Friday, August 15, 2014

Mommy knows best

 This post will be very long...but its main purpose is to help me process emotions and help anyone else who may be dealing with anything similar.

This week, I experienced my first (of many) moments in life where I had to stand up for my kid. And it felt really good when I felt I was actually heard and got what I felt was best for my sweet EJ. 

The past 6 months have been filled with over 30 speech therapy (ST) and 10 occupational therapy (OT) sessions for EJ which has all helped him grow in so many ways. But, if you know anything about Early Intervention (EI), you know that at age 3, the program ends and if you qualify through your local school system, you can continue with services there. 

So on Wednesday, I sat in a meeting at Madison City Board of Ed where I was the parent instead of the social worker....Advocating for my child in a room full of people where only 2 others had actually met him. I love advocating for others and have done so almost daily for the past 5 years. But I don't believe any knew my occupation as they kept asking if I had questions or understood the process.  They asked what I felt his "strengths and needs" were among other developmental concerns. I honestly never thought I'd be on this side of the table listing my own son's strengths and needs, but it was surprisingly a  good feeling to have those things listed. 

Then the part of the meeting came where we had to discuss what evaluations we felt EJ needed to have. The lady (psychologist) leading the meeting kept focusing on EJ's speech/ communication difficulties and kept ignoring the comments from the EI service coordinator and myself (the only ones who actually KNOW EJ) about our concerns with sensory and behavior. Even after a 2nd psychologist said she would do a full developmental screening, the lady STILL wasn't on board. 
Finally, she looked at me (a 2nd time) and asked what I felt. I had already stated that I wanted any and all evaluations available for my son if that would help him. But this time I had to really step up to the plate and lay it all out there. 

The words that came out of my mouth next were words that I have only let come out of my mouth maybe once or twice before. Words that are very hard to come to grip with, hence the tear-filled eyes that came with them. "To be honest, I have come to the realization that a lot of the problems EJ is experiencing are going to last longer than just age 2 or 3. I feel there are things that we are going to be having to deal with throughout his life, and I want him to get the help he needs now if he qualifies."

Finally, the lady agreed and began checking all of the possible evaluations on the forms for him to receive. I think she then knew she was dealing with a very passionate momma who wasn't backing down. I told them that I understand he may not qualify, and that's okay...but at least we would know what "level" he is on, or what other things to expect. 

We pretty much know he will qualify for speech, as we're still not quite "there" yet. He has a very large vocabulary now, and repeats almost anything and everything you say. However, the clarity and pronunciation of his words are still very poor. He continues to talk with his mouth closed, or from the back of his mouth/ throat. 

Words he does say are so so sweet though. I'm amazed everyday at what all he does say. He can say some complex words like octagon and crocodile almost perfectly, but can't say others like truck or more. I don't understand a lot of it, but his ST and OT both say it has a lot to do with his oral sensory stuff and tongue movement. We're working on making silly faces in the mirror among other things there. 

As far as the "sensory issues" and behavior concerns we have, I'm still not exactly sure what to think about them. EJ is a very active boy, and I've been told that he is much much more active than the typical 2 year old. He wakes up at 5am daily and is ready to go from the moment his feet hit the floor. Some of my main concerns in this area are how he has meltdowns/outbursts if things don't go as planned. When I say this, I understand that toddler/ preschool aged children are known for this type of behavior, but the OT and other EI staff will also tell you that this is beyond what's typical. TheHubs and I often struggle with discipline (which we do very consistently) as we don't know weather he is simply having a meltdown and needs to be redirected or calmed or if he is misbehaving and needs direct discipline.  Sometimes this is easy to distinguish between, but other times its a guessing game. 

OT has done wonders for EJ in just the past 3 months. Prior to that time, he was sleeping in the floor, and waking in the middle of the night several times a week. Now he sleeps in his own bed (with blankets on top of him) for the entire night (7:30-5:00).  And yes, we've tried altering bedtime/ nap schedules to help with that 5am wake up call, and NOTHING helps. 
EJ also responds very well to time out now, and I feel this has helped significantly with his behavior. Our babysitter really helped get this rolling and has been great about consistency at her house too. She's seriously the time-out queen. lol

We are now working on creating a "sensory diet" for EJ including various activities for him that help get his energy out and focus on proprioceptive activities. This means that our couch cushions are often on the floor or we stand on our coffee table to jump onto the couch at times as well. So if my children come to your house and start to do these things, you tell them no and put them in time-out if needed.....and curse their parents for being so crazy and allowing them to do these things at home. 

We also have a huge box in our playroom where he is supposed to calm down. We're still working on that because he doesn't exactly like to get in the box and stay. The weighted blanket has saved him from spankings and time outs in the evenings as those are some of his most wild moments. He loves to sit with his weighted blanket and put puzzles together. (He's a genius with puzzles by the way!)

Of course I wouldn't change a single thing about our little monster. He's the sweetest little guy I know and adores his sissy more than anything else. He melts my heart more times a day that I can count...but also makes me want to pull out my hair at times. What kid doesn't?!? People often ask me how I am able to handle having a 1 & 2 year old and I always say "One day at a time." That is the only way I'm able to do anything. One day...with the grace and mercy given to me for that day from my Heavenly Father. 

Maybe I'll have an entire post about MissPriss very soon. She's a handful herself as well. =)