[Serenity Now]

I'm looking for mamas who have a child with a PDD-NOS diagnosis.

I posted a couple of months ago in Toddlers about my son's speech and language delay. He is now 20 months old with almost no language at all. He has no words, and he understands almost as little. At his last evaluation they mentioned PDD-NOS, Pervasive Developmental Delay - Not Otherwise Specified. This is the first I've heard of this, but they told me that it is like autism, but for kids don't don't fit the technical autism diagnosis. My son has some signs of autism, like not holding eye contact, strict adherance to a daily routine and schedule, no attempt to communicate (no words, gestures, or imitations), and so on. However, he doesn't have many of the social charactersitics, like he does point things out to me, he pretend plays, he is generally very affectionate and tries to make people laugh.

I'm not sure what questions I have. A professional tells you that your son may have something like autism, and it's like your brain just shuts down. I wonder at what point they would actually diagnose this? Am I going to have to wait for years to have a diagnosis? Once he is diagnosed, then what? I wonder what kind of journey this will make for us as a family. My head is just spinning right now.

:

In my heart, I know there is something that is wrong with my son that goes way beyond "late talker." I've always felt there was something off about him, and little clues and puzzle pieces are starting to materialize. D*mn, I wish I had been wrong.

I do have another question, for those with more than one child. How do you keep from spoiling the one who has a diagnosis? Right now I feel like I want to buy him a million toys and take him somewhere quiet and just hug him for hours. I'm guessing this will wear off?

 

[LauraLoo]

Quote:

Originally Posted by Serenity Now . My son has some signs of autism, like not holding eye contact, strict adherance to a daily routine and schedule, no attempt to communicate (no words, gestures, or imitations), and so on. However, he doesn't have many of the social charactersitics, like he does point things out to me, he pretend plays, he is generally very affectionate and tries to make people laugh.

Please know that pointing out things to you IS communicating. And he is communicating by being affectionate and making people laugh. Even though the absence of words can be disheartening, it sounds like your ds IS trying to communicating by other means. Have you tried teaching him sign language or baby signs? We did this with my ds -- an it helped out a lot and bridged the gap when ds didn't use many words.

We don't have a diagnosis of PDD-NOS, but ds is speech delayed and has sensory issues.

 

[spero]

PM mmace. Her son has this dx and was speech delayed.

 

[Serenity Now]

Thanks, Laura. My son has been in speech therapy for more than 2 months, and we have been using signs at home. I know that he is communicating, especially how much he loves me. But as far as verbal communication goes, either receptive or expressive, he has no interest at all. He has made no progress at all in ST, and actually, he seems to have regressed. He could say mama and daddy specific when we started therapy and he had one word, but now he has no words at all, and doesn't even say mama and daddy anymore.

Thanks, skellbelle, I'll look into that.

 

[Megamama]

Hi!
We do have a dx of PDD-NOS. This is the class of Autism Spectrum disorder where basically they stick anyone that doesn't fit in Asperger's or Autism.
Elijah is just 4, and he's sweet, affectionate, and loving. He's a doll, yk? But he has some issues. Speech was fine until he was around 2 then he lost it. He isn't developing at the same rate as other kids his age.
The good news is, his personality is fabulous, he plays with toys well, and with speech therapy he is learning very rapidly to speak well and take directions. Getting your child the right help is a very positive thing and it really helps you feel good that everything is going to be OK.
I know how you feel right now, because I felt it too. I especially felt guilty for not going sooner to get him help. You don't need an official diagnosis to get him the help he needs, though sometimes it helps. I don't know what is available where you live, but we had a developmental pediatrician see our son and he did the diagnosis.
Eli is doing great now, seriously. OT and ST and the preschool he has been in are doign wonders for him!

 

[jaye]

Quote:

Originally Posted by Serenity Now I do have another question, for those with more than one child. How do you keep from spoiling the one who has a diagnosis? Right now I feel like I want to buy him a million toys and take him somewhere quiet and just hug him for hours. I'm guessing this will wear off?

I know what you mean - I do still spoil mine!

Your boy sounds a lot like my youngest who is PDD-NOS. He also is very social *with us*, doesn't have any stereotypical autistic characteristics like stimming, doesn't actually care about routine though - but very little attempts to communicate until he was almost 3. He is still mostly non verbal.

I'm not sure what state you are in or if you already have him in Early Intervention but that should be one of your first steps. I would also suggest the book More than Words - it is pricey but they often have them used on ebay or maybe the EI folks can lend you one. It is a great program for encouraging language in kids with ASD.

Also, we had a lot of success with the sign language videos called Baby See n Sign (available at netflix) and also Baby Babble. He learned a ton of words really quickly and it really got him excited about communicating.

I would work on engagement activities asap - look at Stanley Greenspan's Floortime books.

I know there are specific diets and supplements that are supposed to help with language but I'm not certain which ones. We do a lot of supplements for his brain like EFAs, B complex, Cal-Mag.

Feel free to ask me questions or PM me!

 

[**guest**]

My ds has PDD-NOS and has speech delay. He'll be 4 next month and he can't have conversations like other children his age. It makes me sad. I just keep hoping that his therapies (speech, occupational, Physical) will help him to fit in better.

Feel free to pm me.

 

[CerridwenLorelei]

my ds has PPDNOS among other things

It is hard to not spoil them sometimes but yes it will pass

 

[sbgrace]

D*mn, I wish I had been wrong.
Oh boy can I identify with that feeling!
My son received a PDD-NOS diagnosis this past summer (he was 27/28 months).
My son, like yours, points things out to us, has pretend play and is a fun loving, affectionate boy (hugs his brother, plays with us and his brother, kisses us, likes to be funny for us, etc.). I was told when he was younger that I should quit worrying because he was too social....well, they were wrong (oh I wish they were right). Like your son also he did have signs though and some of those have become more pronounced as he has gotten older. And I don't have any doubt now that he is indeed on the autism spectrum. The thing is, it is a spectrum--some kids are more affected than others and in different ways in various areas. And pdd-nos by it's nature means a child fits the criteria in some areas but not others. I've been told my son may actually end up with an aspergers diagnosis when he is 5 or 6 (or maybe still be pdd-nos) but they can't assess aspergers particularly until older while they can still say at a young age the child is on the spectrum.
The age at which someone will formally diagnose varies. Some specialized places will do it very young (younger than your son). Most people are more comfortable after the age of two but some still don't want to see higher functioning kids at that age.
For me, when I was first told my son seemed to have an autism spectrum (no diagnosis) I decided to take action as if he were so I started interventions with him. I can share what when you are ready if you are interested but I know right now you are overwhelmed. Autism isn't hopeless at all; I do think early intervention (the right ones for that child) can make all the difference. It does change the journey for your family but remember it doesn't change who your son is. He is still the same beautiful boy as he was before you got this news. In our case, the actual diagnosis was a relief for me. I was spending too much time and energy worrying about what might be wrong (autism or something else) and hoping not (it was becoming more and more obvious the closer we got to two that he'll grow out of it wasn't probably an option). Once we knew for sure what we were dealing with I could put that energy into helping him reach his best potential. I can't describe but the actual formal diagnosis was sad but a relief in a way. As far as spoiling I don't know! I think that feeling of wanting to just hold them, hide them, protect them comes and goes as you face things together. My emotions fluctuate. Andrew has a twin brother. I don't think I treat Andrew preferentially over all though I did feel that way at first now that I think about it.

Please feel free to pm or email me if you want to share or if I can help in any way.

 

[rbear4]

My dd's first diagnosis was PDD-NOS when she was 4. She was speech delayed then but then caught up language wise. Her diagnosis had changed to Aspergers (and epilepsy for her). My son is ASD as well.

I have 4 kids and the spoiling does wear off. However, I will let you in on a secret. Fair isn't everyone getting the same, it is everyone getting what they need. Sometimes it may seem that more money is spent on the ASD ones because they need it but I am also careful to spend time and lovin on my non-ASD kids.

FYI, my kids are now in 5th and 7th grade and while they are still on the spectrum they have come so incredibly far it is amazing. They are the neatest 2 pubesant kids in the universe and make me proud on a daily basis with thier growth.

Sure there are still struggles but it has gotten to be ok now and I appreciate them for the human beings they are. When my son made it through his very first basketball assessment the other day without a meltdown I was so darn proud I nearly burst. He is 10. You just really learn to stop and smell the flowers and appreciate thier accomplishments based on themselves.

 

[ryansmom02]

We also have pdd-nos
Ryan has a great personality he is loving and affectionate.

He has a speech delay
sensory issues
hyperactivity
no eye contact
odd behaviors
has the need for sameness

I can go on... Pm me any time... My son was helped alot by OT and ST 3 days a week...

 

[williamsmommy2002]

We have a PDD-NOS dx and William is speech delayed. My ds was dx'ed at 46 months. We have had a huge inkling that he's been on the spectrum since he was about 18 months and actively pursued diagnosis since 3 years old. We started interventions with William at 18 months old when we knew something was going on with him.

Anyway, he has a speech delay that ST has helped him a lot in. He can now hold some simple conversations(a year ago he had very little language). He is loving and affectionate and has started to make eye contact with us. He doesn't interact very much with kids under the age of 8. He stims and has a definate need for routine. He also has a huge amount of anxiety.

 

[iris0110]

My 5yr old has a PDD NOS diagnosis along with speech delay and SPD. And he is just the most amazingly bright and loving child in the world. But day to day life can be kind of tough. I feel badly for him because he struggles. We have done Speech, OT, and recently added riding therapy. He has been in therapy since he was 2. It has never actually done anything for him (except the riding therapy which in just a few months has made a marked improvement in his confidence). He is now seeing a DAN! Dr. and has been improving rapidly. We are very grateful. But he still can't interact totally normally with other children. Like a PP mentioned you can't have a conversation with him like other kids his age. He doesn't ask all of the why questions and he doesn't understand things in a social context. He isn't potty trained yet because even though he knows when he has to go and the mechanics of using the toilet he can't understand why it is preferable to using a diaper. The nice thing though is that he doesn't lie. He doesn't understand the social pull for it, or tattling. He is also fairly patient for a child his age.

As for spoiling. I guess it is because he is the oldest and our youngest is very high needs, right now ds1 is far from being spoiled. I just posted about how I feel like I am neglecting him alot lately. But yes I do think I am pulled towards spoiling him. Like you said I have wanted to run away with him to a nice peaceful place and just let him be. We would have such a great time. Especially after a really bad OT appt. But I know this is what he needs. He has to learn to function in the world if he is going to have a normal life. And I worry about what would happen to him after Dh and I were gone if he couldn't. But it would be soooo nice to not put him through all of this. In fact, one of the reasons we decided to have another child (other than jsut really wanting another child) was because I was afraid I was getting way to involved with ds1. I was afraid that because of him being an only child, and having special needs I would get too wrapped up in taking care of him and he wouldn't be able to learn to separate and fend for himself. I didn't want my involvement with him to become too stifling for either of us.

 

[Serenity Now]

I haven't come back to this thread because I've been mulling over the posts for a while. There has been so much support and so many words of wisdom here that I am in awe.

I'm feeling much better about the whole thing now. I was devestated. Now, though, I know that I just love him for who is he, and that is not conditional. So I love all of his quirks as well, because it's just a complete package of who he is. This realization has really helped me relax and stop focusing so much on trying to figure him out.

I have lots of decisions to make, like how much I'm going to push for a diagnosis, or if I'm going to push to not have him diagnosed right now. I also need to figure out if or what I'm going to tell the family as well, and how I'm going to handle strangers when we're out if the situation arises.

I need to let go of knowing what the future holds for me and my family. I'm not a real day by day kind of person, but I need to learn to be one now. I'm kind of feeling my way along right now, but I also feel confident that we have a strong loving family and we'll be just fine.

How many hours of therapy do your children do a week? I'm having a bit of a struggle with the ST because our insurance has approved us for 2 hours a week, but I haven't been able to get them to get them to schedule us for more than 30 mins a week. I am pretty sure that during our follow up ped. developmentalist appointment he is going to set us up with the therapy that PDD_NOS kids need, but I'm not sure what that entails.

 

[**guest**]

My son doesn't get much ST...Our public school is cheap. He only gets 1 hr/week. It's broken up into two 30 minute sessions.
He gets 30 min of Occupational therapy.
He gets 30 min of Physical therapy.

 

[Megamama]

Eli used to get an hour a week privately, 30 min of OT privately per week.

Now we are goign through the schools because we won't have ins. until january with my dh's new job..so the school has approved 2 hours of ST and 2 hours of OT weekly, but a lot of that will be in a group setting and very little alone. However, the school has a special sensory integration room they go to every day which is pretty darn cool called Snoezelen. We'll see how it goes..it's all still too new to see how it will all affect him.

 

[mmace]

I only have like two minutes, so this will be short - but I promise I will be back. My son was (finally) diagnosed with PDD-NOS shortly before he turned five. I had been telling pediatricians for years that he needed an evaluation, but kept getting the standard "he's a boy" "he's just late" "he'll grow out of it" until finally I told pediatrician number three "I will get him diagnosed, and when I do I will tell anyone and everyone that I can find that my son had a problem and you refused to help him". He wrote me a referral immediately.

He did speak, but was way delayed. He was affectionate, but only with me. He lined things up. He had to wear socks 24 hours a day no matter the weather. He had to have a very structured routine. Making the change from long sleeves and coats to short sleeves was traumatic. He only started wearing shorts two summers ago, and it was *huge* for our family. When he was in preschool they had this carpet with the alphabet on it - on the first day of school he sat on the green letter Y. After that, in his mind, that was his spot and if he didn't get it his entire day would be ruined. We went through three rounds of speech therapy and started working with him on some of the other things.

Now he is an eight year old second grader in a mainstream class with no IEP, no therapies, no special help at all - just a family that loves and supports him and teachers that understand and help him. On Tuesday I attended an awards assembly and watched my boy receive High Honor Roll for the fifth consecutive time - he received it all four grading periods of first grade and this first grading period of second grade (they don't have that in kindergarten). He is loving and kind. He is much better about varying from routine. His speech is totally on grade level. He relates pretty well with his peers. He gives me hugs and kisses all the time, kisses his baby sister on the forehead every night when she goes to bed, and kisses his big sister on all special holidays - after all, we all know that thirteen year old girls have cooties. ;-)

We still have issues - Wednesday my oldest daughter ripped her last contact and we had to make a trip to Sam's Club after school for an eye exam. He was tired, cranky and overstimulated, and the trip ended with both of us in tears and coming straight home instead of stopping somewhere for dinner. But those times are coming fewer and fewer - honestly, before Wednesday I can't tell you the last time that happened.

Honestly he is the best boy. Parenting him is a challenge (I'm also a single mom of three) but it is also so rewarding, because I watch him beat the odds every day, and know that my love has played some small part in it.

At times I do fear I favor him over my girls, and I try to be so careful, but honestly, I think it is because he *needs* me more than they do, not because I love him more.

My biggest piece of advice I can give you is to not let that (or any!) label define your child. When (and if) he does receive that diagnosis, he will be the same exact boy he was the day before, you'll just be able to get the help he needs. That's all. It won't change who he is, and it won't change how much you love him.

I'm always just a PM away, if there is anything else I can do for you...

Hugs,
Marissa

 

[sbgrace]

I'm glad you are feeling better. It is devastating at first. You adjust (and the feelings and all do come and go or at least they did with me--everything is a process).
You asked about therapy. When my son qualifies for a therapy (we have at different times had speech, physical, occupational, developmental) it is for an hour. I would question them as to why only 30 minutes (perhaps it is availability?). Two 30 minute sessions might be better for some kids if that is possible. Many PDD-NOS kids in addition to speech might receive occupational therapy (for sensory and fine motor delays). Some need others...it really depends on the child (my son has muscle tone issues related as well so from time to time has needed PT). My son isn't benefiting much anymore from his OT or speech/developmental though he still receives them (1 hour each each week) and we do riding therapy too (that I do think he is still benefiting from) for 30 minutes each week. I am doing an autism therapy with him that is helping him a lot so that is his main therapy right now--time spent each week varies.

 

[iris0110]

It is such a hard thing to have your child diagnosed. You want answers, but you don't want these to be the answers. I went through a greiving process with it all, not at all unlike greiving when I lost my daughter. We refused to allow them to label him for several years. I didn't want him to have that stigma attached so we left it at speech delay and SPD, things without much stigma if any. But we had a hard time getting the insurance to pay for therapy after ECI ran out at 3 so eventually we went ahead and accepted his diagnosis as a way to get him the therapy and extra support he needed. I wish I had stopped being so stubborn several years ago, he would be alot further along now if I had. But you have to do what is right for your child and your family and at the time I really thought I was protecting him. I thought things would get better, and they just didn't.

For Therapy Kearnan does 45 minutes of feeding therapy, 45 minutes of OT, 1hr of speech at the school and 45minutes of riding therapy a week. He is supposed to get another day of feeding and OT as soon as they can get him worked into the scheduel. The OT and feeding have helped some, and the riding therapy really is a great blessing. The speech does nothing at all but he likes his teacher and it gets him out of the house for a bit. Before Tharen came along I did alot of work at home with him, but I will admit that we haven't been doing as much lately.

Since I finally admited to myself that he is different we were able to apply for SSI and medically needy insurace which covers his therapy and the bills to take him to a DAN! Dr and buy his supplements which we couldn't afford before. I have also found it easier to admit to others what is going on. Our family always knew (though I don't think most of them really understand what it means) but now when people ask I don't blink about telling them that he is Autistic. Sometimes when I see people giving him dirty looks or hear their snide comments I turn around and say "He's autistic, What's your excuse?" It has actually been a freeing experience for me at least. I don't know about dh, he still doesn't use the label much.

 

[mamarhu]

My boy has PDD-NOS, SID, PTSD(Post traumatic stress disorder), speech delays, and serious dyslexia. At first, I wanted to make him normal. I looked for "cures" with diet, and so many therapies. He was in all manner of therapy through EI and public school until age 7. As far as I could tell, none had any inpact. They were far more concerned with his behavior (in the school system, that word means discipline and compliance) than his education, and all focus was on what he could not do. At 7, I took him out of public school and began homeschooling him, losing my connection for therapies. But, lo and behold, he is blossoming! My intuition was right, that all the attention paid to his "problems" just created more stress. He still has the occaisional meltdown due to sensory issues, fairly extreme feeding issues, and his social interactions are difficult at times. At 10, he cannot read, and I have just found a dyslexia specialist who is willing to work with kids on the spectrum. Starting next week!

Anyway, the point of all this is that as soon as I stopped trying to "fix" YoungSon, many of the problems started to dissappear, or at least diminish. Now, rather than seeing him as a bundle of diagnoses and problems, I am free to love him for exactly who he is, accomodate his needs in the ways that best suit all our family, and appreciate his strengths. It is so much more fun this way!!