Real Life : Part One

So as we enter a new year, we also are starting on a new journey. Not one that many of our friends or family even know about. Over the last several months I have been starting on the path to have our son, our Marshmallow, evaluated for autism. This is not something that is easily spoken about or something we like to discuss. But I am tired of traveling this path alone. I have already traveled one path alone and that was stressful and difficult enough. I feel it is time to speak up and share our story with others. So others who may have questions, know they are not alone.

Why autism? Many of you who have met our son and interacted with him are probably looking at this and asking why? Thinking he is just in a stage and will grow out of it, why just jump off the deep end to this path? Let me explain.

As many of you know, Marshmallow has a speech delay. It is not something we are extremely open about, but is something I will share when needed. Over the last year our son has been in therapy for his speech delay. But our journey did not start a year ago. Actually, it began 9 months prior and only got on a path to take steps forward (being therapy) a year ago. It was a long frustrating 9 month journey, just to get to that starting point.

Back when Marshmallow was not quite 15 months old, I had begun to have concerns about his speech development. He had only just started to talk and had said his first (but questionable) words of mama and dada. I say questionable as he never really directed them towards us, it seemed more of just a babbling sound he preferred to say. We even noticed a pattern that he would say mamamama when frustrated and dadadada when happy and excited. I was concerned that he was not babbling more and that he had not really grasped any words at this point or was really mimicking many sounds either. Everything I had seen told me my child should be saying a few words by this point and he was not. Though anytime I mentioned concern with other moms, I was always told the same thing. "Just wait." "He will speak when he is ready." "Some children talk much later than others, mine didn't till XYZ (insert age of 2 or older)." " It will come and you will wish he would shut up." Not once, did I speak to a parent who told me to follow my mommy gut and pursue an evaluation. NOT ONCE. I regret listening to others and NOT following my mommy gut at this point in the game.

At our 15 month appointment for Marshmallow, I mentioned my concerns to his pediatrician. She asked a couple questions and said, yes that he is a little behind, but too hard to tell at this point. That she would do a referral for us pending where he was at during his 18 month visit. So once again I was told to wait. I listened. This coming from our medical professional. She was kind about it and most certainly played into my concerns, she just made it seem like it was too early to do anything. Looking back, I see this thought was VERY wrong. Speech is NOT all about what your child is saying, but is really about communication skills and those skills can be evaluated at much earlier ages. Most of the offices I have spoken to can test children from early ages and give therapies to one year olds or younger.  So why was I told to wait till he was 18 months? I will never understand and it saddens me very much.

So we waited. Sadly, we missed his 18 month appointment. We arrived 15 minutes late after leaving our house 20 minutes earlier than needed. We drove about 40 minutes to get to the pediatricians office. Sadly hit an accident just down the street from the office, and was stuck. We got there and were told to reschedule. Over being 15 minutes late, of which we usually waited at least that when we arrived on time. I was annoyed and frustrated as this now wasted 3 hours of our day for nothing. So we left that office and found a new one. I had to wait to get in for a new patient appointment. So at 20 months, we got in to see his new pediatrician. This time I did not ask questions. There had been no change in Marshmallows speech at this point, he added a couple words. But he should have been saying more than a few words and I knew it. I asked for a referral. She referred us to contact the state and go with the state run early intervention program (EIP). Every state offers a program like this.

The journey began, or so I thought. We had a start point, or so I thought. This was back in September of 2013. Marshmallow was now 20 months old. We contacted the state and they started the developmental evaluation process. We set up an appointment for someone to come to our home and do an evaluation. He qualified for services. They found Marshmallow to have mild delay with his self-help/adaptive skills, a moderate delay with his receptive speech and a severe delay with his expressive speech. After all these months of being told I was crazy, to wait and that I was just being overly concerned. My gut was 100% correct in knowing that our child needed help and had a speech delay. Now, we would finally start getting our son the help he needed and hopefully learn how to best support our child as we helped with his development. Sadly, none of that panned out the way we thought it would. We were told that under the newly reconstructed program in Arizona, Marshmallow qualified for once an month in-home therapy for 1.5 hours. That while we qualified, with it being a state program our insurance did not cover the services, we would have to pay for services out of pocket based on income based sliding scale. It took us over a month to get everything in place to actually start the therapy. Once we got it all set up and our first session scheduled, a few days prior it was canceled and needed to be rescheduled. We then had to reschedule the next one. And each time we scheduled it kept having to be changed. It seemed that it was just not going to happen. The availability was getting more and more spread out. At first the appointments were for a couple weeks out and the last one we had to reschedule was over a month out. I had enough. We were now into December. And loosing much needed time of therapy for our son. 

About this time I had taken Marshmallow in for a sick visit. I talked to the pediatrician about all this again. I asked what other options were available to us. That I felt that once a month was too little for the delay they said our son had and that it was taking forever to just get a session to actually happen. She gave me a list of private therapy offices to contact. I now had a new place to start. I began to call the offices. Leaving mainly messages and not really able to talk with anyone. Slowly I hear back from office after office. The story all the same. Either they are no longer taking patients or they have a 6 month wait list for services. SIX MONTHS. My son is now almost 2 years old and apparently the soonest we can start is when he is another 6 months older. I just saw this as 6 more months of time lost in the journey to helping our son. I was frustrated, overwhelmed and well had very little support so far in this journey. Even after having a diagnosis, when I spoke with others, I was still told I was crazy and that he will talk when he is ready. I stopped looking for support, because apparently it did not exist. Everyone wanted to live in a state about denial about their own child (if they were not yet speaking at this age) and I was refusing to wait. 

I saw first-hand in our family what waiting does. The longer you wait, the more pronounced the problem gets and the longer it takes to recover. I want to do everything I could to help our child hopefully grow out of this while he is still young. I wanted to do everything I possibly could for my child and here I was failing at doing exactly that. I wanted to get my child help and yet hit brick walls in trying to do so. I left more messages with offices. Called our insurance and asked for a list of every office in 40 miles that we could contact. I asked for referrals for other offices with each office I called. I probably called over 20 places before I finally got somewhere. Finally, I found an office that had an opening. Someone was discontinuing services and they could take a new patient as those on the wait list were unavailable for the opened time slot. A little miracle. It may not have been my top office pick or one I was originally referred to, but it was an office that could take our child and soon!

Once again we had to schedule an evaluation. This one was set for a few days before Marshmallow's second birthday. They wanted to do their own, so they could see where he was and what all he needed. I felt good about it. The therapist was very detailed and thorough. She spent a lot of time with us evaluating Marshmallow and asking us questions. There was no question of a delay. The concern mainly fell on his speech and communication skills. She found him to be severely delayed with both expressive and receptive speech, putting him at an 11 month delay. But basically had an overall concern for his communication skills. That the delay was more than just his speech, but his understanding of communication. She recommended for Marshmallow to do therapy for an hour one time a week. She also set us up with some initial goals to reach/work on over the next 6 months.

Finally, after 9 months we were at the starting gate and starting therapy for our child. For the last year, Marshmallow has been going once a week for speech therapy. It has been a journey. The beginning weeks and months of therapy was really more about teaching us as parents how to encourage speech in our home and how to work with him daily in everything we did to encourage his speech and communication. It most certainly had a learning curve. We learned how to help him and slowly learned what worked best for our child. We spent the sessions playing with Marshmallow teaching him how to talk. So most of therapy has been about training me as a parent to be his therapist at home. 

It has been overwhelming and hard at times. It is always hard to spend time around children much younger than Marshmallow who are just chatterboxing away. I get annoyed when parents judge my child and question his age due to his lack of communication skills. I get annoyed when I say he is in therapy and talk about all we have done to get to this place and I am STILL told "ohh, he will start to talk when he is ready" like it is just a light switch that will be flipped one day. That may have happened for your child, or you may just live in a state of denial that your child actually needs help in this area and refuse to admit it. But for my child, he will NOT just "get" it one day and start talking in sentences. Just not the cards we were dealt and I am so tired of the lack of support. Instead of saying "he will start when he is ready," tell me “You are an awesome mom. So glad to see you doing everything to get your child the help he needs. How can I help when spending time with your child?" Tell me you support me in my daily struggle, watching my child struggle. Instead of comparing my child to every other child out there, look at my child for who he is and the effort he puts forth in his struggle. I compare him enough, and do not need another reminder. This year was hard to watch three of Marshmallow's younger cousins (8, 9 and 11 months younger) surpass him with flying colors in speech. Each one can sing happy birthday, for months now even, as an example. While their renditions of this song may not be perfect, they sing it and the words of the song. Meanwhile, my nearly three year old cannot even say the phrase "happy birthday." Yet alone, tell you how old he is or even tell you his name. He cannot count to three, or even say any numbers unless it is mimicked. He is just starting to learn his parts of his body and sometimes will say them, but not consistently. His words are mostly approximations and you will probably have a hard time understanding his words that he does say.

It is HARD. I have tried to not allow myself to be self-conscious of all these things, but it is hard when people stop to stare or other moms make dumb comments. I really do not need these ignorant comments or comments of false hope in our lives. It is hard some days to spend the day with other children Marshmallow's age and them be able to express needs and wants perfectly, while Marshmallow has a meltdown because I have no clue what he needs or wants. Some days are better, some days are awful. Some days we make huge strides and the next day it is like it never happened. That is our journey. And despite a year of work, we still have a very long way to go, and that is very much okay. Everything in my day as a stay at home mom is about getting my child to talk and to encourage his speech and communication. To learn how to say new words, and teach him what those new words are and hope that he grasps them to use them on his own. He has made amazing progress, but with every step forward, he is falling another behind his peers. So here is our life, as transparent as I can be.

Continue to Part Two to read more about this journey for our family. 

http://smorepuma.blogspot.com/2015/02/real-life-part-two.html - part two