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.  

Red, White, and Blue Boy