Therapies and Progress

Hey Everyone!  We've been super busy since I last posted.  We have Xander's IFSP set up, he's started Occupational Therapy and Early Intervention, and we are finally getting into the groove of our new routine.

As of now, Xander's goals include learning how to communicate with talking and with sign language, interacting appropriately with toys and peers (AKA play with sister and don't put everything in his mouth like he does at this point), respond to his name when called, and walk appropriately holding someones hand.We set up for him to go to occupational therapy (OT) at the therapy center once a week and Early Intervention (EI) to come to the house once a week.  OT deals with his sensory disorder and EI deals with speech and sign language.

I won't lie.. the first couple weeks were rough.  Xander isn't used to strangers being all up in his business.  He is normally clingy to me anyway but this new therapy stuff made him over the top clingy.  He wouldn't engage with any of the therapies.  Mainly the first few visits were spend with him crying and clawing at my legs and me peeling him off my body.  He was stressed and confused and frustrated and it was hard on my mama heart.  We are coming up on the third week of therapies and he is making improvements with being more comfortable in the environment.  Today he had OT and he actually was trying to walk into the room before she even came and got him!  He played with his therapist and engaged happily with all the activities.  When he tried to get me to pick him up, I said no and redirected him, and instead of melting down like he had done in previous visits.. he just turned around and worked with the therapist.  I am so happy he is becoming more comfortable and hoping to see more and more progress with his sensory seeking behaviors.  Oh and SIDE NOTE.. Londyn LOVES OT 😂😂 She thoroughly enjoys playing with the cool toys, walking on the squishy mats, and being in everyone's business.  The therapist (who is a mom of triplets and totally GETS IT) is wonderful with Londyn and is happy to include her in everything.  Xander has early intervention later this week.  He still has trouble focusing during this therapy and I think it's because it is in his home environment and he feels more comfortable roaming around or doing what he wants to do. He gets frustrated and doesn't understand why he can't watch TV or play on his jungle gym and go outside as he pleases like usual.  He's like "UM lady this is my house, you can't come in here and make me sit and LEARN!" We aren't making much progress with speech or sign language but it's only been 2 visits so hopefully progress is coming soon!

Xander has made progress in other areas as well.  He is totally fine in the bath now and actually is able to take baths with Londyn.  He did much better during his haircut this time also and he is making small efforts to engage with Londyn (playing with her hair, laughing at her during dinner, etc.)

Speaking of Londyn.. let me tell you, this girl is basically already a teenager.  She speaks in full, clear sentences and is extremely self sufficient. She's walking/running/jumping everywhere and loves playing with her small toy animals.. usually making them slide down a slide or take naps 😆 "pretend play" is her jam.  She can say her ABCs, count to 10, knows all her body parts, and basically every kid song ever invented.  She is smart as a whip and has the attitude to boot. 

As you can see, these twins are STILL just as opposite as they can be.. always have been, always will be! I've always said, they make up the 2 opposite pieces of my whole heart 💓💓😍😍

 Xander with his hairstylist Stephanie! She's wonderful!!

 Beanie. Poptart. Pumpkin PJs in April.  = Teenager 😑

 Londyn practicing her letters and numbers at snacktime

 Working on putting appropriate things in his mouth.  Sensory Teether

 Xander and Londyn do bathtime

Xander and Londyn at a gymnastics class with Mimi

Evaluation Results

Today Xander's service coordinator came to go over his eval results and begin the process of setting up his IFSP. 

Honestly, Xander has made HUGE improvements over the last couple weeks that we were not expecting at all.  It seems like all of a sudden, he decided to respond to his name, listen when told to come or stop, parallel play with his sister, even sit down and play in the tub for over 10 minutes!! We are honestly blown away at everything he has started doing and our concerns about autism have decreased dramatically.  However, I didn't want to get into a situation of "false security" and think hes had these great weeks so quit worrying and accidentally not get him help when he needs it... if that makes sense.  So needless to say I have been confused with where we are and looking forward to getting a professional opinion.

Our service coordinator is AMAZING.  Talking to her was like talking to a friend.  She explained everything so perfectly, put me completely at ease, and the whole conversation was just easy and comfortable.  Basically, she said she does not think Xander has autism.. she believes he has a sensory processing disorder.  She said he seems to be a sensory seeker.. and described it as him having on a wetsuit. She said seekers need harder pressure and more touch.. like you would need if you had on a wetsuit (wouldn't be able to feel light touches with a wetsuit on).  She said this is why he enjoys being so rough, enjoys running/jumping/spinning/falling/being upside down. Why he enjoys playing with my hair and why he puts everything in his mouth.  Everything she explained about sensory kids was Xander EXACTLY.  It was insane.  So then she said kids with SPD (sensory processing disorder) are often late talkers because they simply can't focus enough to be able to mimic and attempt new sounds.  She described it as having an itch in the middle of your back that you can't reach, and someone trying to have a conversation with you.  Like you see their mouth moving and you are trying to listen but all you can really focus on is that itch and you won't be able to focus on much else until you get it scratched!! That's the issue with Xander.

So the plan now is to start him on the early intervention for speech as planned, but also get him into occupational therapy.  This will help us figure out how to meet his sensory needs so he is able to focus on speech.

I am so excited to finally have some concrete answers about what is going on with my little dude.  It all made soo much sense after she explained it and I know she is going to get him the exact help he needs.  The next step is completing the IFSP and setting up his weekly therapy schedule.  I will keep you all updated!!

Here is a picture of my baby boy playing in the tub where he used to have complete meltdowns.  The only thing we changed was making the water about 10 degrees cooler for him.  Obviously it made a world of difference and we are SO happy with his progress!!

Xander's Evaluation

So we just finished Xan Man's evaluation!  This evaluation was NOT to test for autism.  Basically it was to see if Xander would qualify for services, and which services that may be.  I knew for sure he would need speech therapy (duh.. he doesn't talk!) But other than that I was kind of going in blind. Overall it went... ok.

The evaluator came in and explained the process.  Basically if Xander wualified he would get an IFSP (individual family services plan) which is an IEP for toddlers (makes total sense to my teacher brain!!

The evaluation started out with her asking me a bunch of questions about what Xander does/doesn't do.  Can he walk? Can he feed himself? Does he follow 1 or 2 step directions? Can he differentiate between familiar/nonfamiliar people? Does he engage in play? Does he express different emotions? Can he express his needs/wants? Does he show appropriate separation anxiety? there were many more but those are the ones I remember.  Most of the questions were a "rarely" or "never" for Xander. 

Next, the evaluator started working with Xander.  This was a complete flop.  She would try showing him toys and doing some object permanence games with him and stuff.  At first he would not engage AT ALL.. he was just chasing after me and crying trying to get me to pick him up.  I decided to sit on the floor across from the evaluator with Xander on my lap.. basically holding him forcing him to engage with the evaluator.  When I did this, Xander actually did really well with the games and was able to complete almost all the tasks.  The one he failed miserably was when he was playing on the couch and she rang a bell from across the room.  She rang the bell multiple times and Xander didn't turn to look towards the noise not one time.  She also called his name several times and he never acknowledged her.  She said based on those 2 things alone he would qualify!

So in order to qualify for services, Xander would need to score below 25% in 2 areas or below 45% in one area.  She said she can't give me official results.. but off the record he definitely scored below 45 in speech and language structure.  She is extremely confident he will be getting speech and language services.

As she was leaving, I asked the evaluator if she thought he was strictly speech and language delayed or if she thought he might be autistic.  She said she didn't know.  But she said if we are concerned, we could get on the waiting list to have him officially tested at Vanderbilt for autism.  I told her our pediatrician said he couldn't be tested until after age 2 and she basically said that is untrue.  She did say this is a test that takes several hours and that the waiting list is 8 or 9 months.  But we can tell our services coordinator if we are interested in getting this test done for Xander and she will get us on the waiting list.

So there it is!  The next step is waiting for the service coordinator to call us to go over the results and get started on his IFSP.  We will map out some short and long term goals for Xander and decide how many/how often/ and which therapies he will get.

I'll let you all know when we get started on the next step!  Prayers for my sweet little dude.

Toddlerhood

Ok, who dropped the ball and forgot to tell me toddlers are CRAZY!! goodness!! So much has happened since their first birthday.  I feel like each day they are learning something new, doing something new, or getting in trouble for something new.  I'll catch you up as best I can with everything that's gone on.

Let's start with Londyn.  This girl has learned a new word about every 5 minutes.  She knows all her animals and the sounds they make, she knows most of her foods and pretty much all basic language.  Talking to her is literally like talking to a little adult.  She loves pretend play and spends majority of her day playing with her little plastic animals and pretending to feed her baby dolls.  She is still a huge daddy's girl and constantly asks for dada the whole time he is at work.  She is a very cautious walker.  She prefers knee walking and still doesn't like to walk without holding my finger (which gets very exhausting having to walk back and forth with her for hours while still trying to tend to Xander) she is just now starting to stand up by herself and walk unassisted.  It's not that she can't do it by herself because she definitely can, she is just super cautious and would rather have help!  All in all she is a perfectly healthy happy little girl who is meeting every milestone perfectly.

Now Xander.  First of all this boy is basically running everywhere now.  He can climb anything you put in front of him and just loves doing anything physical.  But here is what I wanted to talk to you guys about.  Around 13 months Will and I noticed something... different.. about Xander.  The first thing we noticed was that he would never respond to his name when you called him.  We thought maybe he was just tuning us out while watching wiggles.  Then we noticed he was falling behind Londyn socially.  Where Londyn started interacting with us and learning words and using other forms of communication to get her needs met (pointing, bringing us toys and books, looking at stuff we would point out to her, etc.) Xander just.. wasn't.  Londyn started interacting with the dog and trying to interact with Xander and Xander hadn't said any words yet, not even babbling, and he just wouldn't engage with anything or anyone. 

At their 15 month well check we brought up our concerns with the pediatrician.  He said we were right to be concerned but nothing would be done unless we still had concerns at the 18 month well check.  He said some kids have a huge burst between 15 and 18 months.. but my mom gut knew we would be having this conversation again.  Sure enough at 18 months Xander still isn't saying any words and not engaging in any kind of social interaction.  He is also beginning to have meltdowns.  He is prone to having meltdowns if he can't find me.  His favorite thing to do is be in my arms and he will hold me so tight and play with/chew on my hair (after doing some research I have found that Xander is a sensory seeker).  Since his 18 month well check, he has had 3 major meltdowns.  The first one was getting his haircut.  The other 2 were in the bath.  I firmly believe these meltdowns are because of sensory overload.  What I am trying to say is, at this point we believe Xander is on the Autism Spectrum.  The pediatrician said he will not be officially tested until age 2, but he is going to be evaluated by an early intervention team to determine which therapies we will be starting (speech, OT, PT, etc.) They will be coming to the house to evaluate him.  Right now I am playing phone tag with the evaluation team, but hopefully we can get something set up soon.  Until then I am researching, joining groups, and just trying to help my boy as much as possible while also tending to Londyn Mae.

The ride just keeps getting crazier friends!! I am so thankful I picked up on some of the red flags and Xander will be getting the earliest intervention possible.  I am thankful God chose me to be his mom.  I am thankful for my beautiful baby girl and the fact that she is already proving to be so sweet and nurturing. 

I will try to keep this blog more up to date and we move through the process of getting Xander evaluated and the whole process we have coming up. 

 Feeding her baby duck

 His favorite sensory activity- wrapping his arms and legs around me as tight as he can and playing with my ponytail as I squeeze him back.  He could stay like this for hours and will scream when I put him down.