TGIF (Thank God It’s February)

1 Feb

So, January 2012 was the month from hell.

Oh, Hi there. How are you?

I haven’t blogged in quite awhile and my next post is an attempt to explain why the hell not.

To attempt to make a long story short, Jude has been having some issues that we have been noticing since he was about 1.5 years old. At the forefront of them is his lack of communication/lack of progress when it comes to language & communication. Its very common for people to brush off these kinds of things and throw out things such as “Boys will be Boys!” and “My cousin didn’t talk until she was 7 and shes a GENIUS!” So we went with that for awhile. Ruby was born and we thought maybe his regression was OUR FAULT. Because, good parents blame themselves, not their children.

In addition to Jude’s language delay, we have noticed that he seems to be a very anxious kid. Meaning, he has a lot of coping mechanisms for “anxiety”. We noticed all of this progressively getting worse, in addition to prolonged and sometimes self-destructive tantrums. One day, after an out of the ordinary accelerated tantrum, Michael sat me down and basically had an intervention with me.

It seems like you are always making an excuse for Jude’s behavior.

Ouch.

The following day, we had an appointment with Jude’s pediatrician to have his ears checked for a cold, so we decided to go ahead and speak with her about some of our concerns. We didn’t really have to convince her that something wasn’t right, when Jude through another scary tantrum in the Doctors Office that day.

She recommended we get in touch with an organization called Alta Regional and set up an appointment with the Developmental Pediatrician and a formal Hearing test with the Audiologist (they always check a child’s hearing first when there is any kind of language delay).

Alta Regional is a God send in every way. They immediately understood what we were going through and got the process rolling for us. First, Jude had an evaluation with an Occupational Therapist.

In a nutshell, the OT believes there is something wrong with Jude’s nervous system. To a normal person, things such as bright lights, loud noise, itchy sweaters, etc. cause annoyance. But to Jude, it causes extreme anxiety. Reality and how Jude’s brain and body interpret the world around him are two different things. For instance, something as simple as having Jude change out of his clothes and get into the shower can be extremely anxiety inducing and stressful, despite whether or not he actually loves being in the bath (which he does). So what the Occupational Therapy is going to help do is help Jude deal with his anxiety and hopefully help his brain and body learn how to regulate the anxiety. For example, at Therapy, there was a bucket of balls. Because seeing that many balls at once is so overwhelming to Jude’s brain, his reaction is to dump the bucket of balls and try to roll around in the balls instead of making the choice of picking one ball to play with and be satisfied with that.

Because of the issues with his nervous system, things like depth perception, height, weight, texture are being misinterpreted by Jude’s brain. For example, Jude loves to swing and enjoys swinging very high. But if I pick him up and set him on the kitchen counter, he shakes with fear. Because he is unable to regulate or understand how high he actually is.

Part of the reason Jude enjoys being so rough or maybe even seems to “enjoy” small amounts of pain is because it is a physical release for his anxiety. In the same way that sometimes when we are mad we feel like punching a wall. He also doesn’t have the capacity to regulate how rough he is being so that is why he may even “hug too hard” or express even joy in a “hard” way.

Now, in terms of his lack of speech, the therapist said the reason he is so far behind is because of all this going on in Jude’s brain constantly, he isn’t in the right frame of mind to learn or be taught new things. His brain is too busy thinking about all the other things around him he sees, smells, hears.

The OT recommended that Jude is submerged in intense Occupational and Speech therapy. Especially because Jude can be of danger to himself until he learns how to better monitor his senses and anxiety.

A lot to take in. Que panic attacks, vomiting and little sleeping.

The following day was his assessment with the Speech Therapist.

The ST came to our house, which is where his Speech Therapy will take place weekly. The ST seems super knowledgeable and again I like she totally understood Jude and where he is struggling instantly. She agreed with everything the OT talked to us about the day before, in terms of Jude’s sensory issues and his need to get those things sorted first and foremost. Mostly we just talked about Jude and she observed and played with him. All of his therapy will be “play lead” because that is the easiest way for him to continue being interested. The OT & ST both agreed that “playing hard” with Jude is what feels good to him and will help relieve a lot of the anxiety that he has.

We are going to be starting adding more Pro-Biotics (powered) and DHA Fish Oil (liquid) to Jude’s diet as the ST recommended. She reccomends that we focus on teaching Jude words while playing with him in association to a movement. For instance, simply jumping/hopping with him and saying “Jump, jump, jump!” or tossing him into the air and saying “Up”. He is much more likely to participate when physicality is involved. Another tip she has given us to help him with his anxiety is to tell Jude our plans before we attempt them, for instance when he wakes up in the morning say, “Okay Jude, first we are going to change your diaper, then eat breakfast then we will go outside and kick the ball”. Or if we will be taking him out of the house, try to prepare him for what the environment will like, as in “Jude, today we will be going to the play area at the mall. We are going to see lots of kids and bright lights and loud noises.”

Most importantly we need to focus on making all kinds of silly sounds with him, like “Vroooooom” when playing cars or making animal noises with him. This will help him see the importance and fun involved with communication. Right now he doesn’t really understand the need for it, so we need to make it more appealing to him.

She also recommended using songs like “Wheels on the bus” and “Itsy Bitsy” to do with Jude, any songs that have “signing” or physicality associated with them.

I asked her what “term” might be used to describe the struggles Jude is having and she said, while she is not the person who can officially diagnose these things, some of the terms we might hear on the evaluations would be Sensory Processing Disorder, but she acknowledged that she can tell how smart Jude is and how much Jude wants to be intimate and interact with others, which is not typical of a child with Autism, so this Early Intervention is going to help him extremely. Also it’s important to add that just because he is dealing with this now, does not mean that he will be dealing with it forever.

So the following two weeks consisted of more panic attacks, crying, hugging and worrying by Michael and our families. We waited for the appointment with the Developmental Pediatrician like it was Christmas morning. If, by that I mean, Christmas morning consisted of someone punching you in the face repeatedly.

Well that day was yesterday. I woke up at 6am after having a bottle of Sparkling Wine before bed like it was my job. Michael said he was impressed with my ability to kill a bottle of wine so fast as he hadn’t seen me do that in a while.

We got ready and my Mom & Everitt came to watch Ruby while we went to the appointment. Well, first I threw up twice, then we left.

Once arriving at the hospital I began to feel my feet getting very heavy and my heart began to beat so fast I started getting paranoid that the people in the elevator could hear it.

Michael let Jude run laps around the lobby while we waited for 20 minutes (felt like 200) and eventually we were called back by the Developmental Pediatrician and his Nurse. We were taken into a room that reminded me of a SVU scene and they began evaluating Jude. Asking him to do certain puzzles, tasks, speak, etc. Then they interviewed us, reviewed the other Evaluations, etc.

After awhile the DP said, “Well, Jude shows no signs of Autism, Retardation, Cerebral Palsy, Deafness or any other genetic disorder that we can see.”

Try to remember the happiest feeling you’ve ever experienced.

The multiply that time about 100 and that is how Michael and I felt.

Not that we really thought or worried (okay maybe we did) that those things would be wrong with Jude, but to have someone who knows what he is talking about calm that fear inside of us? Well, its the best thing I’ve ever heard.

So we went on to discuss about Jude’s therapy with Alta and the Doctor agreed that is the best thing we can do for Jude at this time. He said Jude does have a 40% language delay, but it is more common than people think. 1 in 10 children have a language delay. He couldn’t (or didn’t want to) really discuss Jude’s nervous system issues with us, because, that is not something that Kaiser considers to even be a disorder (because then they would have to actually treat him, god forbid). But he did say that children that receive treatment for Language Delay before the age of 4 are likely to not only be caught up to their peers by the time they enter Kindergarten, but can often surpass their peers as well.

We thanked him for his time and we were on our way. Jude had his hearing test yesterday afternoon and although it was painful (lots of screaming) he passed with flying colors. The Audiologist said she actually thinks Jude has immaculate/accelerated hearing ability for his age.

So, where do we go from here? Well, I got an email from Alta as soon as we left the DP letting us know that Jude is approved for OT & ST!!!!! We will be getting him enrolled this Friday and hopefully that means that he will be able to start his Therapy asap!!!!!!!!

Michael said he has never went from so sad to so happy in one day before. I couldn’t agree more.

Why are we sharing this information with all of you? Well, because its our life. And truthfully the only people that read this blog are people who love us and are there to support us every step of the way. Now that we are into the GOOD part of the process, I can’t wait to share all of Jude’s PROGRESS and SUCCESSES with you.

To all of our close friends and family, we cannot thank you for all of your thoughts, prayers & support over this past month. I can’t tell you how much it has meant to me. I’ve never had to walk through something so scary and stressful in my life. Now I feel such a renewed sense of hope and joy for my little baby.

Jude is the sweetest, cutest, most loveable, fun, thoughtful, loving, generous little boy in the whole world. He makes our lives worth living in every way. We are so blessed to be Jude’s parents. Thank you God for trusting us to care for this little angel. He means more to us that words can truthfully say. So, I’ll stop talking now.

If you made it to the end, you deserve a cookie.

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9 Responses to “TGIF (Thank God It’s February)”

  1. B Kaye February 1, 2012 at 1:43 pm #

    ❤ ❤ ❤

    Thank you for sharing, Tiff. I am so excited for you guys to be able to act with the knowledge you have now instead of living in the unknown. Jude is such a great kid. Love you guys!!

    now, where's my cookie? 😛

  2. Julia Gulia Valdez February 1, 2012 at 2:28 pm #

    This is amazing! I’m so happy for you guys and for Jude 🙂 It’ll be a great thing!

  3. klink February 1, 2012 at 10:54 pm #

    So happy for the whole family. There is nothing better than meeting people who know and understand what Jude’s going through.. such warm relief for you! loves and always

  4. Lauren Bryant Jenkins February 1, 2012 at 11:48 pm #

    Gosh. I had NO idea you guys were going through all of this. That’s so stressful, but the therapies will do WONDERS for him. Just learning how to process what he’s feeling will make an incredible change in his behavior.

    YAY!

  5. amanda krebs February 3, 2012 at 10:20 pm #

    I was on the edge of my seat for this one. So happy to read there was a good ending through it all. You guys are truly great parents.

  6. Krystal @Tiealitleribbon February 21, 2012 at 9:19 pm #

    Oh Tiff. I need to compose myself after reading this. I am SO glad that you seem to have some answers, and a great team AND a great plan in place. Jude is an amazing little boy that I hope to meet one day. You and Michael as truly amazing, inspiring and so strong. Thank you so much for sharing this, I can’t want to hear updates and cheer Mr Jude on. Lots of love sweetie. xo

  7. Amanda (@TheMandalyn) March 9, 2012 at 8:53 pm #

    Hey Tiffany, This is Amanda Nelson (AKA Lubbins) from back in the board days. Anyways, I saw your blog on Krystal’s blog page and read your most recent post on Jude and SPD. I too started noticing problems with my son Wyatt at 1.5 years old and after a lot of mama warrior moments I got him into EI with the diagnosis of SPD as well. His symptoms are speech delay, sleeping issues, and eating problems. We haven’t had him taken to a specialist to check on autism etc yet, but mainly because I am hesitant on if the doctor can give a 100% sure diagnosis at his age. I am so happy you guys were able to rule all those things out for Jude…completely understand the overwhelming joy you must have felt!

    So glad to know of another mom battling SPD with their child. I look forward to hearing more about your journey and the techniques recommended to you all.

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