Starting Kindergarten

Today was a day I've looked forward to for years. It was Nate's first day of kindergarten. Let me explain. Back 3 1/2 years ago when Nate was diagnosed with autism it was so overwhelming. I couldn't think too far ahead about whether Nate would ever be able to have a job, graduate high school, or live on his own. The psychologist who diagnosed Nate suggested trying to focus on just a few years ahead. Work on trying to get Nate ready for a typical kindergarten classroom. So that's what we've done. All the ABA, OT, speech, music therapy, specialized preschool, IEP meetings, research, etc. has contributed to this goal. 

When we were starting to plan Nate's transition from preschool to kinder the plan was to have Nate in a typical class and also in a special ed class. We loved the special ed teacher and the school was great. We were excited for Nate, but it wasn't a fully integrated class which would have so many benefits for Nate. 

Well, at the final transition meeting of the year the plan changed. The school had enough incoming kindergarteners with autism to hire a special ed teacher to be in the typical kinder classroom. This meant Nate could now be with his peers all the time. No pull out for special ed. And that's really exciting for us. 

I'm so proud of all the hard work Nate's had to do to be ready for kindergarten. So today is definitely a day to celebrate all we've achieved.

PEP Conference

Shortly after moving to Colorado, I really felt like I needed some more support with this autism journey we're on.  I'm not the first person to go through this so there is no need for me to figure things out on my own.  So I joined a few support groups.  Some in person, some online.  I've made some friends and been able to get a lot of help.  One of the things that has kept coming up in multiple groups is the Parents Encouraging Parents (PEP) conference.  It's put on by the Colorado Department of Education and they really try as hard as they can to get parents there.  They pay for the hotel, the food, everything except your transportation and child care.  So many people I talked to said it was life-changing to go.  I talked Brad into going and signed us up.

This was our very first trip away from the kids.  It's a little hard leaving them, but I knew they were in good hands with Grandma and Auntie Lou there to take care of them.  And honestly Evy and Nate loved spending the time with them.

We spent 3 days up in Vail.  It was beautiful up in mountains.  We didn't have much time to get out and enjoy them since the conference was so busy, but we did get out a little bit to see the area and for a nice dinner out.

The PEP Conference was the best thing we've done for Nate and our family.  We learned so much and were so inspired.  They had so many educators, professionals, lawyers, and other parents there.  We learned so much about disability law, behavior strategies, caring for siblings, advocacy, how to choose a good school, writing an IEP, conflict management strategies, dealing with grief, transition planning, and so much more. My favorite people to hear from where the self-advocates.  It was amazing to hear how they would advocate for themselves, even at such a young age.  There were so many times me and Brad were moved to tears by the touching stories of trial and success.

Artwork from a self-advocate who taught himself to draw

We aren't able to go back for 5 years as parents, but if we want to come back has facilitators we can come back every year and I'm seriously considering it.  It was such a great weekend for Brad and I to get away and to learn so much to help our family.

Nate at 4

- Still the funniest kid I know.  He makes me laugh so much.
- Getting to be such a big helper.  He likes to help with sweeping up the floors, grabbing Evy's blanket for her, and cleaning up (well sometimes!)

- Nate works so hard.  I can't imagine having to do all he has to at his age.  There are so many therapy hours.  Literally, our only free day is Fridays.  He really does work so hard and actually enjoys a lot of it.
- Just for reference, Nate does 2 hours of speech, 2 hours of OT, 1 hour of ESDM, and 4 hours of ABA a week.  And goes to preschool for another 11 hours a week.  He's a busy boy!

- After a really rough period, Nate is getting a lot better at being nice to his sister.  One day, I had them sitting side by side in a cart at Costco.  Evy started crying and Nathan put his arm around her and said, "It's ok Evy."
- I've caught Nate doing his hair with potty water.  EWWWW!
- Nate knows all of his letters, upper and lower case. I'm pretty impressed because I did not teach them to him at all.

- He's pretty good at counting too.  But my favorite has to be when he makes a mistake and calls 11, "Onie one" or 15, "Five teen" or 20 "Two-ty."
- I was reading "Pete the Cat and His 4 Groovy Buttons" to Nate at bedtime.  And Nate points to the buttons and says, "Thomas, Edward, Henry, Gordon!" For those of you who haven't watched one million hours of Thomas the Train, Thomas is #1, Edward is #2, Henry is #3, and Gordon is #4. Yes, my child counts in Thomas. I've caught him doing it a few different times.

- The things this kid says!  My favorite recently has been, "That's so awesome!" just like in The Incredibles with his hands in the air.
- Still loves his blue blankie.

- He has loved preschool this last year.  He likes riding the bus to school, he loves his teachers, and he's made some friends.  His nickname at preschool was "Mr. Responsibility" because he always made sure they followed the rules.  His teacher even sent me this picture one day of Nathan walking back into class from the playground holding hands with a little girl from his class.  His teacher said he had the cutest smile on his face while walking with her. Too cute!
- His favorite food has to be spaghetti.  He usually eats several plates which is a big deal when most meals he eats only a few bites.

- He's a little escape artist.  He learned how to open the dead bolt on our front door.  Luckily, you have to have a key in there to open it so we've just taken out the key.  But he knows how to open the sliding glass door to the backyard.  And how to open the side gate.  Which has now been zip-tied closed.
- Such a big fan of books.  He knows several books by heart.

- He loves his Duck, Duck, Moose jammies!
- He has such an amazing memory.  It astounds me.
- His 4 year stats are: 31.5 lbs (13th percentile) and 38.5 inches tall (14th percentile.)  He finally moved into 3T pants!

- Favorite things: space rangers (astronauts,) watching rocket launches with daddy, trains, letters and numbers, playing outside, riding his bike, and books.
- He has such a sweet little singing voice.  I love when he spontaneously starts singing.

Hooked up for his EEG

- While Nate has been doing so many incredible things, we have also been seeing a lot of things that have been worrying us.  Over the past several months we've had growing concerns about Nate's health and development.  We've been seeing a lot of periods of staring off.  You can talk to him and even touch him and he will not respond.  We've been told to be particularly vigilant for seizures since 1/3 of kids with autism will develop epilepsy sometime in their life.  While there are typical seizures, there are also absence seizures that quite literally look like the person has checked out and then they come back.  We were pretty scared that Nate might be having these kind of seizures.  Then started the crazy screaming tantrums.  I know Nate's just a little boy, but these were 30-90 minutes of screaming.  Like he was in pain.  Holding his head, sometimes curled up in a ball on the floor.  Nothing would stop them.  Nothing seemed to provoke them.  We think he might be having migraines.  Add to this Nate was getting progressively worse at sleeping through the night.  He'd wake up at 2, 3, 4 in the morning and could not get back to sleep.  For the next 2-4 hours.  So sometimes that meant he never went back to bed after waking up at 3.  He'd do this 5+ nights a week.  And if he did sleep he would be tossing and turning all night.  All of this was taking quite a toll on his development.  His preschool teachers were quite concerned.  Nate's skills started to plateau.  We added more therapy hours.  More things stopped progressing and in some areas he was actually starting to loose skills.  That scared me more than anything we've experienced. We went to see a lot of specialists during all of this.  A pulmonalogist for sleep, a developmental pediatrician for the developmental concerns, and a neurologist for the possible seizures and migraines.  Nate has lot of blood tests, a couple EEGs, and even a MRI.  And right now we're not really left with any specific cause.  Our neurologist warned us to be prepared that that might be the outcome of all this testing.  What we do know is it the EEGs have come back as normal so Nate is not having seizures.  His MRI was also normal so we don't have a cause for migraines.  His blood panels have all come back normal except that his iron level was low.  This low iron level was the cause of Nate's restless sleep.  It's taken months, but it's coming back up and Nate is sleeping better.  Way better.  And we've been trying an anti-migraine med for Nate. And amazingly he's doing so much better.  Maybe once a week instead of every other day.  And the side effects are that it makes Nate hungry and sleepy, which is a win-win in our book.  I'm really anxious to get him back in preschool in the fall and see how he does developmentally.  But we really are so grateful that he seems to be doing better in so many areas.
- Man, I love this kid.  He's so smart and funny and sweet and hardworking and I could go on and on. We really are lucky Nathan is in our family.

Sensory Friendly Santa

Normally, I wouldn't bring Nathan to see Santa.  The noise and the crowds is a recipe for Nathan to have a sensory meltdown.  It wouldn't be fun for anyone.

Nathan's occupation therapist let us know that the mall near us was offering a sensory friendly Santa this year.  They set up a special time for kids with autism and sensory processing disorders to come see Santa.

They really made visiting Santa autism-friendly.  They turned off the loud Christmas music and turned down the lights.  They had appointments set up so they could control how many people were there at a time.  They had a play table set up with beads, bubbles, slinkies, crayons and coloring books, I Spy bags, and glitter water bottles (all things kids with autism usually love.)  Nathan loved playing with all their toys.  I waited in line to see Santa while Nate got to play.  I think the best part was that all the parents there had a kid with special needs so if anything did happen it really wasn't a big deal.  I talked to a dad and mom in line with two boys (4 & 2) and it was fun chatting about life with autism.

Nathan actually loved visiting Santa.  It kinda surprised me because we really don't talk about Santa.  I did talk him up on the way to see Santa so maybe that got Nate really excited.  But we got up to the front of the line and Nathan said, "Santa Claus!"  He went right over and gave him a high 5 and a pound it turkey.  And he gave us the best grins for the camera.  Evy, not so much.  She was a little worried about being left with a stranger.  Nathan told Santa he wanted a Thomas for Christmas.

The whole event was put on by the Autism Society of Colorado.  One of the ladies who works there has been helping me figure out some insurance stuff and I've been calling her a lot.  She was at the event and so I introduced myself and Nathan.  She immediately gave me a big hug.  After we visited Santa, she came over and told me the news was coming to do a story on the event.  She asked me if I would be interviewed.  Since she has been helping me out so much I really couldn't say no.

So if you want to see Nathan on the news, here you go!

Preschool

I can hardly believe Nathan is old enough to go to preschool.  I wish he could still get at-home therapy, but it's how the system works to get him therapy.  The thing that helps me be ok with it is that he needs to be around his peers and that he loves it so much!

The best of first day pictures

His class has a unusual set up, but it works great. Nathan is in a small class of 6 students who are all autistic.  They have a special ed teacher, occupational therapist, speech therapist, and psychologist to work with Nathan individually on his goals.  Nathan's class is paired with another class of 10 typically developing kids.  Nathan's class joins them at least for snack and recess, but as Nathan is able to he will join in with the typical classroom for more activities. They have several para-professionals in the typical classroom to help out the special needs kids if they need a little extra support.  In total, there are 9 professionals working in the 2 classrooms.  I'm really happy with the classroom Nathan is in.  From all the research I've done on the effectiveness of preschool classrooms, the ones that mix autistic kids and typically developing kids have the best outcomes.

Preschool open house

They did a great job getting the kids ready for preschool.  First, Nathan's teacher, occupational therapist, and speech therapist all came to our house to meet Nathan and so we could talk about Nathan.  Nathan was so happy meet all of them and was very friendly.  They also had a preschool open house so mom and Nathan could go see the classroom and meet all the staff before preschool actually started.  Nathan was so eager to go see everything.  He colored his snack mat, stood for pictures, and explored the classrooms.  Of course he found the trains right away!

On his first day, Nathan did great.  When I was driving him to preschool, I was talking to him about preschool and he said, "Preschool.  Bus."  I was so happy with him for  making the connection!  He will get to ride the bus to preschool very soon.  Once we got in the building he couldn't wait for me to sign in so he could go into class.  He went right in and didn't even care if I was there.  I said goodbye and had to get him to stop playing for him to say goodbye back.  It was so weird being at home without him.  I really started to miss my little buddy.  But Nathan's preschool teacher, knowing it was probably going to be hard sending him to preschool, sent me some cute pictures and let me know he was having lots of fun at singing time and reading time.

Nathan was happy to see me at pick up.  He would not stop talking about "preschool teacher" afterwards.  He can say all of his teachers names except for his actual preschool teacher, Miss Melissa, but calls her "Aunt Alissa".

He is absolutely loving it! His teachers tell me all the time that he loves singing time.  And he's even made a little friend in his class.  There is another boy in Nathan's class that we see before they open the building to let the kids in.  I've been helping Nathan to go up and say hi to his friend Odin and Odin says hi back.  Well, this last Thursday Nathan ran up to a boy that looked like his friend and said, "Hi Odin," all on his own.

And to be completely honest, mommy is loving preschool too.  Evy gets a completely undisturbed nap and I get so much done.  And Nathan gets in a lot of therapy at preschool.  It's a win-win-win for everyone.

One Year with ASD

This last Friday marked one year from Nathan's autism diagnosis.  What a year it's been.  One thing that scared me when Nathan was diagnosed was not knowing what Nathan's life would be like.  Will he learn to talk? Will he be able to attend regular school?  Will he be able to create friendships?  Looking back now one year later, I couldn't have imagined the progress Nathan has made.  He can say words sponanteously.  He'll follow simple directions.  He's coming out of his shell and interacting more.  He's starting to put together sentences.  That blows me away.  They say that early intervention leads to the best results and from what I've seen with Nathan I'm a believer.  I have high hopes for this kid.

We're all different people after Nathan's diagnosis.  Nathan has obvious changes from all the therapy he's been doing.  But Brad and I are different parents because of Nathan and his autism.  With my background in child development I went into parenthood mindful of the kind of parent I wanted to be.  But that has had to change.  I didn't want Nathan to have an over scheduled childhood and now he does 15 hours a week of therapy.  I didn't want to be a helicopter parent, but the more I engage in his world the more he come into ours.

In some ways it still hurts.  It hurts when I see kids younger than Nathan that can speak better than him.  I marvel sometimes to see parents have perfectly normal conversations with their kids and I yearn so much for a conversation like that with Nathan.  I would love for him to be able to tell me he's hungry or tired or frustrated.  I would love for him to tell me what he's interested in.  He struggles so much to be able to communicate with us and I wish it wasn't so hard for him.

We are stronger for this last year.  We've learned to push for what's best for Nathan.  I've had to fight our case worker to get Nathan's hours increased and to keep therapists.  I've educated myself on autism through books, websites, and workshops.  I've had to speak up and to have an opinion.  I've learned how to be the best advocate for Nathan I can be so that he can have what's best for him.  We've had our patience pushed farther and learned to listen more closely.

Every night this year when we've put Nathan to bed we've sang to him, "I Am a Child of God." The second verse in particular touches close to my heart.

I am a child of God,

And so my needs are great;

Help me to understand his words

Before it grows to late.
Lead me, guide me, walk beside me,
Help me find the way.
Teach me all that I must do
To live with him someday.

While Nathan does have a lot of needs, I feel so blessed to have him in our lives.  We've known from the beginning that Nathan was a special little boy and that Heavenly Father wanted him in our family.  I feel such a responsibility to help him understand and learn.  That responsibility motivates me every day to keep going.

I was recently reading "Man's Search for Meaning" by Viktor Frankl.  Frankl quoted a patient of his who had a son with severe disabilities.  She answered his question as to what the purpose of her life was by saying, "And so I have made a fuller life possible for him; I have made a better human being out of my son."  I may not know what Nathan's life will be like, if he'll be able to go to regular school or if he'll make friendships.  But if I have the goal that I can make a fuller life possible for him, to make him a better human being, than that is a worthwhile purpose for my life.

I have had one of my questions answered about Nathan's life.  When Nathan was first diagnosed with autism, I wondered if I would ever hear Nathan say, "I love you."  I've wanted to hear him say that more than anything else.  A few weeks ago we were once again putting Nathan to bed.  And for the first time Nathan told us, "I love you," on his own.  Brad, Nathan, Evelyn, and I were hugging at bedtime and Nathan just said it. And it made my heart want to burst.  This year has been hard.  Really hard.  But to hear, "I love you," from Nathan makes it all worth it.

Life Right Now

Brad's looking into residency programs which is so exciting.  And stressful.  And nerve racking.  But also totally awesome!  Brad has applied to lots of programs in Pennsylvania, Minnesota, Colorado, and Utah.  And he's already had 4 interviews which is great.  He's got several more lined up as well in the coming weeks.   In all he's had 7 offers for interviews! All of these residencies are in the match program.  Basically we rank our favorites, the programs list there favorite candidates, magic happens, and then we get told which program we will be going to.  We get no final say other than ranking our programs.  Crazy!

Nathan is doing awesome!  We just got his 6 month report from ABA and Nathan is now up to 140 spontaneous words which is awesome.  6 months ago Nathan only had maybe 10-15 words, most of them were imitative (we said them first and he repeated.)  He's also doing better with his sensory problems.  He does a lot better with different textures and he is eating a lot more because of his progress.  We also had Nathan's 6 month follow-up appointment at developmental pediatrics (where Nathan was diagnosed with autism.)  The nurse practitioner we saw was on the evaluation panel when Nathan was diagnosed and she was so pleased to see the progress that Nathan has made it the last few months.  She was so happy that we were able to get so many therapy hours through Early Intervention and she could see what a difference it has made for Nathan.

Nathan working hard at therapy

I have official made it into my third trimester.  Only 9 more weeks!  Which freaks me out a little bit with all I need to do to get ready.  And then I try to remind myself that 9 weeks is still 2 months and I have time.  I'm feeling good and still have energy which is great with trying to keep up with Nathan.

I've been in full on crafting mode for baby girl.  Quilt #1 is all pieced together and has been sent to Utah to be quilted.  I have this crazy idea that I want 2 quilts for baby girl (I couldn't decide on just one design and Nathan had 2 quilts,) but the second quilt is much more time intensive than the first.  But I'm really really excited about it so hopefully that will motivate me with all the hand appliqué I will be doing.  I just finished baby girl's mobile and I am seriously in love with it.  Love, love, love.  I also found some fabric online that is the perfect fabric for baby girl's nursery.  Two shades of pink, green, and yellow, the exact colors I wanted.  The fabric is from one of my favorite fabric designers.  I found it for 60% off and so I ordered enough to make crib sheets out of it.  I was beyond excited when I ordered the fabric, which Brad just didn't understand.  He looked at me like a was a little crazy.  I mean, it's designer fabric that is perfect for baby girl's nursery.  What's not to be excited about?   I'm also mostly done with a knitted blanket and partially through a baby bonnet to go with baby girl's blessing dress.  I think it's time I start completing a few projects.

Quilt 1

Quilt 2 - That's 120 individual "leaves" to be hand quilted.

Designer fabric for crib sheets

So that's life right now.  It's a little daunting to think how much life is going to change over the next couple of months.  Brad will have matched with a program and we'll be planning a move.  I'm looking into some new programs for Nathan that would start in the New Year.  And we'll have a new baby in February.  There are lots of exciting and wonderful things to come.

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.