Monday, May 22, 2017

National Apraxia Awareness Day

May 14th was national Apraxia day, I am a few days behind!! I wrote about what it is like for a child to have Apraxia and how their brain knows what they want to say but there is a disconnect to the mouth and other extremities. You can check out my original post here.

Our family has learned so much through this journey that I thought I'd share a few things that work for us and that I have learned!
YOU NEED A TEAM
For both you and your child!

You need a team behind you who shares in your joy, fears and excitement! You need a team of people who not only support your child but also support the whole family. Giving you hope when you don't see any.

When our daughter was in the birth to three-year-old program, that our state provides for free, we would show up to IEPs and there would be NOTHING written in the strengths section (stretch it, even make something up I don't care, but do not show up at an IEP with nothing written)!  At that point, I shut down on them and told myself it just another means of exposure but nothing more. This wasn't therapy, a therapist can ALWAYS give strengths of a child! The notes that came home were worse! They would start with what she can't do! I'm her mom, I know what she can't do! Tell me what you worked on and what she CAN do!  What made it more frustrating to me is that they knew I was an Early Childhood Special Education teacher for 10 years! They should be putting on a nice show for me but if this was what their show was I worried what other kids were getting.

THE TEAM WE HAVE NOW
They are amazing!! We see a private speech therapist, speech and language preschool, occupational therapist and a psychologist.
Waiting patiently for Mrs. Dawn our speech therapist

Speech Therapist
We made the choice to have our daughter seen by a private speech therapist, which just means that it isn't connected to the school system. We see her once a week for 1 hour. She is wonderful! Our daughter loves going to see her and we spend the entire hour playing, which elicits more speech for my daughter! She is a mover and sitting at the table for an hour going through flash cards would be torture. During each visit the therapist will ask how are things, any new skills, and always can tell when I need a little pick me up! She is amazing for me but also cries when our daughter does something amazing!
Sometimes I have to shut the door because she is so eager to go in! This is when you know you found the right person!! 

How awesome is our therapist! She has two things Alli loves! Donuts an Minnie while working on prepositions! 

Psychologist 
Due to our daughter’s lack of speech her social skills are delayed as well. Once she realized she couldn't keep up with the kiddos maybe a year and a half old, she just stopped trying. We were lucky to have found an amazing psychologist, who is always booked but I knew the right person to get us in, here she works on play skills that our daughter is not performing at this current point! We see her once a week for an hour as well! She gives us homework to do such as your play target this week is taking care of baby dolls, etc. She has so many toys in her office and our daughter LOVES it!


Playing outside until it's time to go into our psychologist appointment.
Preschool
Again, in my case knowing the right people made all the difference!! Our psychologist started a speech and language preschool at the local university in 1981, she has since given that over to other people but recommended we check it out! I got a letter of referral from her and the speech therapist and we got in!! They only take four kids at a time and once you're in till you age out or if there is a better place for you then you may be transferred out.  Thankfully this hasn't happened and we've been with the same three boys since the end of September! 

What makes this preschool so different is that it is run by the head of the speech and language department and our children have one speech student assigned to them for the semester. They do circle, table time, playtime, music and then they will also split off for 30 minutes of speech therapy with their tutors.  Once a week our children also receive a speech session with a music therapist! Music has shown to greatly improve speech and my daughter just loves it!!

Occupational Therapist
Our psychologist had been suggesting occupational therapy for a while now but at the time I was way too overwhelmed and knew I needed to just focus on speech. Once we entered preschool she also suggested occupational therapy to support in calming her body so she can attend better to circle time, table time, etc.  Again, we were blessed to know the best and get recommendations from our speech therapist, psychologist and the director of the school program! We just started this journey and I can't wait to see what else changes or gets better with occupational therapy.

Here are a few tips that our family has learned and/or wished we would have done:
* If you don't have a support system for your child find one! It may be that your child is in school, make sure that the teacher, speech therapist and everyone is on the same page and pulling for your child!

*Keep a book either next to your bed or somewhere you frequent often and write down new words ANYTIME you hear one. Also date it! I wished I would have done that but didn't :(

*Celebrate the small accomplishments! Our accomplishments may seem small to some but boy did our kid work SO hard for that little thing!

* Practice but in a fun way! If you have a little child play with them and target those sounds or words that they are working on in speech but through play! I've seen an astonishing difference and growth in the kids during playtime and when their speech is target.

* If you see your child getting frustrated STOP! We don't want our kids to get to the point of frustration because it is hard and we want them

*If your child isn't connecting with their therapist find another one! You don't have time to waste! Depending on your child I wouldn't wait more than 2 months for the adjustment to occur.  

*Facebook has some great Apraxia groups that you can join which will give you information, an outlet as well as an insight into other's lives.

*It's okay to cry! It is okay to feel bad and upset with the cards your child has been dealt. Feel free to cry but once you are done keep on going! You've got this mom's and dad's!

* Take the time to enjoy your child! I know too often we are go go go but try to carve out time each day where your focus isn't speech, OT, PT, Fine motor, etc, it's just fun time with your child!
You are not in this journey alone! Find someone you can connect with! if you can't find someone please feel free to reach out to me I would love to be a support system for someone who is going through this! 

Let's go kick Apraxia's butt!