Putting It All Together: Project ImPACT

With the holidays coming, and school soon being done until next year, we won't have another visit from Early On until January.  That visit, however, is going to be both nerve-wracking and exciting.  We're going to learn about Lyric's IEP (Individual Education Plan). 

A recent bout of changes in our course with Lyric began when Melissa attended a conference about an MSU (Michigan State University for you out of towners) program called Project ImPACT.  While it is mostly used for children with autism, Melissa believes that Lyric would be an ideal candidate because of her skills being so splintered.  She made it very clear that she does not suspect Lyric has autism, she just thinks that the program would be an excellent fit for our family as a whole. The "ImPACT" stands for Improving Parents as Communication Teachers.  Not only will it create a better environment for Lyric to learn, but it will give us better tools to help teach her when we don't have therapy sessions. 

By agreeing to do Project ImPACT, we will be able to get one on one therapy for Lyric for two hours each week.  She will work with Melissa on her speech, and we will have an Occupational Therapist coming to show us what sorts of things we can do to help facilitate a structured "sensory diet" for her.  (A sensory diet is a series of structured play activities for Lyric to take part in each day that will help continuously satisfy her sensory needs.)  In addition to the therapies, we will be receiving training on how we can supplement and continue all of this learning by ourselves.  

The training lasts for 12 weeks, and includes the following topics:

·         Set up your home for success

·         Follow your child’s lead

·         Imitate your child

·         Animation

·         Modeling and expanding language

·         Playful obstruction

·         Balanced turns

·         Communicative temptations

·         Prompting and reinforcement

·         Teaching your child expressive language

·         Teaching your child receptive language

·         Teaching your child social imitation

·         Teaching your child play

·          Putting it all together

The great thing about all of this is that if she doesn't make enough improvements by the time she turns 3, she will qualify for a special preschool that will continue the teachings, at no cost to us.   

For the past few weeks we have been going through the process of re-evaluating her skills to get a baseline of where they need to start with the program.  It has been somewhat exciting, but it is stressful at the same time.  In order to begin the program, we had to "sign her up" for special education.  There's a lot of stigma attached to "special ed." in America, so it has been something that is difficult to accept for us as parents.  However, as I continually say, this is all for Lyric.  

By getting Early Intervention, there is a much better chance that she will be able to make improvements, learn, and grow to the point where none of this will be an issue for her by the time she starts school.  It sort of helps "reverse" the effects and take her to the point of being a typical kid.  Even if this doesn't happen, we will be able to learn things for ourselves to help ensure that she has a successful future, no matter what.  This is why I would encourage anyone who thinks that something may be delayed in their child to contact Early Intervention specialists as soon as possible.  Denial isn't going to do anything for your child, and the sooner you call - the sooner your child can receive vital help they may need.  Early assistance can help make a world of difference. 

"She Just Needs More Discipline..."

"She's just a confident child."  "She just has a high pain tolerance." "She's just being a brat." "It's a phase, she'll get over it." "Be careful - everyone wants to label everything these days." "There's nothing wrong with her!"

All of these are phrases that have been said at one point or another when the discussion of Lyric's evaluations have come up with family.  It's difficult to explain what is going on, because like us as parents, they just want to see Lyric become an intelligent, thriving individual.  Unfortunately, these are all phrases that should be added to a list of what NOT to say to a parent who is in the process of getting their child Early Intervention.

It took two evaluations, but we finally learned that the "Lyric Quirks" that we so often noticed were what are known as Sensory Seeking behaviors.  Sensory Seeking is a form of Sensory Processing Disorder, or SPD. The best description that I have found is that people who are sensory seekers have to experience everything with a great intensity.  It's like when you go on a culinary vacation.  You don't want to just eat burgers and fries when you're in Japan - you want to experience the intensity that their cuisine has to offer.  Sensory Seekers need to do this with every aspect of their life on a daily basis.

These are the Sensory Seeking behaviors that Lyric exhibits regularly:

• Chews on inedible objects - EVERYTHING still goes in her mouth at least once, and she has recently started chewing her hair.
• Seeks visually stimulating screens - She constantly wants something playing on TV even if she's not watching it.
• Loves spinning in circles - She can spin for 15 minutes and not get tired of it.
• Seeks out deep pressure touch - Bear hugs, tight squeezing - she'll climb on the part of the recliner your legs go on and put your legs on her body to create the deep pressure she wants.
• Feels little to no pain - She once burned her finger on a stove.  It blistered.  She didn't even squeak.
• Takes bold risks - She's always climbing on the highest slides at the park, she will frequently climb onto the top of furniture and free fall off of it.
• Chews on toothbrush - All day, if you would let her.
• Dumps out bins and bags of toys just to look at everything in them - Our living room is a constant warzone.  DVDs get yanked off shelves, card games get strewn all over, bins get dumped, etc.  it drives us particularly insane when we are clearing up the floor, and she takes everything we've just put up and throws it back onto the floor. 
• Plays with food/Messy eater/Overstuffs mouth - Mealtime can either be a battle or just fine, depending on what food she is eating.  Applesauce frequently becomes hair gel.
• Excessive sensory play - If we would let her, she would fiddle with shaving cream, or play in water all day and never get bored.
• Loves being barefoot - The only time she likes shoes is if she knows we're going somewhere
• Loud noises - She will crank the volume up on her radio in her room all the way if you let her.
• Can't monitor her own volume - She has frequently been mistaken for a pterodactyl.  

She also used to grind her teeth A LOT, but that has tapered off quite a bit in favor of other activities.  

Looking at this list, you might think that these are just the typical behaviors of a rambunctious toddler.  This is far from the case.  Sure, climbing on things is something kids do.  So is putting things in their mouths.  Eventually, a typical child will get bored of it, or realize they get nothing out of it.  A Sensory Seeking child will continue these behaviors well beyond when they were "supposed" to stop them.  A typical child would cry if the knocked their head on the floor so hard it left a bruised knot - Lyric never does.  This alone presents a great deal of concern for us as parents, because we have no real way of knowing if she is seriously hurt.  Lyric used to not exhibit fear over anything.  It was an extremely exciting day for us when we realized that she was whining for us to turn a movie off because she was afraid of a character in it.  These are the types of things that parents of sensory seekers celebrate.  The small victories that would seem so normal to an outsider.

An outsider would also be prone to judging a parent if they're allowing their toddler to put their mouths on objects that aren't food.  They would probably not think twice about the screaming toddler in the mall just being another kid that parents don't have control over.  I've gotten more than one sidelong glance from other parents in restaurants for letting Lyric fry paint with ketchup.  I've second guessed on more than one occasion if I should be letting her climb to the tallest slides in the park by herself.

It's not that we're bad parents.  It's not that she lacks discipline.  It's just her trying to fulfill a need that her mind and body has, for whatever reason.  The same as we need food or sleep to function, she needs to experience things in this way to feel comfortable with life so that she can continue to grow and learn.  Sensory Seeking is not an end all diagnosis.  We have yet to discuss what her occupational therapy for it is going to entail, and likely won't before the holidays.  The key to all of this is that we all have to learn how to tailor Lyric's world to satisfy her sensory needs, while still allowing her to be independent and function well.  It's likely to be a long, uphill climb - but I personally think that the top of the mountain is where all the best views are.

Speed Bumps

The problem with ending up on an unexpected road is that there generally aren't any maps to help you find your way.  It's like when you take a wrong turn on a trip, and rather than recalculating, your GPS just tells you to make a U-Turn as soon as possible.  In our case, we were in bumper to bumper traffic, with no exit in sight.  Forward was the only direction we could go.

We took our time to mourn for the expectations that we had.  The Mommy Guilt cropped up full force, leaving me to wonder if I had managed to breastfeed successfully, or if we had stimulated her in some areas more, or if I had done something different while I was pregnant, etc. - would we still be experiencing this?  The answer is likely "Yes," but that doesn't stop the irrational nature of thought.

According to the initial evaluations, Lyric was speaking at the level of a 12 month old.  She was socially at the level of an 18 month old, and her emotional responses were also behind.  Her motor skills were right on track, and her cognitive skills were at the level of a 30 month old.  After some initial discussion, we decided that we would focus on developing her speech, with the thinking that bringing her speech in line would cause the other areas to follow suit.

Unfortunately for everyone involved, we were in the process of moving from our apartment.  We had found a house to rent a few miles away, but those few miles put us both over the county line, and in a different school district.  After making a few phone calls, we figured out that we would be switching to a new Early On program, so the initial work with Lyric would be lost.  This, however, actually ended up working in our favor.

Once we had gotten everything squared away in our new house, we began regular sessions with Melissa, our new speech therapist.  Right off the bat she was confused about why our previous county had scored Lyric so low in so many areas, because she didn't think Lyric was that far behind.  We suspect that this is because Lyric "got along" with Melissa a lot more than the therapist from our previous county.  She was more comfortable with her overall, and this made her open up more for the first encounter.  A more open child means that more skills will be shared.  This is one of the first lessons we learned.

After seeing Lyric twice, Melissa informed us that she felt a more appropriate diagnosis for Lyric would be what are called "Splintered Skills."  These are skills that are behind, on track, and ahead - depending on what they are.  Rather than focus on a broad spectrum of bringing Lyric's speech up to speed, she wanted to focus more on each of the skill areas that needed improving.  The theory here was that once we got those at a more even level, the speech skills would follow suit.  This was a much more personal approach than our previous county was going to take, hence our move working out in our favor.

Since Early On is a very parent led program, we were given "homework" to do between each session.  We were supposed to try to force her to speak, by making it so that she couldn't get her favorite food or toys without asking.  We selected target words, and learned the sign language for those words, to repeat and try to get Lyric to use on a consistent basis.  Melissa would come by every 2 weeks to see how things were progressing, and make additional suggestions for things we could add to help her.  All of this led to an overwhelming amount of frustration for all of us, because Lyric didn't seem to be absorbing any of the information through those methods.  She was continuing to learn words and skills, but none of it seemed to be from what we were supposed to be using.  The sabotage of her environment was a bust, because she just figured out how to get at the things we were keeping from her, rather than trying to ask us to get them.  She also seemed completely oblivious to the sign language we were trying to teach her.

It was around her fourth visit that Melissa suggested we try something different.  At each session, we mentioned things that we just brushed off as "Lyric Quirks," and Melissa recognized as Sensory Processing issues.  She suggested that we have an occupational therapist (OT) come over to evaluate Lyric, and come up with ways that we could try to address these issues.  It was Melissa's opinion that Lyric wouldn't really begin to learn until her sensory needs were satisfied, and to us this made sense.  She described it as a traffic jam in Lyric's brain.  Nothing would move unless we could figure out a "Lyric Way" of directing the traffic.

We set up an appointment to have Tiffany, an Early Special Ed. instructor, come over and evaluate Lyric with a list that is called a Sensory Panel.  Her advice and determinations would dictate how we were going to proceed with the program for Lyric.  In a sense, she would be our first tour guide.  I was hopeful about making more improvements quickly, but what ended up happening was finding the beginning of another road to take.

An Unexpected Journey

When you have a child, you develop certain expectations.  A good amount of time is spent imagining the person your child will become.  When they will meet milestones, what schools they will attend, how soon they will walk - it's the natural course of parenthood, and the majority of parents consistently imagine only the best.  Their child will be gifted, popular, well behaved, and well adjusted.  No one ever thinks that their child will be deaf, or have delayed motor skills, or have behavior problems or mental illness.  If they claim that they do, they're lying through their teeth.

Along with the hopes and dreams you have for your child, comes the constant reminder that you are being judged on your parenting.  I can't tell you how many times I've had a conversation with a parent friend that started out with "I was THAT mom today."  The mom with the child that wouldn't stop screaming for a toy, the mom with the child that wouldn't sit still in the doctors office, the mom who caved and let her child have some pop or candy because they just needed that brief moment of blissful silence, or the mom that spent the entire wedding chasing around the active toddler. (This applies to dads, too, but since I am the mother in this case, most of this will be my perspective.)  With the judgment comes what is referred to as "Mommy Guilt," or the idea that nothing you do as a parent is good enough - because there is always someone out there who does it better, and don't you forget it.

Having said this, when the idea of your "Dream Child" gets blown off course, it can be earth shattering.  There are waves of emotions that you experience that you never knew were possible.  You have to learn to reconcile yourself with the new reality that, though it existed all along, is difficult to accept.  Your child is not going to turn out exactly how you expect them to.

We are no exception.  When Lyric was born, and even before she was born, there were many conversations about what kind of baby she would be.  She was a surprise, so we didn't have a lot of time to plan, or prepare for the idea of having a child before she arrived.  (Trust me, 9 - 10 months is really NOT that long.)  From the start, she had her own agenda.  I have a heart condition that makes pushing potentially dangerous, so I was scheduled to deliver via c-section on June 1st.  May 26th, I woke up feeling horrible pains in my back that I assumed were muscle spasms.  I was right, to a degree.  They were muscle spasms of my uterus.  Lyric had decided that today was her day to arrive.  We didn't even remember to bring a camera to the hospital, because we assumed I was going to be sent home on the grounds of "False Alarm."

From her somewhat unexpected birth, our expectations were thrown out the window.  Breastfeeding was all but a failure, but she thrived on formula.  She developed reflux, but it was easily controlled by medication.  She slept like a rock, only waking once a night to eat.  She rarely cried, and apart from when we didn't realize she had reflux, she was easily comforted.  She rejected pacifiers in favor of her thumb.  She met a lot of milestones early, which encouraged the idea that she was going to be a brilliant child.

 By the time she turned 2, it was clear to us that something wasn't quite right.  Her motor and cognitive skills were developing at a rapid pace, but her speech skills just didn't seem to be catching up.  When we brought up these concerns to our pediatrician, he said that he wasn't too concerned because she is an only child in the care of an at home parent.  She gets very little interaction with children her own age.  However, he also suggested that we contact Early On to have her evaluated. 

A few weeks later, they came to our apartment to test a variety of things, like her cognitive skills, emotional responses, and speaking abilities.  I had to work that day, so I anxiously awaited an update from Travis.  That unrelenting "always the best" parent part of me was hoping they would figure out that she wasn't behind, and their services would be unnecessary.  The rational part of me recognized that this would likely not be the case.  Sure enough, the completed evaluation confirmed that she did have a delay in speech.  It also indicated that she had some sensory, and social emotional issues that might need addressing. 

So our adventure into Early Intervention, speech delays, and sensory seeking began.  It is not the road we thought we would be taking.  It has been full of twists and turns that are overwhelming and scary.  The important part to remember is that this road is not a dead end.  It's merely a different path to take to help Lyric find a way to express herself, and the thoughts inside of her brilliant mind.  That it is for her, above all else, is why it matters so much.