Michaels trip to the pediatric neurologist.

[elaineandmichaelsmommy]

I wasn't sure if I wanted to post about this. I've been pretty emotional about the whole thing and have also felt like being private about it.

Last week his speech therapist came to observe him at school. We've been working with her for about a year, give or take a month or two. His speech delays have never been an easy thing to deal with and progress has been hard won. He started attending montessori school at the beginning of this month and we've seen progress in his speech that we'd thought was months away occur. For instance-2 nights ago ds finally looked at me and said " I love you". I was so excited I called my folks to share the good news. He's never said it before in his life.

So back to the observation at school. After she saw him at school and spent an hour with him she came to see me in the lobby. As we sat and talked she opened up and told me that she was afraid that she was seeing some red flags in mike that signaled the possibility of autism. She immediatly said she wasn't a neurologist or doctor of any kind but that she sees a LOT of children and mike was causing her concern.

I was furious. Not my son. He's fine. Noone's suggested this but you. I thought. So after discussing the situation with dh ( who was just as convinced as I that everything was fine). We agreed to call the ped. and get a referral to a ped. neurologist just so we could prove her and anyone else wrong. And today was that appt. Not bad considering that my meeting with the therapist was friday.

So after his exam the neurologist concluded the following. That mike definatly has a speech delay that needs more therapy than once a month. And that he's right on the edge between just a delay and very very mild PDD. He even admitted that ds was "a tough nut to crack" and not an easy diagnosis. But also that had he seen him 6 months to a year ago he would probobly have said that he was autistic. The good news is that he thinks since it's manifested itself in his speech alone and not socially or sensory that with time,growth and therapy that he'll simply outgrow it and that he's most likely already started to outgrow it which is why we're seeing the speech improvement. And that he'll be fine and in mainstream school by the time he's in first grade. And that aside from the speech delay he is a normal,healthy child.

The other good news is that ds apparently has a boy in his class with the same situation so his teacher is very familiar with it and what ds will need and what he'll need from her as far as attention, etc. goes.

I really wanted the therapist to be wrong. So badly. But at the same time this all makes sense. The way he stopped talking. Like someone hit an off button on him. And then when he started talking again it was nothing like before and there was very slow learning a progress. Everything was classic for the PDD. It's reassuring to know that the therapy has been working, that he'll be all right. I'm also happy that now it has a name, a cause, and it's not just ds being "difficult" "excentric" "different". That he's not being stubborn.

I can only imagine what his world must be like. To struggle to speak the way he does. To have to work so hard to put words together.To even say that you're dinner is yummy.

I told dh after the kids were in bed that I really didn't need this "pandora's box" being opened on me 6 days before having a baby. But then again when would it have been a good time? I'm a little mad that the sweet pre-baby time seems to have been taken from us but I will have 4 beautiful days with her in the hospital before I have to dive into the waters again.

Tomorrow I'll be calling our therapist to see what needs to be done to get someone out to his preschool through the school district. It might be tricky considering that mike goes to a preschool 25 miles away from the district he lives in. Maybe we'll be able to get someone fro the school district the mont. school is in to come. I'm not familiar with state reg's. with this so it'll be interesting to see what happens. It would be nice if I could get everything in place for ds before I go to the hospital but I only have 3 working days to get it done. We'll see how fast everyone can move.

So that's it for now. Thanks for reading if you've gotten to the end. We'll see what happens tomorrow.

[niccig]

As difficult as this was for you, you just did the best thing for Michael. He's going to get the extra therapy and support that he needs and he's going to progress and improve. It could be difficult to get things set up, and you'll be dealing with a newborn too, but you'll get it done for him.

[citymama]

It sounds like after a rough period, you have found a good therapist - who feels like M's speech issues can be worked on, improved and hopefully, resolved. I can only imagine how imperfect the timing is, but on the other hand, you now have a plan moving forward and aren't getting this info in the wake of post-partum hormones and sleep deprivation. Sorry you are dealing with so much at the same time.

All the best to you and your family with M. and of course the new baby!

[maestramommy]

:hug: I'm glad Michael will be getting the help he needs. As for you, take your babymoon anyway. You need to enjoy that time and Michael will not be going anywhere.

[elephantmeg]

huge, huge, huge hugs. I would have wanted them to be wrong to. I'm glad the prognosis is good!

[pinkmomagain]

I just wanted to give you a big hug. I went through similar things when dd2 was 3. She did not have the same speech issues (she had pragmatic language issues) and a whole slew of dev delays. When her nursery school teacher approached me about her issues, it was like a sock in the stomach. Years ago, they wouldn't dx at that age...but PDD was one of several dx bandied about. (The psych who was helping her with social skills was pretty sure that was the dx.) It is very hard to wrap your head around everything. I remember also wanting to be very private about things. It is a really tough time to go through. As she got older she changed alot (and had alot of therapy) and her dx now at age 9 is ADHD-Inattentive type/anxiety. I'm kinda rambling, and I have to rush out and take said dd to the bustop, but I just wanted to say that I btdt and can really sympathize with your emotions right now. It's just something you need to process and go through....but it sounds like Michael's situation is not too severe and is already making great progress. It sounds like you are really on top of things and getting him the help he needs. I'm sure he is going to continue to surprise and please you with all of his strides and accomplishments.

[JTsMom]

:hug: Yeah, that's some timing. :hug:

When we first started figuring out what was going on with DS (so far SPD and a speech delay), it was really emotionally draining at times. Someone here told me to try to remember that a label doesn't change who he is- he wasn't suddenly someone else- he was still DS. The big difference was that now we could start helping him. That really helped me, so I wanted to pass it along.

It really does sound like the prognosis is excellent, and I'm betting with the extra therapy, life will get easier for all of you- I know it has for us.

[KBecks]

Ooohhh, I'm so sorry to hear how stressful it has been for you. We totally just went through the whole "that's nuts!" reaction when Alek's teacher suggested he has a motor delay (and he does, and now we're working on it and I'm ultimately thankful.)

I'm so happy for you though about the good news, and that is good news that he will get through this. I am so happy to hear about his great progress too! That is wonderful. I hope you get many more positive moments that you can hold on to for encouragement. :)

And, enjoy the new baby! I think it's tough not to let a diagnosis bring you down, but then again, you've got a great kid who will be wonderful no matter what happens. I will be thinking of you for the new baby's birth! It's so exciting, and it's another huge positive for you to enjoy.

[caleymama]

:hug: to you. I commend you for reaching out for help for Michael.

Best of luck as you prepare for your new DD's arrival. Enjoy your special time with her. :heartbeat:

[mytwosons]

:hug5: There's never a good time to get news like this, but right before your new baby arrives completely sucks.

I've BTDT, and think you do need to go through a grieving process. If you don't get a chance to grieve before the baby arrives, just be aware that it might sneak up on you at a later time.

I'm a firm believer that many times, children can recover from autism. There is hope, and it sounds like Michael might just have a mild case and will be absolutely fine.

I think the school district will be willing to travel to the mont. to observe. We were in the same situation and that's what happened. The district where the mont. is located won't have anything to do with it, since you are not a resident of their district. To be blunt, they aren't going to spend a dime since you aren't in their district. Your district will make the trip because it will give them a good idea of where your son is at. I don't think this will be an issue at all.

Really, in most cases, ST is the first step after receiving a PDD diagnosis. Since you are already doing that, I would contact the school district and get the ball rolling since it's a long, slow process. Then, after that phone call, just concentrate on the new baby and give yourself permission to feel anything you do.

I should also mention that there is a BBB-Specialneeds yahoo group for anyone who wants advice, to vent, support, etc.

[KpbS]

:hug: to you. It is hard to digest but better to know and treat. Try not to stress now and enjoy his new accomplishments.

[ThreeofUs]

:hug:

It's a hard thing for a parent to hear, even sort of after the fact. But I'm really glad to read that he's making good progress. May every good thing come to him.

As for your pre-baby-moon, I'm sorry you're hearing it just now - 4 days before birth would be a time when I couldn't hear "bless you" without feeling bad, so I can't imagine how you're feeling!

Best of luck to you in the coming days, for the birth and baby moon, and with the new baby as part of your family.

I'm sure you'll kick back in helping your DS soon after you give birth, and I'm sure you'll do it well and help him immensely - but for now, I wish you peace and joy.

[mommy111]

:hug:
Remember, a diagnosis doesn't really mean anything, it doesn't define him, he is still the kid that he always was, this just means that you will be able to get help to get him to meet his full potential. Good for you that you reached out and got him the help that he needs

[brittone2]

:hug:
Remember, a diagnosis doesn't really mean anything, it doesn't define him, he is still the kid that he always was, this just means that you will be able to get help to get him to meet his full potential. Good for you that you reached out and got him the help that he needs

:yeahthat:
On the bright side, you now can start the process toward getting him additional therapy, etc. With a new baby, it might have been distracting and been something that would have been difficult to get around to right away.

I'm sure the timing is difficult, but at least you can start down the path of getting him more services now vs. later.

Many :hug: to you mama. He's the same child he was before he got a diagnosis, but now you can come up with a more thorough plan.

It is totally normal to go through a huge range of emotions.

[DrSally]

I'm so sorry you're going through this. I do think you did the right thing by getting an eval right away. It is hard to deal with, but so much better to be on a path...Sounds like he could def benefit from much more therapy. I find it very hopeful that he said it sounds like it's improving, could very well be corrected by 1st grade etc.! That is very good news IMO. It's also a very good sign, I think, that he's beginning to make progress in speech therapy. Hopefully more therapy will produce better and more results. There are adults that had the PDD or Asperger's label as children that function very well, so the diagnosis may not mean much down the line, KWIM. Hugs to you and I hope you feel better that you shared.

ETA: ITA with what JT'smom said, "Someone here told me to try to remember that a label doesn't change who he is- he wasn't suddenly someone else- he was still DS. The big difference was that now we could start helping him."

[o_mom]

More :hug: to you!

I hope you can get things rolling so you can enjoy the new little one. I know EI for us was a lot of call and wait, so you can hopefully have all the red tape done about the time you are out of the 'babymoon' phase and ready to get on with it.

[gatorsmom]

So after his exam the neurologist concluded the following. That mike definatly has a speech delay that needs more therapy than once a month. And that he's right on the edge between just a delay and very very mild PDD. He even admitted that ds was "a tough nut to crack" and not an easy diagnosis. But also that had he seen him 6 months to a year ago he would probobly have said that he was autistic. The good news is that he thinks since it's manifested itself in his speech alone and not socially or sensory that with time,growth and therapy that he'll simply outgrow it and that he's most likely already started to outgrow it which is why we're seeing the speech improvement. And that he'll be fine and in mainstream school by the time he's in first grade. And that aside from the speech delay he is a normal,healthy child.





I know you wanted something different but this is a very positive diagnosis. The fact that the pediatric neurologist thinks that he'll most likely outgrow this and be ready to mainstream by the time he's in first grade is wonderful. Truly wonderful. The diagnosis could have reflected a much more significant problem. I know you are disappointed but if you can go into the hospital with the knowledge that Michael will outgrow this relatively quickly, I would think you this would put your mind a little at ease and allow you to enjoy your babymoon. Big hugs. You are doing the right thing for your child and putting on a brave face even though it's hard. You are a strong mom.

p and pt for your delivery.

[Gena]

So after his exam the neurologist concluded the following. That mike definatly has a speech delay that needs more therapy than once a month. And that he's right on the edge between just a delay and very very mild PDD. He even admitted that ds was "a tough nut to crack" and not an easy diagnosis. But also that had he seen him 6 months to a year ago he would probobly have said that he was autistic. The good news is that he thinks since it's manifested itself in his speech alone and not socially or sensory that with time,growth and therapy that he'll simply outgrow it and that he's most likely already started to outgrow it which is why we're seeing the speech improvement. And that he'll be fine and in mainstream school by the time he's in first grade. And that aside from the speech delay he is a normal,healthy child.

I'm certainly not an expert, but to me this does not sound like autism/PDD.

Autism Spectrum Disorders involve dificulites in speech/language, social interaction, and play skills (which includes sensory issues and repetitive behaviors, such as "stimming"). A child needs to have problems in all three areas to qualify as having autism. Sometimes, a child may have problems in one or two areas and have "autistic traits", but not have autism. And some doctors are very loose with the diagnosis of PDD-NOS, and will give it to to a child with minimal signs of autism.

Other than speech issues, what red flags was the therapist seeing? If your child has no social delays and no sensory issues, and only speech and language problems, ASD is probably not the appropriate diagnosis. A speech or language delay or disorder seems more likely. Specifically, social difficulties are the hallmark of ASD. Additionally, most doctors do not believe that a child can "outgrow" an ASD. Therapy and treatment can help lessen the symptoms, but the autistic tendencies will always be there.

What took place during your son's exam? Did he do the ADOS? While this test is not perfect, it isoften considered the "gold standard" in evaluating for ASDs and where a child falls on the scale can indicate a lot. I hate to say it, but some doctors are not as thorough as they should be when evaluating for ASDs. My son's diagnositc process took six months and involved meeting with several doctors, therapists, and other professional and having many medical tests and evals done. ASD should be a diagnosis of last resort: it's what's left when all other possible conditions have been ruled out.

Have you looked at the Childbrain.com website? They have some great information on ASDs and a very helpful screening questionnaire. It's not a diagnostic tool, but it can give you some insight into what to look for, when to be concerned, and what signs to talk to the doctors about. http://www.childbrain.com/pdd.shtml

I know that this is a lot of information to wrap your head around at a time when you really should be concentrating on the upcoming birth. It's hard that the timing worked out so badly. Since your son is doing so well and getting the therapy he needs, you can put this issue of diagnosis on the back burner for now and return to it another time. But later for your own peace of mind, you may want to revisit the issue.

I wish you continued progress for your son and a healthy delivery.

[MamaKath]

First huge :hug:!!!

Michael hasn't changed because of a dx. He is still Michael. But do give yourself a chance to "mourn" the image you had that has somehow changed. It is okay. Then get back up and go from there.

I do agree with Gena that it seems like very little testing for a very big dx. My experience has been that doctors do not typically put a label like that on lightly. You may want to seek a second opinion from a developmental pediatrician or additional pediatric neuro. I would still seek out services in the meantime and get those in place, as starting sooner rather than later is most beneficial.

You may also want to check out the Special Needs Parenting board at MDC for a lot of btdt experience.

[elaineandmichaelsmommy]

WOW! I can't believe the support from you guys. Thanks so much everyone for writing.

I'm actually not that upset about it anymore. We simply got the answers we needed and due to that I was able to get him started on the road to additional therapy through our school district. It'll make our schedules a little hectic for awhile but I know it's worth it and best of all we'll no longer have to pay for the therapy out of our own pockets.

To the pp's who expressed concern about our diagnosis. The neurologist in question has 30 + years of experience and we're willing to trust him. In the end he told us to do what we've already been doing just to do more of it. So whether it's PDD or the hong kong hangnails the end result is the same. But thanks for your concern.