Thursday, April 14, 2011


I have been debating with myself about posting about Boo. You see, there is just so much that we are still learning and discovering about our sweet boy and his educational diagnosis of PDD-NOS.

PDD-NOS is the acronym for Pervasive Developmental Delay - Not Otherwise Specified. PDD-NOS is sometimes included on the Autism Spectrum but not always. And even though he does have PDD-NOS, we have not been told that he has Autism. It's kind of a weird, confusing thing to me actually.

But to explain what he does have and how we have gotten to where we are right now, I'll go through the basis of his history. When he was born (at 39 weeks via scheduled c-section) he was not breathing. The umblical cord was tied in a knot. Much like the knot you make when you are tying something. Just a simple knot. But a knot that was cutting off vital oxygen and blood to him. We were told that had we scheduled the c-section for later than we had, he could have died. As it was, he wasn't breathing and had to be resuscitated and given blow-by oxygen. I didn't get to see him for three hours. It was horrible. They got him to breathing well on his own and by the sixth hour (I believe it was around that time) he was able to stay in my room with me. Prior to that, he had been able to come in but had to go back for further monitoring. His apgars were something like 2,9,9. The only thing he had going for him during that first set of apgar scoring was his heartbeat. That's it.

He recovered well from his birth and was a nursing pro. When he was just shy of three months old, he began having bowel and reflux issues. We thought maybe it was just reflux. We took him to a doctor who deals specifically with nursing babies and allergies/intolerances. She diagnosed him with MSPI (milk, soy protein intolerance), so those things were eliminated from my diet. But he still was not getting better, so we eliminated more and more things. Eventually, I went on TED, the Total Elimination Diet. I was able to only eat turkey or lamb, baked or boiled potatoes, sweet potatoes, rice or millet, squash, pears, and pear juice. That's not a lot of options. It was hard, but I did it. After two weeks' time, I was able to add items back in one at a time (much like you do when you are introducing solids to your baby for the first time) and then had to watch him to see if he began reacting to it. What we were able to determine was that he had intolerances to not only milk and soy but also to beef, eggs, nuts, hmm, there were more things but now I cannot remember them... Eventually (around 7-9 months of age), he was able to tolerate most of those foods in my diet in small quantities. He stopped nursing around 9 months old and we had him on a soy-based formula, then switched to regular formula. He began babbling and even saying a few words by a year old. Around 13 months though, he started reacting to something again, and at that point, we eliminated all of the foods we knew he had issues with prior to that. We even had him on goat's milk for awhile because he seemed to tolerate that but eventually, he began reacting to that as well, so we switched to rice milk for him instead. It was around this time that his world went silent. He didn't talk or babble anymore, but he was also learning to crawl and so we thought maybe his energies were tied up in mastering this feat. More and more though, he withdrew and after awhile, he wouldn't make eye contact either. He didn't play with the other kids, didn't really even acknowledge them. We made an appointment with his pediatrician.

His pediatrician ran a battery of tests to try to determine a physiological reason for his delays and regression. But there wasn't a physiological one. He referred us to our city's public school program.

At 19 months old, he had his first evaluation with the school system, at which point, he was diagnosed with PDD-NOS. Basically, PDD means across-the-board developmental delay. He was behind in EVERYTHING. From social and play skills to cognitive abilities to gross and fine motor skills. He had learned to walk just one week prior to the evaluation. The NOS part of the diagnosis means that there isn't a physiological explanation for it.

So, we started services. We had a wonderful home teacher, Jane, who came out about once a week to work with us and Boo and he gained quite a bit of ground while we worked with her. We worked with Jane from May 2009 until October 2010, when Boo enrolled in a traditional classroom setting.

We had two options for his classroom. One was more of an ECSE (Early Childhood Special Education) format, where most of the children have IEPs (Individual Education Plans) with a few peer models thrown in for balance. The other was basically an inversion of the first. Mostly peer models with a few kids who have IEPs. We chose the second one, feeling that it would be of the most benefit to the boy.

He has done wonderfully! He is still behind quite a bit socially but is catching up. His motor skills are just minimally behind, his play skills are also still fairly behind but we have seen some recent improvements in that as well.

For instance, we went to a classmate's birthday party a couple of months ago and the main activity was bowling. The event was slated to start at 11:00 sharp. We got there a few minutes prior but waited in the car until a few minutes before 11:00. We went inside and I let him run loose around the alley with the other kiddos (it was a confined area at a fun center and we were the only party in there). We didn't actually get started until around 11:15. That is a LONG time to wait for something fun to happen in Boo's world and I was fully prepared for the meltdown that I was pretty sure that would happen, but it didn't.

We started out on lane four, as you can see. The guy is the birthday boy's father. He was helping the kids bowl down the lanes (and we had bumpers for the kiddos too.) Boo was in a lane with two little girls that we didn't know. I think they were family or family friends, not classmates.

He had a hard time waiting for his turn to bowl, though no meltdowns there either. At one point, our lane broke. I don't know what the deal was, but of course, it was Boo's turn. I had just spent the last two kids' turns telling him that it was almost his turn and when we finally got up there, he got his ball and I had to stop him. "Not yet, Boo. The lane isn't ready. They are going to fix it though." So, he stood there patiently and my heart grew with pride about how well my little Boo Buddy was waiting. He stood there and held that 8 pound bowling ball for a full five minutes (it felt like an hour to me!) until they decided that the lane was unfixable and then worked us into another lane that already had three kids bowling in it.

And the kicker? He went from it being his turn to having to wait for FOUR children to bowl before it was his turn again. So in all, he had to wait for TWO children, then for a broken lane repair attempt, readjust to the new lane and then had to wait for FOUR more children to bowl. That was kind of difficult to explain to him. It was supposed to be HIS turn after all. But he took it in stride.

I think this is what helped. His little friend from school, Miss H. Isn't she a doll? So, I got to talking with Miss H's mom and she was telling me that H talks about Boo at home and I just stood there. Because while Boo talks, he doesn't exactly tell stories about things that he has done, people that he knows. All of his communication is in the moment or the immediate past (i.e. "Punky hit my back!" as he tattles on his sister, and even that has been a recent development).

I love this picture of Boo. I think it is probably one of his best. This is one that is going to go into our portfolio this year for his school. We have to make a portfolio of some of the family activities and things that we have done with him.

And then lastly, a shot of Boo with two of his classmates.

One really recent development with Boo has been in his communication. Although he doesn't really talk much about things that he has done, seen or experienced, I try to prompt him for information. After school one day recently, I asked him if he had played with Master C (the birthday boy in the above photos) and our conversation went like this:

Boo: "No. I play wif [Master M],"
Me : "You played with [Master M]?"
Boo: "Yes. I play wif [Master M]."
Me: "What did you play with [Master M]?"
Boo: "We play cars. Vroooooooom!"
Me: "You played cars with [Master M]! That sounds like fun. Was it fun?"
Boo: "Yes. Fun play cars wif [Master M]!"

That was the longest "conversation" we had ever had. It still might be.

I just love the way he talks! He has some really unique ways of saying things and he is very obsessed with letters and numbers. Some examples of Boo's language:

"Open hand!" This is said when someone is holding his hand or arm to keep him from running off. Instead of saying "let go", his command is "open hand". It would get the same result if obeyed, but is just a different way of saying it.

"Mommy, you home. I home." This is what he says to express that he missed me while I was at work. It doesn't matter if we are in our house or if I am picking him up from Grandma's or whatever. If he missed me, this is what he says. He also says this to express love. It's a situational phrase.

"Mommy, I find your blue!" He says this as he runs to me, holding either my (blue) phone or my (blue) camera. I tell him, "thank you Boo, for finding my blue phone!" He will look at me and say, "Blue phone!" and I will hold it up for him to look at and then repeat the phrase.

"Can I cars, please?" He just said this a moment ago. He wanted to go play with his cars, but he doesn't always use verbs in his sentences, so we give him permission as we rephrase his question, "Yes Boo, you may go play with cars."

He knows all of his alphabet letters on sight and can put the alphabet in order when using manipulatives. He also knows his numbers by sight up to 19 and can count up to 49 now. He also rote spells his name, his sister's name, JoNo's name (well, an abbreviation of JoNo's name but says it as the full name), as well as Mom and Dad. He does get stuck when spelling Dad or just refuses to spells it.

His Magna Doodle Jr. is his best play toy. I keep that in his backpack at all times if possible. No matter where we are or what we are doing, I can almost always get him back on task (or at least out of a meltdown) by using this toy to practice letters or numbers. He also knows the sound that each letter makes. He will spend quite a while "reading" letters off of signs or walls or whatever he can find. He loves it! A while back, I was dropping him off at church and he sat down and started "reading" the wall. "J-E-S-U-S-L-O-V-E-S-Y-O-U" It's all just one big long word to him, although he does recognize the words as separate items when I am reading to him.

And that is Mr Boo in a (VERY large) nutshell. He is such a joy to have around and to experience life with. The world is such a different place from his prospective. I love seeing things from his point of view. ♥ ♥ ♥

I am also going to link this up to Company Girl Coffee and


  1. You know what may have helped him in the bowling incident could be something called proprioceptive input. Have you heard of it? My son thrives with this. It's a sensory input where pushing and pulling really help to CALM a child like this. It's part of a sensory diet for some children. The running around beforehand could help. Keep notes, mentally and written, to help you remember when he has good times and what happened in those circumstances and you will being to see a pattern of what can actually help calm and soothe him. Also...I TOTALLY wish blogging like this was around for me nearly 10 years ago because it's great to have it written down - I have nothing written down about my feelings and I have to really think back hard about how I felt as a mom! Great job!!

    Becky B.
    Organizing Made Fun

  2. Thanks Becky! I haven't heard of that technique before. But I can see where it would make sense and where something like that would help. Will definitely have to research it.

    I love blogging and the connections and the networking available. I didn't start blogging until about five years ago (give or take) and even then, it wasn't what it is now, with the connections and resources and all of those things!

    So glad to have you stop by and follow as well! Love having new followers!

  3. Wow, you've been through a lot of work with him... so glad you get to celebrate these moments now!

    While not the same, I can relate.... my son had developmental disabilities as a result of being 10 weeks premature. We went to weekly therapy (speech, occupational, and physical) for a year and a half. He tested as borderline autistic, but, after all the therapies, he was "caught up" and age-appropriate. Probably one of the best moments of my life was this past fall at his preschool conference when his teacher told us he was ahead of the class in many areas... she had no idea about his prior struggles. I got all teary-eyed and had to explain to her just how far he's come.

  4. OH-- me again! I forgot to tell you that I literally LOLed at your comment about me posting on a Friday... it is rare! :) I really want to post more than once a week but with all this crazy overtime I'm working I just haven't been able to do it.

  5. Oh wow! That is so awesome about your son! ♥ When Boo had his first MDT evaluation, they were saying that one of the things they were hoping for was that by the time he entered kindergarten, he would be fully mainstream and no in need of an IEP at all. While he is mostly mainstream now, he still has his special needs.

    The school system is changing the cut-off date for entering kindergarten. It is currently age 5 by October 15, but will be age 5 by July 15 (I believe). So he will end up having three years of preschool - the year he turned 3, the year he turns 4, and then the year he turns 5. He will start Kindergarten when he is 5, almost 6. Same as we did with JoNo. They're birthdays are 5 days apart.

    Anyhow, all that to say that with 3 years worth of his preschool program and therapies he receives as part of it, I think it's a possibility that we may be able to have a similar story, with him being "caught up".

    On the other hand, he is so much more advanced in some areas that even Punky is. She doesn't know ALL of her letters and letter sounds and a few other things like that. It is such an experience to have two children so close in age, yet so very very different! Love it! ♥ ♥

  6. Hi, Deanne. I was hoping to eliminate some of your confusion about the PDD-NOS diagnosis. Autism is classified under the umbrella term PDD. PDD-NOS just means that your kid didn't quite fit into the perfect little diagnostic boxes of classic autism or Asperger Syndrome, but still had enough symptoms to qualify as being on the autism spectrum. PDD-NOS is truly a form of autism.

    Sounds like you are doing a great job and learning a lot with your little guy. It's hard work, isn't it? I have 2 boys diagnosed on the autism spectrum myself (both with PDD-NOS). I also run a support group and work with families who have kiddos with autism. If you ever want to chat, feel free to pop over to my blog and then click on the link to my email address listed under my profile. :-)

    Take care,
    Angela (aka Caffeinated Autism Mom)

  7. Thanks Angela! When they gave him his educational diagnosis, it was in his MDT report and that was it. No further explanation and I kept getting conflicting information but with the idea that ASD is the umbrella and that PDD-NOS was under that umbrella but not quite...or something like that. Totally confusing! lol It's a learning experience that is for sure!

    I really appreciate you stopping by and clearing that all up for me. I will come by and check out your blog as well. I tell you, the ability to connect with other moms and network and gain information is just wonderful! Thanks so much for your clear explanation. We have been at this since May 2009 and I'm still so confused about it all!