! I'm very new to this board and the thought of Aspergers myself, so unfortunately I can't help much with where to start and what to do, but I would like to send you lots of hugs. I'm so sorry for your loss. What a difficult and emotionally stressing time your family has gone through/is going through. Everyone here has been wonderful here, and the support seems wonderful. I'm sure someone will be able to help you with your much needed answers to questions.

Keeping you in my thoughts and prayers,
Heather

Avatar for betz67
iVillage Member
Registered: 03-26-2003
Tue, 08-30-2005 - 2:15pm

((((HUGS)))) what a very very difficult time in your life as well as his! I'm so sorry about the loss of you younger son! It sounds as if the whole family is still dealing with this huge loss. Such a traumatic experience could cause him to regress a bit.

I do think you have reason to be concerned and that having an evaluation for PDD or Autistic spectrum disorders is the way to go. You might want to consider having a therapist help your son through his current situation even if he doesn't fall onto the autism specturm, he has gone through a difficult time losing a brother and having parents grieve as well.

We all go through a very difficult time, an emotional rollercoaster, when we are faced with the possiblity and/or diagnosis of autism in one of our children. It's a rough road, and yours is compounded by other traumatic experiences w/ your children.

Autism isn't all bad. My son is gifted in reasoning skills and mathematics. He read at an early age. He's good at remembering rules and he's very detail oriented. He's sweet and genuine with all people.

(((((HUGS)))))agian!

Betsy

iVillage Member
Registered: 02-24-2004
Tue, 08-30-2005 - 3:48pm

Hi, welcome to the board! First, I want to express how sorry I am for your loss. I have never lost a child, so I can only just imagine your pain.

Autism can be scary at the beginning, I think alot of us have felt this way. My advice is to read as much as you can about the autism spectrum. I have found that there is so much to learn. My son, Nathan 6, was dx'd just last year. I've learned that we just need to do somethings differently. He learns differently, he's a visual learner. He's picky with his food....but that's sensory related. He also likes things "just so"....and we've learned to work around his anxiety and quirky behavior.

It seems awfully overwhelming at times. But I know that all the extra effort that I put into him, pays off. I do see that. He goes to regular kindergarten (with help from an aide), but he does almost everything by himself. I taught him how to do things. It's hard sometimes, takes a little more effort than it did with his older brother. But he does learn...just differently and with more patience.

It's ok to worry, it's ok to cry, and it's ok to question what your doing.....we ALL do this!! This is a great board for support, lots of mom's with great advice!!! It's good to have you here!!

Michelle

Avatar for cathby
iVillage Member
Registered: 05-16-2003
Tue, 08-30-2005 - 4:57pm

Hi,

I am so terribly sorry for the loss of your baby.

I do know exactly what your are going through and feeling with your son. My DS, Jack, is now 4 and PDD-NOS. We didn't figure much out til he was about your DS's age.... I had been pregnant (and I guess out of it) and, well, he seemed OK sometimes. And he did talk. And his eye contact was OK with us. But he did what your DS does when other kids were around. And when I went to put him in pre-school he took off his shoes and ran in circles or sat alone in the book corner. The teacher told me that he was a typical 2-year old...but deep down I knew something was going on. Honestly, I didn't know that you could develop typically up to that age and then have issues develop. I thought we were home free.

Anyway, I would definitely call Early Intervention (which is available free or at no cost in every state). I am guessing that you are in NC? Here is the link to get your started:

http://www.ncei.org/ei/index.html

I know that words can't make you feel better, but as others have said, autism gets less difficult over time. If, in fact, you are dealing with something like this, he's still your sweet little boy who you love with all your soul. You WILL make it through this. I promise you that.

Please let us know how you are doing, and if we can offer any help or just encouragement. Is there anyone else who can drop him @ pre-school for you, to spare you and him the separation anxiety? (Often, kids do better when dropped off by someone other than their primary caregiver.)

Take care of yourself,
Cathy

iVillage Member
Registered: 03-26-2003
Tue, 08-30-2005 - 5:28pm

Hello, welcome and hugs.

First and foremost, I know you didn't say this specifically but I want to say this. If your son has an autism spectrum disorder it didn't happen because of the trauma with your other son. YOu didn't cause it to happen because you weren't there emotionally for him for a couple months. It happened because sometimes it happens. It is mainly genetic and there is nothing you did to cause it and nothing you could have done to stop it. Don't blame yourself.

That being said, kids with autism can regress when under stress. It is very possible you are seeing more symptoms now than you did see before that stressful time but it isn't that his autism is "worse" it is just a person with autism's reaction to stress. And most likely with time, therapy and reduced stress he will do much better.

As for preschool. Nope, I wouldn't force it. In fact I would look into how to reduce stress for you and your son first off. If that means just bringing him back home and enjoying the little things with him again then so be it.

Next, I would get an evaluation through the school district and your insurance if insurance covers it. Find out exactly what your sons needs and strengths are, what is available through your school district and insurance and then start addressing it from there.

Autism doesn't have to be a life sentence though it is life long. It doesn't have to be a horrible thing. The beginning when these guys are first diagnosed and little is teh scariest. I have been there and am on the verge of the other side and it isn't so bad after a number of years. I have 2 aspies ages 9 and 11. My oldest we had concerns about when she was a toddler and finally decided to have her tested at 36 months. I will tell you about the ages 3-4 I thought I would never have a conversation with her. I thought she would never be independent. She is now in middle school and mainstreamed for all academics. She is an awesome kid who still is autistic, but it is just a matter of learning how to work with and support her personality type and quirks. She has made more progress then I ever though possible.

God bless and good luck.

Renee

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iVillage Member
Registered: 08-30-2005
Tue, 08-30-2005 - 8:25pm

Thank you everyone for your kind words of hope and encouragment. Our appointment today went as expected. They referred us to the CDC for a developmental evaluation. Because it can take 3-5 months to get an appointment, we also contacted someone who does evaluations privately. Of course it is an out-of-network provider, but right now we don't care. We have an appointment September 19 for a one hour consultation/observation session. Based on that, he'll arrange various in-depth evaluations. We're on the list at the CDC too...just in case they get a cancellation sooner. I'd also like to see a neurologist right away just to rule out the possibility that he could have a tumor like his brother had (the doctor today didn't think this was likely, but I'd like to get a CT/MRI done just in case.)

Did you guys see a neurologist right away? What exactly did they do? I read somewhere they can rule out other possible problems...but did you see one before or after your over-all evalulation?

The doctor agreed that we should pull him out of preschool because this downward spiral over the past two weeks is likely due to the stress and change in routine. I feel aweful for leaving him in the class crying. He did calm down after about 15 minutes, but knowing what I know now, I feel horrible about it. I am so sad. We had so many hopes and dreams for him...I know he may still be high functioning, but he desearves a normal life. My beautiful boy seemed so perfect just weeks ago. The lump in my throat won't go away, and I can't help but break down every time I see an "autism-like" behavior. I know I have to be strong for him, but I'm a mess. I'm trying to be hopeful, but its just so hard. In six months we went from being on top of the world, feeling so blessed to have two healthy little boys, to hitting what feels like rock bottom. And our future plans are now dashed...I really wanted DS to have a little brother or sister someday.

Thanks for the note about it not being my fault. I am struggling with this. I've been blaming myself non-stop for what happened to our baby (I shouldn't have had the carpet cleaned, I should have eaten organic grapes, I should have skipped the flu shot, etc..) It's hard not to do to same thing here - (was it because they used a suction cup/vacuum during delivery, was it his flu shots, too many Baby Einstein videos too early, etc..)

It does help some to see that you all are so upbeat...I know I won't feel this miserable forever. That's something anyway.

iVillage Member
Registered: 06-25-2003
Tue, 08-30-2005 - 9:35pm

I read your post earlier and I cried. I haven't had the opportunity to reply until now, and Renee said a lot of what I was going to say. Actually, she said it better.

Life has dealt you some serious body-blows this year, and you can only expect to feel somewhat beaten up. Your recent eperiences would probably have crushed or broken a lesser person, but you are facing this next challenge, reaching out for help and making some decisions which would be tough under *any* circumstances. Kudos to you.

Please give yourself some credit for the good things you have done and are doing, it is too easy to beat onself up in difficult times, but the person you need most on your side right now, is you.

Are you getting any councelling or care for yourself? I hope that you are. If there is a local support group to help you to deal with your grief, that would be a good thing for both of you.

As for this next challenge; Autism or what? Well, it is a huge elephant sandwich. The way to eat an elephant sandwich is to cut off manageable chunks, lock the main sandwich in the freezer, and just deal with one chunk at a time. Don't think about the whole sandwich, because it is too enormous and discouraging. Just think about the next chunk. Yes, you may become a bit sick of elephant, (and be sick of it for awhile) but keep tackling those chunks, and one day you will open the freezer and the sandwich will be gone.

To Neurologist or not? I think in your case, it would be a good idea to have the MRI etc done to ease your concerns. (although CT scans and brain MRIs require quite a bit of lying still within noisy machinery. Will your DS handle it?). Personally, I have not had good sucess with neurologists and my kids. -Too quick to jump to conclusions without asking enough questions, in my experience. If you can find a neuropsychologist or a developmental pediatrician, they would be my first choice -JMO.

I have two kids with special needs. I was terrified to face the possibility that my oldest child might be 'impaired'. I beat myself to a pulp about it! Well, he has High functioning Autism, but he is not impaired. He just thinks differently and is a prize goofball. He makes me laugh everyday. And it's not just me. Today I had been to family court with a friend who was seeking a proection order from her husband (Very bad, very heavy scenario and day for both of us). Well, she called while I was making dinner (her husband has been by before the process server could get to him) and I put Peter (7) on the phone. He chatted to her for about 10 minutes about his neopets and vacation and made her laugh for the first time all day. I wouldn't change anything about him.

-Paula

-Paula

visit my blog at www.onesickmother.com
Avatar for cathby
iVillage Member
Registered: 05-16-2003
Tue, 08-30-2005 - 9:54pm

I wish for you what I wished for myself about 1.5 years ago. That the clock speed forward so that the intense pain could subside. I wish I could do that for you.

To answer your question, we have never seen a neuro. My ped. doesn't find them very useful for this stuff, and the dx. are all clinical (by observation) since there is no blood test or anything. And all my buddies who have gone to them haven't ever gotten anything out of it. I know that you'd like to rule out other things, so it might calm your nerves.

I go to a developmental pediatrician, and I also know a lot of people see pediatric neuro psychologists, too. They seem to be the ones most experienced in these issues.

I will close with one of my favorite lines from Les Miz: "Even the darkest night will end and the sun will rise."

Take care,
Cathy

iVillage Member
Registered: 03-26-2003
Wed, 08-31-2005 - 1:21am

Hey there again.

We went to a neuro cause that is what we were referred to. I have recently begun seeing a clinical psychologist here who is stellar. We only keep rare appointments with the neuro because one of my kiddo's has partial seizures. But I have 3 with spectrum diagnosis. Out of the 4 or 5 neuro's we have seen in our lives, I really really loved one at the LADDERS program in Mass. The others range from ok to down right lousy, but then again so have every other field that we have dealt with.

As for what they did, depends. Usually starts with a physical exam and asking you loads of questions. The physical exam will test his coordination adn reflexes. There is alot they can learn about brain function from that. Then if they see anything in the exam or hear anything in your report that causes concern they may order some tests like an EEG, MRI or bloodwork. Many will order tests just as a routine to rule all things out particularly blood tests. They may also order neuropsyche testing if your insurance will cover it.

I think more than a specific kind of practice, it is specific kind of person that is important. One who is vastly knowledgable about ASD's without being demeaning and has a good bedside manner.

Good luck. It was more than 8 years ago when I first really realized something was not right and I still remember the feeling in the pit of my stomach. I remember the day and events like yesterday. Life is so much better now, but I do know where you are coming from.

Renee

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iVillage Member
Registered: 08-30-2005
Sat, 09-03-2005 - 9:28pm

I've been looking at the diagnostic criteria for ASD's, and I have a few questions...what exactly is considered normal imaginary play for a two and a half year old boy? He likes to pick up the telephone and say hello, jabber like he's having a conversation with someone, and then hang it up. The other day we asked him if his stuffed Mickey Mouse doll could talk on the phone and he held it up to Mickey's ear. Does that qualify? He also pretends to be the characters on sesame street - falling down and squeeling when Super Grover crashes into the ground, and he plays out a skit from Sesame Street, pretending to be a baby duck who thinks Telemonster is his mommy. The only example I can find on-line is pretending to feed a doll, which he did several weeks ago, but not recently. I have been trying to introduce having his little people talk to eachother and get on and off his little people bus. He imitates this, but I don't know if that qualifies since he didn't come up with the idea by himself.

Also - how exactly does a typical two and a half year old play with his/her peers? DS usually takes notice - and will watch other kids, sometimes play along side them, and sometimes he prefers to be away from the commotion and will retreat to another room - it just depends. My niece was visiting recently and he loved playing with her - though he is 6, so maybe more like an adult I suppose. ANy thoughts?

And...what is the significance of using his index finger to point at things? Anyone know? I did notice early on that he did not do this, he usually just reached with his whole hand if he wanted to point something out. Recently though, he has been using his index finger a lot.

The past several days have been really hard - I have found myself constantly watching him and making note of every little thing he does. It has been emotionally exhausting, and I've decided that I need to be sure to make note of the positive things, not just the things I think are symptoms.

Thanks everyone for your kind words,
Robin

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