Follow that bus!!!

It’s one thing to seek information, it’s a whole different thing to follow it confidently. 

The recommendation was speech therapy twice per week. The ease with which the professionals tell you how it all works and you take it in understanding it and confident in the moment. When the time comes for action though, that’s a whole different ball game.

The Early Childhood Center was in the area so things being divinely ordered - as they often are - the bus would come and pick her up at daycare and bring her back. Again, sounds great in the moment but it's a completely different story when the bus arrives!!

 

Imagine being three years old and having to leave the security of your child care provider who you’ve been with since you were 3 months old. You have no idea where you're being taken,, but it sure looks like everyone is in on it. The caregiver puts on your coat and hat and shuffles you outside to a big yellow bus talking reassuringly all the while. Unfortunately, you don't understand what's happening. Can you imagine the fear? And, because you have a speech delay, even though they're telling you where you’re going, it doesn’t mean a thing. That’s her side of the experience. Mine is a little different.

In my head, I understand that therapy should or could help. I certainly appreciate that my tax dollars make it possible for the bus to pick her up and bring her back. I appreciate that I don’t have to pay anything out of pocket for this vital service. But, you want me to put my 3 year old on a bus with people I don’t know.

Are you CRAZY?! You don’t know how crazy a concerned parent can be. Yes, I followed that bus.

I watched in the parking lot as she was loaded on to the bus…crying and confused. I followed the bus to the school and made sure she got off safely. I don’t remember now what I did for the duration of the therapy session but I do know I followed that bus back to the day care provider. We survived. 

Over time, the bus ride became easier for her and for me. That was until the therapist called one day and said “your daughter missed the bus”. Is you crazy?! How is a three-year old going to miss dah bus?! Ain’t that your responsibility to get her on and off the correct bus?! Ay! She quickly reassured me that my child was with her and they were awaiting the return of the bus. For all of the failings and complaints people have about the school system, my introduction to the services was pleasant and manageable - well except for the part where the 3-year old missed the bus.

All in all, those first months after the diagnosis were not so bad. There were moments of discovery - opportunities to learn about local and state systems that could provide support. Situations that supported what I already knew about the diagnosis, my child, myself. And certainly, opportunities to follow the bus to ensure we were headed in the right direction.

Join the Village

They say it takes a village to raise a child.  What does it take to raise a child and support the parents through the journey?  A village within a village.  I'm inviting you to become a 'follower' of this blog.  Following allows you, me, and the rest of us to see how big the village within the village is.  So, when you're finished reading this posting, just move over to the right of the screen and 'sign in' as a follower.  That's it.  Encourage your friends and others who view the blog to also sign in.

Who knew?

Now that I've been on this journey for almost four years, I can stop, take a breath and ask myself, "Who knew?"

Hindsight isn't always 20/20...it's just my inner spirit saying 'my soul looks back and wonders....' 

Where were the words? There's so much that they don't tell you about the developmental milestones. There are milestones and yes, while every child develops at a different pace, there are some clear signals when something could potentially not be going right. My princess was quiet and such a charming person. She did the first sounds, but I didn't realize that her language development was not on track.

When she was almost three, I heard another 3-year old speaking in sentences. Why was my child's speech so garbled and difficult to understand? Even when you're afraid of the answer, you should still ask the question.

The pediatrician heard her speak and said "I can't understand a word. We should have her tested."

Even at that point, I still had no clue what I should be concerned about, so I wasn't really anxious. Who knew?

Babies are a joy. Babies are a blessing but who knew that there was still so much that a new parent had to figure out in addition to the feedings, the immunizations, and the best child care options, social skills and then there are the developmental milestones that are just as important. Who knew?

Inside, Outside, Upside Down - Huh?!

Who decided up was up and down was down? Moreover, how do you teach those, with words, when words (spoken and received) are your challenge? It’s all in the pictures.

She was learning about inside and outside. Now that I think about it, what makes inside inside? Who decided that outside was outside? And if you’re three years old and new to the planet with a speech challenge then none of it makes any sense. When asked what you see outside, she gave me something that in her mind was an answer but wasn’t the answer.

How did we deal with that? Get moving….go outside and talk about outside; point to things; name things. Then, go inside and talk about inside; point to things; name things. I know, these are things you should be doing anyway. But, if the language and the concepts don’t make sense in general, what makes you think that talking about them with no real purpose is going to be any more successful.

Discovery - seize the moment. I learned to quickly think about the best visual to support the early childhood concepts.

Up – down; in- out; before – after…all of these a fundamentals to pre-reading and pre-math. If she doesn’t get them now, knowing what comes after 5 will be a struggle. 

Discovery - there’s lots of information about early childhood concepts; you have to figure out which comes first the chicken or the egg. 

Discovery - multiple intelligences (Howard Gardner). An excellent resource on how to tap and strengthen your child’s other intelligences. For us, experiencing the concept made the words meaningful. See, feel do…that helped the words develop greater meaning. Music and rhythm were the glue and the channel that we function on. Anything can be turned into a song…music appeals to her and she has grasped the concepts through movement and music…so, sing, sing, sing!

Find the message media that works for you – sing, dance, draw, act. Your child has gifts – find them and use them as you work your way through the early childhood concepts – inside, outside, upside down and all of the other pre-school concepts that pave the way for the future.

Journey of discovery

Having the baby is the easy part....the rest is truly a journey of discovery.

At the speech and hearing clinic I was advised to provide her with visuals that indicate the routine. I bought flashcards and put those up around the house – action words and names of things were attached to double sided tape and put up all around my brand new house. I wasn’t concerned about the impact on the walls or the décor. My house became a learning lab of visual stimuli to help massage the brain and stimulate speech and language acquisition.

Discovery – when it comes to your child, décor takes second place to functionality. It’s up, she sees it, we can say the words and demonstrate the actions – that’s my interior design standard and I’m sticking with it!

So with the PDD-NOS diagnosis what comes next? I must confess, I spent the first few weeks going through the ups and downs of ‘ah-ha, well now it makes sense why we had this but not this’ and the pain and confusion of “so what does this mean? How can I help her? Will she be alright.”  It is a journey but I chose to be committed to being optimistic.   
                                                                                              
Yes, they gave it a name. Yes, I understood what it meant in terms of the blank look and having to say things in multiple ways. But oh, now came the pain of figuring out how to help her and help myself. How to communicate to others the basis of babbling or the echolalia…all real signs that might have meant something to me if I had been aware of the whole Autism spectrum thing.

For me the label was not a problem. I remember telling one parent the diagnosis and the response was “ I don’t like labels”.  You know what, you don’t have to like the label but you sure ‘nuff can’t treat or resolve a problem if you don’t know what it is. By giving it a name, I had new found power. I knew, to some degree, what I was dealing with and truly, the Lord was at work because now, all of my formal training in a seemingly unrelated area became the resource that guided my actions.

Discovery – other people’s issues are just that their issues. You’ve got to do this journey in a manner that is comfortable for you and likely to achieve the results you’re looking for. The goal for us not simply comfort. It’s speech development and understanding how this child is differently gifted.

First things first – I told my pediatrician of the diagnosis and was referred to the Maryland Child Find program. That’s the infant and toddlers program for children with developmental delays and other challenges. What luck! As I discovered perhaps two years later, Maryland is one of the few states with a robust infant and toddler program.

We were scheduled for an assessment…another round of testing (games as far as my daughter was concerned). The results were the same…you could see, hear, and feel the confusion and the obvious ‘what are you saying?’look. This time we got even more specific information that informed the recommendations for therapy.

Discovery – early intervention is REALLY a huge key.  Having already followed the recommendations received at the speech and hearing test with the flash cards for stimuli, I was ready for some new guidance.

With each new piece of information, every milestone that she reaches and achieves, every milestone that goes unchecked presents an opportunity for a new journey of discovery.

Beyond Denial

There's so much excitement once the baby is born, we sometimes forget that there is much we still do not know.   She was a quiet, well-behaved baby.  Never made a mess with food; didn't have difficulty eating with a fork on the first try; not a sound in church.  She was, and still is, adorable.  But who knew?

I took the doctor’s advice and I had the speech and hearing test done. She could hear – that wasn't the problem. The challenge was the speech part. Watching the professionals do their job was enlightening and yet disheartening. For the child, it’s all fun and games. As the parent – I suddenly realized what gaps existed. Simple instructions and questions go unanswered.

In my own world of joy, I failed to realize how much was passing my child by or simply not being acquired. The good news was that the development was like a star with points….there were places where she was way ahead and there were places where there were developmental delays. I was still very naïve so I left relieved and committed to taking the hearing test just to be sure that there were no problems there.

Hearing test was fine…she could hear the noises and respond as required.

 Being satisfied with results that make you comfortable could be a mistake.  Because I was really not sure what I was dealing with I tried to find a place that could give me a broader and more specific assessment. I was in luck…Johns Hopkins University is the home of the Kennedy Krieger Institute (KKI). You really don’t know what you don’t know until you make a discovery. Kennedy Krieger was a discovery of immense proportions. Not only did I learn about the range, scope, and quality of the work they do, but I also learned about a condition I had only heard of in passing – Autism.  Now I became worried…what if this was the diagnosis, how would she survive in this world? How would I survive?

The developmental assessment was eye-opening to say the least. Sometimes it's not just about the money.  It was costly but I had to have answers. Some kind of guide to what the future might hold.  If you want information, you sometimes have to find the money to get at least a hint at the answers. Let's not even talk about what is covered by the insurance and what is not.

The testing session, like others, featured games and simple requests for my daughter to complete. The first couple of questions seemed pretty harmless and she kind of answered. Reality struck when the practitioner simply said “put the block on your nose?”  It seemed easy enough to me so why was there this blank look. I knew the look…it meant ‘what are you saying?’.  I’d seen it before but it had never registered as an indicator that things just weren’t connecting. My heart sank…it only got worse from there. Simple requests…draw the pattern, finish the pattern, complete the pattern…..nothing. Then there were the questions asking for information and nothing could be produced. While my heart sank, the godmother who was with me affirmed and encouraged my daughter.  I may have done so but I remember most the sense of awe at how far behind she was.

The diagnosis – well, she’s not autistic. (That’s good news, or is it?) She’s got PDD-NOS….pervasive developmental delay not otherwise specified…and it manifests as a speech delay. What does this mean?!  I understood clearly that at 36 months her language skills were at the 18-month range.  I could do the math enough to know that represented an 18-month lag.

And so began a new and different journey in parenting. Something stole the joy of being a mother and replaced it with confusion, anguish, fear, concern not only for my child in the present moment but also the future. With this diagnosis, what kind of future could she have?

Getting past or through the denial is the first step in a long journey. But, there is life, hope, joy and triumph once you get beyond denial.