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D.C. Area Babies
Need a little support.
I know I haven't been around really in a while (heck some of you won't recognize my name, lol). There is a reason for that.
Ben started exhibiting speech delays and some behavioral concerns. And last week we got our diagnosis - PDD-NOS (pervasive developmental disorder-not otherwise specified). On the autism spectrum, it means that he exhibits some but not all autistic behaviors.
If I haven't been working, I've been dealing with Early Intervention, then ChildFind. Lots of meetings, evaluations, appointments to find out what's going on. Plus the speech therapy. We finally got into Children's after waiting six months for an appointment/observation. It's been difficult juggling everything - let alone trying to keep Ben involved in activities. However, it's always a crapshoot whether or not something works out.
Anyway, I posted over on Special Needs but I don't know if anyone local is going through this. There has to be, in an area this big. 
I've been hesitant to post this before now because everyone else's posts have, been, like, happy. Mine is a little downer. lol But thanks for reading.
This discussion has been closed.
Re: Need a little support.
I'm so sorry to hear that. I know it must be a very difficult time trying to juggle everything that is going on. It sounds like you are doing a great job of advocating for him and making sure he gets access to the services he needs which is one of the best things that you can do for him. I hope that he can get the services that he needs and that you are getting some sort of support as well. {{Extra hugs for you.}}
For the longest time, I thought I was the only one, and I never had the courage to post here asking for advice -- thanks for breaking the ice. If anyone else is going through anything like this, please feel free to page me or email (jengknight at gmail) or visit us over on Special Needs. I am by no means an expert, but I've been walking down this path for just about a year now. It is so overwhelming and frustrating and scary. But when your little one says "mama" for the first time when he is nearly 2.5, or tries his darnest to say his little brother's name and give him a kiss, you realize all the hours, and tears, and effort are worth it.
I'm so sorry L&H, this must be so difficult for you and your DH. I don't have any experience as a parent but I used to teach special ed and worked with kids with autism. I'm very surprised they have given him a label and this point, usually with children his age are given a DD label. As far as the spectrum goes, that is a very promising diagnosis. I never had any students with PPD, I taught self-contained (all kids with special needs in one room). Students with PPD were generally mainstreamed. He may be delayed now but he has a very good chance of having a very normal childhood.
I have a friend with a 4th grader who is diagnosed as PPD-NOS. He is in a mainstream classroom full-time and is involved in extra curricular activities. If you ever want someone to talk to who is a little further down the road, I'm sure my friend would be happy to chat with you.
You are doing the best possible thing for him by getting him into EI. You are an awesome mom! *hugs*
DD1 9.24.06
DS 7.1.08
twins due 9.7.11 lost twin A at
DD2 4.7.12
I think it's very admirable for you to step out and bring this to our board as I'm sure there are people dealing with it, but don't know where to turn.
One of my nephews has been diagnosed with aspbergers and I know it's been difficult at times seeing my brother and sil dealing with it. It stays in my mind as I work with DS on his speech delays.
Would you mind sharing with me what you saw in your child as far as speech and behaviors that led to the diagnosis? You can pm or email (dnargerson at hotmail dot come) me if you would like.
i don't know any local groups around here, but i have a plethera of information on ASD. please feel free to contact me for any help or even to just get things off your chest. if it's one thing as a teacher i am pretty good at, it's working with children who have special needs.
also, some things to look into:
1: there is child care assistance for parents with children of special needs (my neighbor gets 50 hours of daycare provided a week)
2: the public schools have fabulous preschools that have tons of resources.
good luck and i am sorry.
I am so sorry you are going through this. I teach first grade and have had several students across the autism spectrum in my classroom. As others have said, the most important thing you can do is be an advocate for your child - which you are doing an awesome job at already. I don't know what area you are in, but if you happen to be in Prince William Co. and have any questions about schools, I am happy to help.
Lots, and Lots, and Lots of hugs...
TTC #2: BFP 12/17/11, m/c 1/7/12 and D&C 1/12/12
baby blog/cooking blog
While I have not personally gone through this, I have a good friend with a similar success story. Like you she works incredibly hard advocating for her child, getting him into different doctors and utilizing all available local resources. His diagnosis was further along the autism spectrum around 2.5 but today at 6, he is mainstreamed in a classroom, has friends, shows empathy to his siblings, and unless you knew this little boy a few years ago, you would hardly know his struggles. They too credit the gluten and casein free diet with changing behavior. They do a crazy regiment of vitamins as well. If you are interested in talking to her, I am certain she would love to share their story and offer support. She is really involved in her local autism support group. While they live in PA, they see a doctor in MD whom they credit with giving them their little boy back.
Best of luck. I can't imagine how hard and frustrating this is, but I think there is so much hope too. Did you read the WaPo magazine article about the mom who said her son is cured of autism? I cried while reading it, it was really moving and I believe referenced a lot of resources.
Aw, shucks, thanks y'all. I started to tear up a little.
Sorry, this will be a long post.
Anyway, the speech delay was first - he met most milestones just fine but by 18 months had no real words, then he regressed and didn't even babble. Personally I didn't talk until I was 3, was diagnosed with speech dyspraxia and spent 10 years in therapy. So I could see signs. Originally EI didn't think he was eligible so I had a third party speech language pathologist (SLP) observe him at daycare. The report was stunning enough for EI to reassess and admit him for speech. We started that in January, and he has made great progress.
However, the 3rd party SLP and the EI SLP all saw concerning behaviors - fixation, repetition, difficulty in transitioning activities, biting (yeah, I'm one of "those" parents), lack of focus, etc. Both suggested getting in to see a developmental pediatrician. Also, since EI goes from zero to three he needed to transition to ChildFind (LoCo) which takes like 6 months. That psychologist also determined autistic behavior, and he qualified for ChildFind under the developmental delay category. Finally we got the diagnosis from the develop pedi two weeks ago.
Oh, and did I mention the biting? Sigh, we ended up pulling Ben from his previous daycare b/c his biting along with other management issues (communication and support wise) had pushed us away.
Jen - one of the best things I have experienced also is when he actually says "mommy" and means it. Would love to e-mail you.
Dena- I will e-mail you later also about the speech. J
Brandy ? I?m interested in the child care assistance info. Ben qualified for 5x week AM preschool but then we will be paying fulltime tuition at another daycare for essentially halftime. Can you e-mail me (lion_hokie@yahoo) or on FB?
As for gluten/casein free, yep we?ll be looking into that. Thanks guys for reading. Even if you can't offer info, just the {HUGS} and acknowledgement mean alot to me.
I don't have anything to add... but, just wanted to send virtual hugs!
Hang in there!
I am sorry that you are having to go through this.
Hugs
L&H, I'm so sorry you have to go thru this *HUGS!!*
this board is always here for you, it's not just for the happy/good, plenty of us come here to vent and for support
Was also going to suggest amalah.
HUGE hugs! We went to child find to have carter's speech evaluated and they were wonderful. We had a HUGE speech explosion around age 2-2.5 so we didn't qualify but they were fabulous to deal with.
Hang in there!
It's good to see you around again. I don't post often but noticed you hadn't been here. You and your family will be in my thoughts.
Oh sweetie, I'm sorry! B has an awesome momma and daddy though and I know that as hard as this is you guys are doing everything possible to get him whatever help he needs.
I have no other real advice to offer, but I second the idea to read Amalah's blog if you don't already. Noah is 4 years old now and they've been dealing with his issues for a while. (In fact, there was a post about it today) It's an interesting read and might help you feel like there's other people out there struggling through the same life....
BIG HUGS!!