Please Forgive Me

for the little rant I'm about to indulge in.....
I am losing it.  I am having a fit and I'm so scared I can't hang on here.
My dd is 21 months old.  We took her to a speech pathologist a month or so ago, because she hadn't started talking yet.  The woman stuck her in a too-small highchair for an hour, (dd is very active) and then told us that she is "severaly delayed" and that we should have a neurological eval done.  We of course were freaked.  Then dd started saying a few words, really improving and we felt pretty good.  Her pediatrician thought this was great but said why don't we go to the neurologist anyway, since it's been brought up we will probably feel better if we have it checked out.  Fine.  We also have an appt Tuesday to get her speech evaluated again at this free state program since our insurance won't pay for speech therapy.
So we went to the neuro yesterday.  He had NO answers for us.  He said she might be autistic but maybe not.  He wants her blood tested for fragile x syndrome (basically retardation).  He said her eye contact is "marginal" because she didn't make eye contact with him, but he also seemed to think it was a problem that she wasn't scared of him.  (It was a small room, and we were right there, what was she supposed to be scared of anyway?)  (PS she makes eye contact with people she knows, all the time.)
Then he said it was great that we were going to the CDTC (free place) because they would do a full eval on her and maybe they could help us.  Thanks Dr. Pass-the-Buck.  You're a f***ing neurologist, why don't you have some answers for us?  He seemed to think there was no point in his doing any tests because they were going to see her, so it was a total waste of time for us to go, other than scaring the living daylights out of us.
I am a pretty strong person, I am usually able to handle pretty much anything and I'm optomistic about everything, I always think it's all going to work out but I have to be honest here, I cannot handle this....I don't think I could deal with having an autistic child, or a child who could never live on her own or take care of herself, I don't know why this is happening to me or to her or to any of us.  
You have a child, and that child embodies every hope and dream you ever had, and especially when it's a girl, you think about her school dances and her wedding day and stuff and what am I going to do, that may never happen, and I just can't figure out what I did that was so wrong that this is happening to us......
Im sorry to be going on like this, I just don't know what to do, and I know there is still hope and nobody has turned around and TOLD us that's what's wrong with her but everybody seems pretty d*** sure there IS something wrong, and I've never been so scared in my life.....
Anyway, I was hoping that maybe some of you will have been through something like this or know someone who has been, I know this isn't really a UKY parenting issue but I needed to get this all out.
Also I know I owe some people messages, and wanted them to know what's happening so they don't think I'm ignoring them, and everyone else so you don't think I've disappeared...

Thanks
S

I don't have any answers... I'm not a parent yet, I don't understand... But I still wanted to give you a HUG.... so here you go, you sweet doll...
HUG

SAF,

You sound exactally and I do mean exactally like I did in the fall of 2001.  I have been through all the tests.  I have been through all the doctors.  I have been through all the emotions...it is an incredible rollercoaster.  I am waiting at the moment for our fragile X-results!  So believe be I know what you are going through and I am leaving to move my family to the UK in two weeks.  I would be happy to go into detail about my experiences and the issues we are facing with our son on this forum or you are welcome to email me.

Information is your bestfriend from hear on out but most of all and I stress this STRONGLY...go with your gut.  To this day it has not failed me.  It has taken until just recently for an "answer" and it ended up being basically the gut theory/idea whatever you want to call it I have had all along.  Just remember that no matter how many labels someone tries to put on your child they are still your child and nothing will change your love...just love them for who they are not who they won't be...it took me a long time to come to that realization.

Take care,

Kathy

SAF, hang in there and know that we are all pulling for you guys, and I am saying a prayer too.  I know this must be a very scary time for you and your family.  

Stephanie

Obviously, this is the perfect place to let out some steam, so don't ever worry about that!

Doctors are an incredible bunch. My mother has been trying to get answers for the past 9 years for a variety of issues and in that time I've heard a range of wild stories. The one common thread is that they love to pass the buck and if what you think is going on doesn't fall in line with their particular field of expertise they won't bother to investigate. Be strong with them, be a pushy American, lie if you have to. My mother would educate herself on the subject then flat out lie that she had certain symptoms simply because they wouldn't carry out the tests otherwise. There was certainly method in her madness as this resulted in several breakthroughs.

It should not be this difficult and it is so very draining when it's happening directly to you - let alone a child. Of course we have no real answers to offer, but we have loads of empathy, and positive thoughts that we will send your way.

On a side note I will say that my sister did not speak a word until she was three years old. Now I mean nothing, hardly even a gurgle. Then one day my mother was cleaning the windows while standing on a chair. As she cleaned she threw the dirty paper towels onto the floor. My sister picked one of these up, looked at my mother and said "Bounty! The quicker picker upper!" My mother nearly fell off her chair. Those were her first words. She had no learning problems and is a far brighter cookie than I.

Hang in there, and please vent anytime you need to  

Staci, I'm sorry I didn't see this thread earlier. I have a 3-3/4 year old son and a 2-1/4 year old daughter with speech delays.

When my son had his 2 year evaluation, as is common place here, the health visitor expressed concern about his little speech progress. He had a vocabulary of about 5 or less words. 6 months later, no progress, and she put us on the list for speech therapy, waiting list was 6 months. I was more concerned at this point, and started researching why he might not be speaking yet. I hit the search engines and found myself researching autism within an hour, and the more I learned about it, the more I found explanations for all of his other strange behaviors. I phoned the health visitor and told her my worries, she came around within a few days, we discussed it, and she set up a priority appointment with the CDC (child development centre) within a short time. They did a basic evaluation, and put him immediately into speech therapy, both one on one, and small group. One year later, I have a little chatterbox. Tho the court's still out on the autism issue, they said he's too young to tell at this point, and if so, I believe it to be high functioning in the spectrum. He'll be due for another evaluation soon, and he's starting nursery school in the Fall.

The two year old, she's not saying much yet, but she's starting to make a bit more of an effort now. Maybe because her brother is talking now, who knows. The health visitor will be back again soon to see if she should recommend for speech therapy.

I know how you feel, and I just want to say that I've gotten great care from the NHS in this department, the CDC has been fantastic.

((((((hugs)))))

My thoughts are with you, feel free to vent anytime.

Thanks so much to everyone who replied, it means so much to me and makes me feel so much better.  I meant to come on Monday, but we have had unbelievable thunderstorms here all weekend and half the time our power has been out, so I didn't want to get involved in a post and have it blip out.

Yesterday we went to the CDTC, which is a state-run program for children under 3, it provides free therapy etc.  They did a complete psychological and speech eval on Dagmar (that's my dd's name.)

They do NOT think she is autistic!!

They were actually a little surprised that the neurologist would have thought that was the case.  Like your son, Leah, they can't rule it out fully because she is still too young, but they are confident that with some therapy, in a few months she will "blossom."  The psychologist did not get eye contact from her either, but since the speech therapist did, she was willing to believe (A) that we were right in saying Dagmar doesn't interact as much when tired, and (B) given her functioning in other areas, she felt this was more a socialization issue than anything organically wrong.  So once a week I will take Dagmar to a speech therapist, and once a week a developemental therapist will come to our house to work with her on stuff like learning to use a spoon, puzzles, etc.  

I explained to the psychologist that I don't know what to do with her, I mean, I don't know what games to play and stuff that will encourage her to develop.  She really felt that that would explain Dd's delays and was sooo nice about it, said that's what therapy is for, to teach me how to help my child.  They were very confident that we have a sweet, bright little girl who just needs some help learning how to socialize.  They also said it was clear to them that she has a very good attatchment with us, she is very affectionate, and were again shocked that the neurologist seemed to think that if we left the room she wouldn't care.

So we are still waiting for the fragile x results, and still apprehensive about that, but given how positive the therapists and social workers all felt, we are so much happier.

I will keep everyone updated, especially on the fragile x thing and how the therapy is going, I never dreamed when I posted my little rant that there were so many here dealing with the same issues!  (Incidentally, Biggest apple, I did the same thing with my speech..nothing until age 2, then full sentences!  Also, after all this I appreciate your comments about doctors even more..I think the neurologist was looking for autism, and finding things he could fit into that.)

So thanks everyone, for all the prayers and thoughts, (I'm going to have to volunteer with children now when we get to England, as I promised God I would if dd was not autistic) (my bfs in England promised their little girl a pony if she made it through a surgery she had a year ago, so they're in worse trouble than me!!) and again, I can't tell you how much better it made me feel to read these posts.

(I'm also very much looking forward to England, where it seems they aren't as pushy with when kids should talk...they expected dd to be able to point to named body parts at 18 months, which is considered quite early there, I think.)

Leah, what little mannerisms did your son exhibit?  Have they changed?

SAF,

Don't know how I missed your post earlier, but just wanted to say I'll keep my fingers crossed, my toes crossed...well anything I can...

but most importantly I'll keep you in my prayers.  

Just one little nugget from me... it is perfectly normal for children to develop language aquisition and indeed social skills later or earlier.

If you need any info. on anything education wise let me know. Though I do mostly older kids....I can hunt stuff down.

Hugs all around.
I don't really visit the parenting board much at all...brings to my mind that I'm missing my own son so much and not that I am bothered by your own words...just that you won't shut me up talking about him.  

I wanted to pick up on something that Leah mentioned. Her Internet research. There is SO much information out there. You have a specific need, a specific question. The health officials see all sorts and can't know everything, and don't have the personal information you have, for instance, the eye contact. I can't stress how important it is to be forearmed with this stuff. Learn everything you can, and approach the health people with this knowledge. You might even teach them something. At any rate, if you do sit down in front of the computer and research it, you can feel you are actually doing something, rather than waiting for the next appointment.

I think "autism" might be one of those buzz words that "ADD" was a few years back. I believe we all have a bit of that. Some more than others, but I wonder if it is one of those things that tends to be overprescribed if there isn't a specific "eureka!".

SAF,

I just saw this myself or would've posted sooner.  My son was also speech delayed.  When he was two, I became concerned as well and talked to his pediatrican who really had no idea what to do.  I then took him to a speech pathologist who said she thought he had an unusually big head (he did not, just had a lot of hair that I kept in a dutchboy style) and so she thought there was something seriously wrong with him or at the very least, he was slightly stupid.  I finally took him to our school district and had a speech therapist evaluate him.  She said that quite often little boys are speech delayed, they generally advance physically first (crawling, walking) and then develop verbal skills later.  He did walk earlier then my daughter (who's 2.5 years older) and was more physical.  The speech therapist recommended him to the early childhood program in our local school system which was really just a more intensive pre-school type setting with a small class size (8 kids - the majority were boys).  He was 2.5 years old by this time.  He did wonderfully and started talking fairly soon after the class started but was still close to three years old by then.  We kept him in the class for two years.  He started regular kindergarten right on time and did just fine after that.  He was very social (when he graduated high school he was voted "wittiest"!) and did fine in school.  He's 19 now and in the navy...doing just fine!

Big hugs to you...I know how frightening this is.  Please let us know how it's going and vent, vent, vent when you need to!

-Sandy

Hi SAF
You've already gotten some really good advise so I'll  just send good thoughts your way.  There is a really good book that I can reccommend-'When you worry about the child you love'  by Edward Hallowell.  It goes over different syndromes/diagnosis, explains what they are, has descriptions of behaviors and sympton checklists.  I agree that the best thing you can do is arm yourself with information.  Good luck

Just a little update-

Dagmar has now had several visits from the "Play lady" as we've been calling her Developemental Therapist, and is really doing well.  She's giving the lady more eye contact, which is great, and starting to say a few more words, too-her vocabulary is really starting to build, but she is still reluctant to talk.  She loves the play lady's visits, and although it's sad, I have to admit being pleased when the play lady leaves and Dagmar starts saying her tearful "Bye"s and waving bye too!  Like, "By George, she's got it!"

Had a talk with the play lady about autism..she did say that Dagmar has a few autistic "mannerisms" but that she doesn't really behave like the other autistic kids she deals with...Dagmar is interactive and friendly, she doesn't "spin" toys or get scared or try to take the toys away, so that's a good sign.  Also, we got her a baby doll that she tries to feed and kisses, so that's an excellent sign.

Had our first speech therapy appt. last week, we didn't like the speech therapist as much as the play lady but she did warm up after a bit, so that's good too.

So although I still have my awful down moments, on the whole I'm feeling better, and I'll keep updating regularly.

Again, thanks everyone..I was just rereading all the posts and they're so helpful.

Sorry it's taken me so long to respond. Not having kids, I tend to avoid the parenting forum, but I'd just like to add this:

Einstein didn't talk till after he was 3 years old.

Hugs to you SAF and everyone else who's had to deal with something like this.

-Lisa-

I'm happy to hear that things are progressing along for your daughter.  You just watch, in no time you'll have a little chatterbox.  

And PS, the Fragil x results were negative, so we don't have to worry about that!