Post IEP meeting blues

I am currently remembering Doctor Nobel's advice when Finn was diagnosed in 2014 that the Autism journey is a steep, steep staircase.  Not an escalator.

Finn has made tremendous progress in therapy.  I am grateful that he has mastered so many short-term goals.  He has gone from a largely nonverbal kiddo who could not understand enough language to respond to simple commands that are important for safety like "stop," "stay," "come here," ect., to being able to understand multi-step, sentence-length instructions.   He has a lot of memorized "scripted" speech, and conversational speech is still very hard for him.  The other day his uncle asked "how are you doing?"  And Finn was so excited to try to talk to him he excitedly responded, "I am doing, oh gosh, Robby, then play time want to check it out, and then some something else." Did it make sense?  Not really.  But it sure was cute to hear my boy trying so hard to be conversational.  It's a step.  He want's so hard to be able to communicate, but still lacks a lot of skill.  It's still very unnatural and foreign for him.

Then again a year ago that question would have gotten you a blank stare, at the most.  One more step.

I remind myself daily what a miracle it is to hear words from this boy. There was a time when I wasn't sure if the future would hold speech for Finn, and I am not immune to the fact that many momma's to kiddos on the spectrum will never get to hear their children's voice.

It is such a blessing that he has the ability to talk in age-appropriate sentences and that most times he can communicate his needs, (assuming he is not anxious or overstimulated).  He can also make eye contact when his name is called, when in the past he could only look at a person from the corner of his eye.  We have expanded his diet significantly.  I could go on and on all day about progress we have made, but it would get boring fast.

Because of the tremendous progress we have made, I have been feeling pretty confident that my goal of mainstreaming him in kindergarten without an aide is more than on track, a goal that has been encouraged by his therapy team at The Homestead.

Honestly, it's been the great silent looming goal that I have had since diagnosis that Finn would have two years of ABA, and then he would be functioning like peers and be able to lead an independent life by kindergarten.  If I did my job right as a parent, that would be the end result.

And, then his IEP meeting today.  I found out that my sweet boy who made so much progress last year in preschool has really been struggling in his new, much bigger class.  There isn't really any day-to-day communication with his teachers or staff like a receive with his therapists, so until IEP meetings four times a year I do not get to fully comprehend how he is doing in school.  His teacher opined that he will need more support in the way of a full time 1:1 aide for kindergarten.

I didn't know how much my sweet boy was struggling with the extra stimuli, noise, and new kids (and less 1:1 instruction from his shared aide as a result).  He's been anxious and overstimulated.  He's been velcro on his teacher's knees begging for hug after hug (one of his coping skills to replace behavior like banging his head or biting himself, again, another step).   I feel like I was kicked in the gut a bit when I realized he wasn't doing as well as I thought he was doing this whole time.  It made me second guess myself if I've done the right thing by putting him in a traditional classroom instead of a special needs classroom.  I do not wish my little boy's life to be such a daily, hard struggle.

For a minute anyways.  Then I remember that while struggle is hard, it is also necessary for growth.

Finn got used to his class of 10 last year, up from his class of previous contained classroom of six, and he will get used to his class of 17 before it goes up to 20 something in kindergarten.  These are necessary steps in our proverbial staircase.  We are working on group skills in therapy right now, so we will add in some of the things that he is struggling in at school, like waiting, coping skills, sharing, turn taking.  I think focusing on group skills will help, and we have a year to make progress.

So, we don't get to coast.  We are never going to get to coast.  My son's whole childhood has been an uphill battle of learning to overcome his communication, social, and sensory difficulties.  We have learned how he learns, and we have learned to cope.  I think if we could look down our figurative staircase at where we've been, how far we have come, the height would be staggering.

If he needs a 1:1 aide in kindergarten to comprehend, and learn and focus, then that is what he needs.   Ultimately, the goal is middle school, high school and college.  Class size is going to continue to go up and up and up, and my son is going to have to learn to cope in order to truly succeed at learning, and to prepare him for an independent life.  There are people out there.  And they all make noise.  That's not going to change if I hide him in a small, insular class that is safer and easier for him.  He could live in a bubble, but he isn't going to thrive in one.

Ultimately, my goals for Finn are not important.  The imaginary timeline that has been in my head is unimportant.

The only thing that is important is that he is able to learn as much as he is capable of and if he needs an aide to accomplish that, then that is what we will need to do, for as long as we need to do it.

Faux family update

It's been six months since my last post.  So much has happened, I am not even sure where to start.

I guess we will start with the fact that my teeny baby turned one! We just had a small celebration at our house.

At one Addy is starting to get sassy.  She loves to run on her tip toes, imitate her brother, and love on her Daddy.  She doesn't know very much language yet, but is very vocal anyways and can manage to still get what she wants most of the time.   I call her socially aggressive.  She yells hi at everyone she comes in contact with, and will continue to yell until they acknowledge her existence and cuteness.  And she will get right down in your face to make sure she has your full attention.  She sure is adorable, and very, very loved. 

Finn also had a Birthday! He turned 4! We also just had a small party at the house for him with a blue's clues theme. I made up some handy dandy notebook and we played blues clues, and then made some rock candy.

At four, Finn loves being outside - especially in water, running, reading, playing with cars and playing with friends and cousins.  He is sad that we are on summer break, is talking about his classmates, and asking to go back to school.  He is doing so well with therapy, that we are in the process of trying to reduce his hours for therapy at this time.  My plan is to continue to wean him down, until he is hopefully free of needing any outside therapy by the time he enters kindergarten. 

We also got family Photos.  I love the photos of the kids!  The family ones aren't my favorite, because I look really fat, and Colin looks really unhappy.  He hasn't been happy for awhile.  He tried to tell me, but I didn't really take him very seriously because I was happy within our marriage,  so I assumed we were fine.  Denial is never actually a helpful coping mechanism, in case you are wondering.  He recently considered leaving me, but ultimately decided to stay and work stuff out.  We have been going to therapy, but I am not sure it has helped us as much as we have helped ourselves with working on open daily communication at home.

Hopefully, by next year 's family photos his smile will be a genuine one, and I will be a whole lot thinner. :)

I have been trying to focus on self care lately. Eating right, exercising and listening to music.  I would still like to lose another 20 pounds, but I have shaved the first 20 pounds off my goal and that feels good. 

And, photo dump of the kids looking cute and enjoying summer. 

I really do intend to update more frequently, but as I keep saying that, we will see if I follow through.  I am going to be going back to school now that the kids are more self sufficient and I am going to try to shove the six more classes I have into the next six months, then hopefully I will be done.  I am likely not going to go on to get my masters or try to change careers in my life at this point.  I am going to just focus on my marriage, myself, my children and being the best nurse I can be. 

December Part two: Florida and Christmas.

We had one full day back in Des Moines, long enough for us to take a breather and for me to unpack and repack a suitcase for our plane trip to Saint Petersburg Florida to attend memorial services for my grandmother.  I lived with my grandmother from the age of 1-4 and then 8-11 or 12, and then again when I was 15 or 16 until I moved out when I was 21 to move to Iowa to go to nursing school.  So, the majority of my childhood.  I loved her, and I felt very awful that my brother and I were planning to rent a camper and drive down with all of our kids to meet her, and we didn't make it in time.  I would have liked her to be able to meet her granddaughter, because I know that she would love her.  However, someone told me afterwards that now my grandmother can see her all of the time. I hope that is true. 

We went to an indoor playground with Finn's cousin Robby.  He loved Robby!  I tried really hard to get a picture of them together, but they were too active and fast so all of my photos were blurry snapshots of the back of their heads.  Finn keeps requesting Robby by name.  This is very special because while he often requests to "play with friends," or "I want cousins," Robby is the first peer he has ever requested by name.  We are hopeful that Robby will be able to visit us in Iowa sometime. It was nice to be able to hang out with my Brother who I don't get to spend that much time with now that we are grown ups with kids and spouses and jobs, and our cousins whom we haven't seen in almost 10 years!

Very Often, my Adeline thinks she is bigger than she is.  She loves to climb things and explore.

We were lucky enough to be able to stay at my aunt Carolyn's house.  Which was nice because I had missed two weeks of work, had two unexpected trips and wasn't exactly flush with cash.  I also didn't have to pay for carseats or a rental car, because I accidentally let my license expire and didn't realize it until the car rental attendant kindly pointed the fact out, followed by the fact that I couldn't take one of their cars without a valid license. So, my brother rented car seats for an insane amount of money (honestly I should have just bought a couple new ones), and then refused to let me pay him back.  I tried to pay for them myself, but they wouldn't let me use a card in my name, because it was different then the name the reservation was under.  Ummph.  I ended up using the extra money to buy extra gifts, including Nerf guns for all of us, and we had a holiday Nerf gun fight when we got back to Des Moines.

 We, unexpectedly were able to spend time at the beach.  We weren't packed to go to the beach, because I grew up in Florida and don't ever remember going to the beach at christmas time.  It was in the 80s, with a water temp in the 70s, and feels like temps into the 90s! I had "sweater weather" packed and had to make a run to Target to look for swim shorts.  However, even the target in florida doesn't sell swim shorts....or any shorts for that matter, in December.  So we settled for a thin pair of pants, and a short sleeved shirt.

Finn would have lived in the ocean for the rest of his life if we had let him.

Finnigan absolutely loved the beach.  I wasn't sure, with all the stimuli; the feel of the sand, the wind, the sound of the waves, that he wouldn't have a giant meltdown, but he didn't.  He just took it all in.  Adeline though?  Meltdown. She hated all of it. She refused to go into the water, was scared of the birds and the sand, and she's usually very laid back and mellow.  Just shows you that you never know.  The birds even attacked us while we ate our sandwich under our rented canopy, and bit Finn in the finger while stealing one of his chips, but he still enjoyed the day.

Instagrams:

 This was a pretty big hit at my family's christmas party.  It's just butter puff corn drizzled in almond bark. It was very addicting, it's called "crack corn."

It was nice to be home, and to be able to get ready for christmas.  Colin missed his kids so much, he put a swim diaper on Addy's head...because why not I guess.

I didn't get a lot of pictures this year of Christmas because I was trying to engage Finn and make it really fun for him.  Finn got a train table, and a hot wheels race track.  Addy got an activity cube and a ball pit.  That Finn immediately pummeled until it died.  Finn really got the hang of christmas last year.  We read a lot of christmas stories, watched christmas movies and sang christmas songs.  There was an advent calendar along with the hide and seek elf game.  We read stories of the birth of baby Jesus, and Finn absolutely loved decorating.  Other years didn't go as well as this year, so I was grateful for our progress, and a very good christmas day.  There was some fighting over christmas toys, and they both needed a nap in between morning christmas and going to their grandparents, but I feel like that is pretty typical. By the time we got to his grandparents house, Finn was begging to "open presents," and telling his dad and uncle to hurry up and come out so he could get the party started.