Welcome Fall

Maybe it's the slight chill to the mornings or that the trees have just started to turn, but it seems like fall is here.  And nothing welcomes autumn as much as picking apples and enjoying the beautiful trees.  So Nathan and I made the trip out to Styer Orchards to pick some apples. I was pleasantly surprised to find that they still had peaches this late.  Nathan and I loved wandering through the orchards and picking our peaches and apples.  Nathan even helped pick a few of each.

The orchards made me a little homesick.  I grew up with 8 fruit trees in my yard that our family would harvest and spend the fall canning together.  I continued the tradition by canning some of our goodies into homemade applesauce and canned peaches.

Our trip to the orchards did make me very excited for fall.  There are spectacular colors on the trees to enjoy, pumpkins to pick, and one little boy to play in the leaves with.  It's going to be a great autumn.

Nathan at 27 Months

I think it's about time to talk about this little buddy again. He's been so much fun and has been making so much progress with therapy.  It's been excited to see him learning and growing so much!
- He can say his name!!!!!!!!! I was shocked the first time he said it.  We were working on saying mommy and daddy by looking through some photos of us.  I'd ask him, "Who is this?" and he'd say daddy or mommy, but on one photo he said "Nate Nate!"  There was a therapist with us at the time so I asked, "You just heard that right?!?!"
- Learned how to say "Grawma" (grandma.)  It's probably the cutest word he says right now.
- Nathan has discovered the "Happy" song.  Once it is playing Nathan will run in a circle until the song is done, and then proceeded to say, "More more more happy!"  He would be quite content if I let it play on repeat all day long.

- He loves trains.  There have been big displays at Longwood Gardens and Morris Arboretum lately and he's loved watching them.
- He's getting pretty good about greeting us with mommy and daddy.  It's the best walking into his room after he's been asleep and getting a shout of "Mommy!" from him.
- We put him in tumbling class and I think he's going to love it.  Right now he's still getting used to the routine, all the people, and how loud it is.  It's definitely sensory overload for him at times.  I can tell he does like the actually tumbling part of class because whenever he tries something he gets the biggest smile on his face.  He loves doing forward rolls, walking on the balance beam, and crawling through tunnels.

- He crosses his ankles when he sits at his table sometimes.  It's so cute!
- He's starting to say some two word phrases which is awesome!
- Loves nursery.  If the door is open when we're walking there, he runs right in and doesn't even turn to say goodbye.
- Taking him shopping is a bit of a challenge.  He's happy for about 10 minutes in the cart, but then he cries and tries climbing out.  He doesn't care if I'm not right there to catch him (don't worry, I alway do.)  I've tried clipping him in, but this just leads to him screaming his head off and still squirming his way out.  I've found out that he likes to push the cart and won't stray away so this is how I usually take him shopping now.  I just have to hold onto the cart while I grab something or else he'll continue pushing the cart down the aisle.

- This kid loves doggies.  Oh I wish we could get him one right now, but one day he'll have one of his own.  For now, he takes his white doggie to bed with him every night.
- MEMO!  Nathan is a little bit obsessed with Nemo.  He has a bath toy that is an orange fish with yellow stripes and he will carry it around calling it Nemo.  For a while he was all about Cars, (he'd call it "wacecar!",) but he asks for Nemo all day long now.
- Much better at waving hi and goodbye.  Sometimes he won't wave goodbye, but after they are gone he will look up to wave and say bye.
- Foods he likes: apples, applesauce, SHAKE! (pediasure), ramen noodles, broccoli, chicken, and eggs.

- Finally will take bites of food!  Everything has had to be in bite size pieces or it ends up on the floor.  He'll now take bites of chips, pretzels, graham crackers, apple slices, pancakes, cucumber sticks, and bread.  He wouldn't take bites of ANYTHING 2 months ago.  That's a pretty big increase and we're so happy with his progress!
- There is a yellow care bear in the nursery for choir.  Nathan will not let it go when he is there.  So when I saw a yellow care bear at a yardsale, I bought it for him.  Best $1 I've ever spent.  He loves it.  He loves to carry it around and give it hugs.
- He can count to 10 and he knows most of his colors.

- Nathan's box.  It started as an Amazon box that I let him color in.  Then he started to climb in there with his blankie to get sensory input.  Then we added his stuffed animals to help increase the sensory stimulation he would get by being in the box.  It definitely helps him calm down and regroup when he's getting sensory overload.  It's a bit of a nuisance (it's big and ugly to have in our living room), but it helps him so much that I don't mind.
- Nathan will ask several times a day to color.  He'll sit and color for a good 15+ minutes on his own.
- He's so cute when he says stop.  He'll hold up his hand and shout stop.  He does it in the car, if he sees a stop sign, or if we're playing a game.

- His naps have gone crazy.  More often than not they are absent completely, but he is not ready to go from a 3 hour nap to no nap.  I've tried moving it back a little with mild success.  Hopefully he goes back to napping!
- His favorite number is 5.
- Nathan kept asking for a "turner" or something.  I couldn't figure out what he wanted and he kept repeating it. After a week it finally hit me.  He wanted a tunnel.  I asked him if he wanted a tunnel and he was so happy I finally understood him.  He now says it perfectly and will ask for tunnels for his cars, animals, and for himself.
- Can I just brag about this kid for a minute? Nathan is just plain awesome.  He works harder than any kid I know his age, but he loves therapy and hardly ever has a tantrum over the demands we put on him.  On our most crazy therapy day we'll have 5 hours with only a half hour break. But he does it with a smile on his face and wows us with the things he is learning to do.  I'm sure proud of him.

We Have Something to Tell You

"What?!?  Really!?!"

Nathan's going to be a big brother!  We're are so excited for our new little addition arriving early February.  For now my due date is February 4th.

I've been feeling pretty good.  I honestly can't complain after how bad Nathan's first trimester was.  With Nathan I got really sick with an infection that was like having food poisoning for a month at the peak of morning sickness.  This time around my only goal has been to not throw up while I had a therapist at home working with Nathan and I'm proud to say I accomplished my goal.  My only complaint is that morning sickness has lasted longer than it did with Nathan.  I'm still nauseous, but it's been getting better lately so hopefully it will go away completely.

And we can't wait to know if it's a boy or a girl. We could know as early as this Thursday when I go in for another OB appointment otherwise we'll probably know in about a month.  We're both hoping/feeling it's a girl, but we'd be very happy for Nathan to have a little brother as well.

We honestly couldn't be more happy to be having baby #2. We're a little nervous to see how Nathan does with the transition, but he loves babies so hopefully he'll be a great big brother.  It gives me butterflies to think we'll be a family of 4 in February, but we're excited for this new adventure.

Helicopter Museum

We had a free Saturday so we thought we should try something new.  We decided to go check out the American Helicopter Museum (#75).  We've got less than a year before Brad's done with dental school (well, at least this portion) and we still have quite a few things that we would like to do on our list.  The museum wasn't as grand as we thought it would be, but Nathan loved it.  They had several helicopters that you could climb in and play with the buttons.  The museum is also right next to the West Chester Airport so we got to watch the airplanes take off and land.  The museum did have some really cool helicopters that Brad got better pictures of so I'm sure he'll have a post with pictures some time soon.

Weekend Fun

Awhile back, Brad was busy studying for his Boards Part II and NERB exam.  We decided it would be best to give Brad some time home alone to study.  Well, my friend Kylie was home alone for the weekend while her husband was out of town.  We decided to hangout the for the weekend.  On Friday, we took our boys to the Philly Zoo.  Both of the boys loved it.  It was a pretty awesome day at the zoo.  All the animals were out to play.  Nathan got face to face with a lion and was chasing and roaring after him.  The monkeys and orangutans were swinging on their playground.  I've always wanted to see polar bears swimming and I finally got to see it!

On Saturday, we went out to Longwood Gardens.  The boys were very good for the excursion and loved pointing out water.  We also took Nathan and Russell to the Children's Garden.  The boys got soaked in all the fountains!  They loved it!  Good thing we both brought extra clothes for the boys to change into.

I'm glad we could spend our weekend with our friends.  I love seeing these two boys playing together.  And it looks like the solitary study time for Brad paid off.  He got the results for Boards Part II and he passed!

Good Things Right Now

This year for my New Year's Resolutions, I decided instead of a goal per se, I decided on an attribute that I would like to become better at.  And that attribute has been:

GRATITUDE

While the past few months have been emotional, busy, and at times stressful, this has been a great focus to me.  I've notice that there have been so many things to be grateful for in our lives. Some of those good things include:

- First off, thank you everyone who commented, messaged, and emailed me with words of love and encouragement.  I had that last post written for almost 2 months now and finally worked up the courage to post it.  So to have so many people reach out with love and friendship means a lot.  It's nice to know we're not alone.

- Both of our families have been great about supporting us.  The calls have meant a lot.  Thank you all of you wonderful people we are blessed to call family.

- Since we live so far away from family we have to rely on our friends out here.  Thank you to all our friends who have supported us and helped us through.

- Nathan's pediatrician is awesome! I couldn't be more impressed with her.  Not only did she drastically cut down on Nathan's wait time to get into CHOP, but she's done so much more.  Recommendation letters for therapy, calling therapists for us, writing letters with Nathan's possible diagnosis so that we can start therapy, emailing back and forth with me, and so much more.

- We're in Pennsylvania.  When our first year here was the pits, we were really wondering why we ended up in Philadelphia.  Now, we realize it's a blessing.  Nathan is getting top care at CHOP.  There's not a better place for us to be right now for options for diagnosis, treatment, therapy, and research opportunities than where we are now.

- I have a sister-in-law whose a pediatrician.  Whenever Alissa's noticed anything about Nathan she has been completely correct.  I fully credit Alissa with diagnosing Nathan's torticollis when our old pediatrician was completely missing it.  I fully trust Alissa's doctor's instincts.  Alissa's been great to be a sounding board for my concerns about Nathan and to ask what she is seeing and noticing with him.  Alissa's been great to call to me to see how things are going medically, as well as seeing how we are doing emotionally.  These calls have meant so much to me when we really weren't talking to a lot of people about what was going on with Nathan.  She just got it.  Thank you Alissa.

- My wonderful friend Shawna.  For being a good enough friend to cry with me when I was so upset by Nathan's diagnosis.  For always asking how I was doing and letting me be honest.

- When I thought about all the people I knew and realized I didn't know another person who had a child with autism I felt pretty alone.  I do have a wonderful friend Jen who has a daughter with cerebral palsy.  Jen's done a lot of work on her daughter's speech and advocating for therapies for her. So I called her.  And it was one of the best conversations I had while we were still wondering about Nathan's diagnosis and treatment.  While her daughter has CP, she does most of her therapy with kids who have autism so Jen had so much advice.  And beyond the advice, the emotional support of someone who has a child with special needs is someone I need in my corner right now.

- After I learned Nathan might have autism, I started looking for workshops and conferences to educate me on autism.  And the week after I first talked with our pediatrician about Nathan having autism there was a free class on ABA therapy offered through Early Intervention.

- There was a workshop for families of children newly diagnosed with autism that I really wanted to go to.  The only problem was that I would be gone all day long.  8 am to 5 pm.  But my friend Annalisa watched him all day long.  She even watched him at our house so he would be more comfortable.

- Since we're working with Early Intervention we get 95% of our therapy at home.  This cuts down on a lot of the stress I had about how therapy was going to work.

- Another great thing about Early Intervention: we don't pay for any of Nathan's therapy services at home.  They're all free.  Since ABA in particular is so intense, it is also very expensive.  A year's worth of ABA would cost us $70,000 without insurance.  Our primary would have only paid 80% of those therapy costs if we would have gone the private route.  Luckily we also have a secondary insurance that will cover a lot of the remaining balance when Nathan phases out of Early Intervention when he turns 3.

- Nathan loves therapy.  He is so happy to see his therapists.  He's learned by now that when the doorbell rings it's someone to see him and he gets so excited.  He's usually happy during the sessions and loves having so much attention on him.

- I love our therapy team.  Our special instructor has been working with Nathan since January and she is just so knowledgeable.  She's helped me figure out my rights as a parent and how I can get services for Nathan through Early Intervention.  I LOVE the team leader for ABA.  When I first met Julie, I knew she would be an awesome advocate for Nathan.  She's had so much experience in the field of ABA that I love that she brings a bunch of different ABA styles to the table to make a more fitting experience for Nathan.  Our speech therapist specifically works with kids with autism and has brought a lot of unique perspectives to therapy.  She was the first to start a picture system with Nathan which he loves.  The occupational therapist was recommended by our speech therapist.  Our first appointment with her, she started getting teary-eyed at seeing how much I was advocating for Nathan and how involved I was in Nathan's therapy and educating myself.  Since she saw I was super involved, she was even more committed to helping our family.  If I ask her about any sensory need with Nathan, she gives me back so much information, activities, and games so that I can help Nathan.

- Nathan's last IFSP (Individualized Family Service Plan) meeting was awesome!  An IFSP meeting is where all of our therapists, caseworkers, and us as parents sit down to discuss how Nathan's doing, what we can do to help him, and what we will change going forward.  Nathan helped me make some muffins for our team to say thank you, which our therapists all thought was so wonderful of Nathan.  It was so nice to sit and thank them all for the hard work they are doing for Nathan.  Nathan would not be making as much progress as he is without them.  This meeting is also when we determine how many hours of therapy Nathan will get.  I was able to convince our case worker to increase our hours of occupational therapy.  Nathan's low weight is also related to some food sensitivities so our pediatrician was really hoping for us to do more OT to help.  We are now doing OT 1 hr every week instead of every other week.

- I'm really glad I worked for Head Start.  I didn't get to work with Early Intervention (they only work with kids 0-3), but I did get to help with the IEP (Individual Education Plan - i.e. the program Nathan transitions to once he turns 3) process a few times.  We had a couple of awesome disability specialists on our team at Head Start and they trained all the family advocates on the IEP process and parent rights.  The IFSP process and the IEP process are very similar and the parent rights are the same.  I went into Early Intervention with Nathan knowing a lot more than most parents.

- The best thing of all is to see how great Nathan is doing.  He's doing so awesome!  For example, Nathan started with about 10 words he would say (most in imitation of us saying it first, very few he would say on his own.)  ABA writes down every word he says during a session.  About 2 weeks ago ABA decided to stop recorded Nathan's imitative words because he is imitating so much they didn't have room to record all of his words.  We only record the words he says spontaneously now.  He's making such big improvements that it's amazing to see how much a difference all the therapy is doing.

This funny little guy is the best part of my day

So all in all, life is actually good.  Nathan's is progressing so much and we're so lucky to be his parents.  Yes, there are hard days or things that make me sad, but there has been so much good, that we feel very blessed.

The Elephant in the Room

I went to a playgroup this last week with Nathan.  It's been probably about a month since I made it to one.  I had a friend ask me, "Where have you been?  I feel like I haven't seen you in a long time."  I gave a pretty nondescript answer.  Busy life, you know.  But to be honest, we haven't really felt like sharing what's been going on in our day to day lives yet.  We've been trying to adjust and find what felt right to us before we let people know.  But it's starting to get a little harder not having people know which seems to let us know it may be time.

So, here we go.  Nathan was diagnosed with autism spectrum disorder.  And since this has become a big part of lives now, we simply can't go around not talking about it anymore.

I started getting a little concerned about Nathan's development when he was about 7 months old.  I noticed Nathan was super quiet.  He wasn't babbling near as much as he should have been.  He would wake up from his naps and wouldn't say a thing to let me know he was up.  I had set up an evaluation with Early Intervention (EI) for Nathan's tortacollis.  When EI does their evaluation they do a comprehensive evaluation.  I mentioned I was concerned about his speech.  When they tested him he was 2 months behind on his speech.  You had to be 3 months behind to qualify.  Friends, therapists, and even our pediatrician said maybe he will just be quiet and then one day he'd just pick it right up.  I was still worried.

We switched pediatricians and I meet with a new doctor that several friends recommended.  Right from our first appointment I felt so much more confident in the responses I was getting from our pediatrician.  You have a concern about this?  Let's get a test to confirm.  You think you're son is struggling with this? Here's some suggestions on how to help him.  Our new doctor wasn't going to push our concerns to the side and "wait and see."

Nathan still wasn't talking much.  He really only had a couple of words.  It's was really hard to get him to follow simple directions.  He didn't respond to his name.  He wasn't pointing at things like other kids his age were.

When we went in for our 18 month check-up our doctor did a developmental screening that happens for all 18 month olds.  I was answering no to a lot of questions that should have been yeses.  The pediatrician decided she wanted to follow-up with us in 3 months (not a typical well visit) to see how Nathan's speech was progressing.  I walked out with a referral for speech therapy and was told to call EI again to set up another evaluation.

I started speech therapy at the same place where we were going for Nathan's physical therapy for torticollis.  Since we had both therapies to do and our insurance wouldn't pay for both if they were on the same day I was making bi-weekly trips to the therapists' office.  Early Intervention also came out and did another comprehensive evaluation.  Nathan was behind in both receptive and expressive language and had delays in social/emotional development.  We started with a special instructor to cover both language and social development for one hour a week.

Our 3 month follow-up with our pediatrician came up.  Things were ever so slowly getting better, but not fast enough for the pediatrician.  Our pediatrician recommended getting Nathan tested for autism spectrum disorder.  It came as a bit of a shock.  There had been things that I had noticed Nathan doing that I thought to myself, "I should keep an eye out for that," since I knew they were signs for autism, but I wasn't too concerned because I was thinking, "Oh, at least I'm not seeing him doing _____."  The pediatrician sent me home with a long list of to dos, but she also sent me home knowing that she was going to support us through this process.

I went home and got right on it.  Our pediatrician recommended getting Nathan seen by a developmental pediatrician at the Children's Hospital of Philadelphia (CHOP.)  They're one of the best in research and care for autism so we felt very confident that we would be in good hands there.  I called CHOP that day to get Nathan in to see a developmental pediatrician.  The receptionist explained that to get an appointment they would first send out a 12 page questionnaire about Nathan's development, I would fill it out, mail it back in, and after they reviewed the application they would send me a letter with how long my wait time would be.  They told me that the wait time for a 21 month old was 9-12 months.  MONTHS!  It could take up to a year to get him a diagnosis. I was shocked.  Our pediatrician had told me it is a long wait period to get in with CHOP, but she would like to get Nathan seen in 2-3 months.  Since she knew the clinic coordinator she asked that I let her know as soon as my application was in so she could help get us in sooner.  I sent in the application as fast as I could and let my pediatrician know.

I need to take a moment and just say how AWESOME, WONDERFUL, and  HELPFUL our pediatrician has been through this process.  She kept asking me if I had heard anything from developmental peds and if I hadn't she would email them.  Every week until we got in.  And because of our pediatrician Nathan got seen in just under a month from when I mailed in his application.

The big day arrived for Nathan's developmental evaluation.  We both went in with the mindset that Nathan probably has autism, but we were still anxious.  They usually make a diagnosis with 2 appointments, one for the evaluation and one for follow-up (2 weeks later) when the diagnosis is given.  If the evaluation went quickly enough they would give us the diagnosis the same day.  I really was hoping for this so I didn't have to agonize for weeks and we could move forward with our lives.  The evaluation went really well.  Nathan acted liked usual, which we really were hoping for so they could have an accurate picture of what Nathan is like.  We had a speech therapist and a nurse practitioner running the evaluation and there was a developmental pediatrician who was watching behind a 2 way mirror and recording the session.  It only took 1 hour of our 2 hour appointment for the evaluation.  The team excused themselves for about 20 minutes to talk privately about their observations and diagnose Nathan.  Those minutes seemed forever.

Once they were back they didn't say right away that Nathan has autism.  They carefully went over each test, their observations, and where Nathan was developmentally.  After looking at the all the information, the developmental pediatrician was confident in her diagnosis that Nathan has autism spectrum disorder.  He's somewhere on the mild to moderate range.  More specifically his development is that of a 12 month old.  Of all the information that day, this was the most shocking.  I had expected that if Nathan had autism it would be mild.  He had started talking (even if it was just a few words) on his own and he didn't have a lot of severe symptoms.  But to hear that Nathan was almost a year behind in his development, that was hard.  I was not prepared for that.  The specialists took the time to answer our questions, offer us lots of advice, and give us resources.

Now is the time to start therapy and lots of it.  We currently are doing 10 hours of Applied Behavior Analysis (ABA), 2 hours of speech therapy, and 1 hour of special instruction every week.  We also have 1 hour of occupational therapy every other week for Nathan's sensory needs. Nathan's morning hours are completely consumed with therapy and then he goes for nap time during the afternoon (he still takes a 3 hour nap.)  Then it's dinner time, daddy time, bath time, and bed time.  His schedule is completely booked!  We might occasionally have part of a Thursday morning off for doctor's visits or playgroup.

That's the elephant in the room.  Some days I'm okay and some days it's not ok.  The best thing right now is that Nathan is still himself.  He doesn't realize that anything is different and so he's still his happy, silly, and funny self.  I can't get too sad when I have him around.  He's loving therapy.  Honestly, he's doing so great with all of it.  There's a lot to be grateful for and highest on that list, is that I still get to be mommy to the happiest and funniest toddler I know.