Our Story

The somewhat condensed version (I'm still desperately sleep deprived 4 yrs into motherhood)

When my son was 10 months old it hit me. When do children respond to their name? I Googled it and every result scared me to death...

My delivery was normal and my son was a good baby for the most part except for his evening scream fest like every colicky baby. I rocked him to sleep every night and he loved his swing. He was never a good sleeper so starting at 3 weeks we would put him in his swing in front of the T.V with a Barney video. He was happy and we could go back to sleep for an hour since he was up most of the night every night. He would wake up to eat every two hours and would take an hour to eat. I cried every night saying I don’t want to see the clock anymore at 2 am. You get over that after you’re a mom a while longer. You just suck it up and drink your coffee ;). I rocked my son to sleep every night and eventually it had evolved into an intense rock, swinging motion. He literally got too heavy for me to do it but it was the only thing that worked. We eventually did a mild cry it out where I cried and he whined with a few tears. He finally was able to put himself to sleep but would still wake several times at night and often for several hours at a time.

One of the nights I had been rocking him in the middle of the night (this I did continue for a long time) he started humming. It was sort of a rhythmic hum. I thought that since I had stopped singing due to exhaustion, that he was seeking the vibration. We later learned this was not the case.

So at 10 months I realized my son was late to respond to his name so I started to try things at home. I would clap directly next to his ear, call his name, yell his name etc. He did not respond to any of these. We tried it with the TV on (which we had on often and he was obsessed with), with it off, and as many other variations we could think of. I was really starting to worry. I had this little nagging for months before and even made up a little lullaby about how perfect he was but this was the first real wake up call for me. At our 10 month check up I mentioned my concerns to our doctor who has always been very supportive of us. He said he saw what I was referring too but that he could just be very interested in what he is doing. He was flipping through a board book while the doctor yelled, danced and clapped his hands so loudly that the patients in the next room likely heard. He never even glanced up. Our doctor said that we should watch it and we would keep up on his progress. At this time I also expressed my concerns about my son’s speech development or lack thereof. I explained that everyone keeps telling me he will talk but it wasn’t the speech factor that worried me, it was the fact that I knew my son did not understand me. I said I don’t care when he talks, I care that he doesn’t have any idea what I am saying to him.

At his 12 month checkup my doctor was out of town and we saw his partner. She told me that if he wasn’t using Mama and Dada with intent than he was delayed. Another layer of sick worry added to my load. He had babbled Mama and Dada around 8 or 9 months and still babbled other sounds but not those anymore. I cried the entire morning of my sons 1st birthday. I was having a house full of people and hated that I worried that my son would be judged. I knew in my heart something was wrong but hated every minute of knowing. I spoke to the nurse at my doctor’s office and she was so kind and understanding and did her best to reassure me that every child is different and that he is just fine. I made an appointment to follow up with my own doctor after how awful I felt after leaving my appointment with the partner. My son had developed motor wise, pretty much but a family friend had a baby a few weeks after I had my son and she was doing all kinds of things.. It was a hard day.

My son walked at 13 months but one day we were at lunch and everyone wanted him to waive bye-bye. He looked at them like they were crazy. I kept saying I have never worked with him on that. Honestly I blamed myself for any delay I came across thinking I was supposed to spend time on that skill, my husband blamed T.V. Now that I have a second child I realize that they pick up those things on their own and we were not responsible.

I met with our doctor again around 12 months and we decided to take action. He said we can still wait but that he knows me and knows that I don’t sit still very well so let’s get rolling. He still was optimistic that everything was fine. He suggested it was possibly an IQ issue. We also later learned that it was the opposite IQ issue than he originally thought. (We have a super smarty pants ;) ). He referred me to a doctor nearby saying that the top doc in town was higher priced and to go meet with this one first. After speaking to him on the phone I decided to start at the head instead and called my pediatricians office back for the top dog’s number. They ended up giving me an old phone number for a doctor no longer practicing by mistake so after many wrong numbers and referrals I ended up with a referral to a local hospitals early development center.

The developmental pediatrician we met with there was highly recommended and she was a great first step for us. My son had a particularly quirky day the day of our visit and oddly he never had done many of the things he did that day, before. He had a laughing jag that morning which he has only done one other time and it was after the appointment.  A few doctors have said that he was likely thinking of something funny as he didn’t do this for very long. He felt and rubbed the walls in the office, she rang a bell in his ear and he didn’t respond and he was hyper focused on the design in the carpet. He was lying on his tummy and we put objects or snacks right beside him or directly in his line of vision and he did not acknowledge them or us at all. The doctor said that she didn’t want to diagnose because he was so young (15 months at this time) but that he definitely had a severe speech and language delay. She told us to call the local Early Intervention program and to take him for a hearing test. Also, she told us to take him for a speech evaluation.

The hearing test was the most traumatizing experience ever. We did run over to an ear doctor who happened to have a deaf daughter, while we were going through this process and he assured us that he really didn’t think that hearing was the issue. This was bitter sweet news. We went and had a hearing test where they put him in a room and turn on little toys with sounds and call sounds through speakers to see if he will respond. He did poorly in this phase so they referred him for the more intense test. This was where the trauma began. They advised us to get the test at the children’s hospital where they have you drink a liquid and it puts you to sleep. I couldn’t imagine how I was going to get my picky eater to drink this random substance but also I didn’t want him to go under. I was sick with anxiety. I called the other hospital where the first test was performed and they agreed to try to do it after I rocked him to sleep. He had to be completely still for this test but since he didn’t know what I was saying I couldn’t just say sit still. The day of the test my dad came with me and the two of us spent over an hour trying to get him to sleep. Stroller walks, rocking, milk etc. We were drenched with sweat but we finally did it. We quietly rolled the stroller into the room where the tech had to put probes all over his head and in his ears. She took the cream, put it on one of the metal pieces to be placed on my sons head, and rubbed it as hard as she could while shaking him. He woke up instantly. I still could cry when I think about this. She did the part of the test she could do with him awake and eating a sucker since he was hysterical and we left with an incomplete test.

I took this test to the speech evaluation and waited an hour in their waiting room. My son was miserable waiting and I was a wreck. Finally the girl came out and said sorry but the test is incomplete so we can’t do your eval. The tears came then. We went back and went through the torture once more and luckily this particular day the “waker” had an assistant who was very gentle. We completed that test and I have never been so relieved. When we did go get our evaluation it was with a different therapist (thank goodness) who said that she was appalled that the girl didn’t do the eval and then require the test be completed before treatment began.

My son was 16 month’s old now due to the scheduling of the required tests and evaluations and at this time he was diagnosed with a severe speech and language delay for both receptive and expressive language. His evaluation stated that he had delayed play skills and lacked some social engagement.  I cried when I read report.

We did contact the local Early Intervention program at this time and their rep came out for our eval. I remember she asked me if my son could stack two blocks and I told her I didn’t know because he would mouth every toy so if I gave him a block he would put it in his mouth rather than stack it. He would throw things on the floor to hear the loud bang and often pushed toys around almost like you would a toy car but instead it was a ball or a book. He liked to swing and he also loved to watch things spin. Not exactly playing appropriately with toys… Light up and noisy toys he loved but we did cut back on them at this time. Our rep said he was eligible for services, gave me the paperwork for the district and told us a few things to try. She told us to use beans as a sensory tool but when I put various dry beans in a bowl, again my son ate them rather than play with them. She also suggested I photograph his cup or favorite food or toy and tape them to the fridge so he could request what he desired. He thought they were fun to look at… When my son was 26 months old, that is when he started working with those things that were suggested. I called the schools because I realized that early intervention was through the special Ed department and didn’t want my son to have a record forever if he was in fact released from special ed. The head teacher sort of scared me away saying that yes this can always be accessed. We decided to hold off on that but we were doing our own private therapy at this point so it was alright.

It later turned out that the doctor our speech evaluator had suggested, was the top dog who my doctor referred us to after I went back in for a check up and told him I wanted to know once and for all and wanted to be told what to do next. He said this guy knows. We went for our evaluation when our son was 18 months old, the Friday before the 4th of July.

The doctor was honest, straightforward and compassionate. He observed my son asked a bunch of questions I expressed my concerns and then he said look I see how you are I’m not going to hedge here; I cried. I did not want this for my son; I told him I gave him an extra cute name so it would look good on business cards. The doctor told me that he expected him to overcome most if not all of this by the age of 3 or 4 as long as we hit the ground running and intervened. I had been on a waiting list since that evaluation for speech but could not get my son any appointments or a standing. I decided that day to try somewhere else even though this hospital had the best reputation in town.

The doctor said you do speech you do OT and you do some sort of play. He is the founder of the PLAY project which is based on DIR but he said do that or go to the local center that offers a similar program but get started. I called the center on my car ride home and told them I wanted some information. I decided to go with the doctors program instead. The fees were similar but his program was a parent training program that had a consultant come into the home and teach the parents how to appropriately play with their delayed children.
I did the PLAY project with the consultant for 4 months even though 12 months is recommended. The concept is to avoid having to take your child to hours of therapy for tons of money and learn to do this therapy at home. It’s an amazing and wonderful program and even though my family was already good players by nature we learned the concepts and perfected the skill. We had the consultant come out to the house for these 4 months and she would stay for 3 hours. It was very hard for me to have someone in my home telling me how to play with my child and video me doing so. This for me was a labor of love because even though I knew it was the very best for him, it was still hard for me.

We had our OT eval and had started both speech and OT and the PLAY project. We were on a serious mission. I was also 8 months pregnant at this time. I often wondered if I would have gotten pregnant had I truly suspected how much time and effort and therapy my son would need. The day of his first birthday party that I had been crying was also the day I announced my pregnancy. It was a roller coaster year.

We have switched therapists and dropped out of play but our current speech therapist and OT are both PLAY trained and are so amazing I credit them for much of our progress. The first therapists were also wonderful but we became stagnant and so we moved on. We also take a social speech class with two other boys. My son has made such drastic and wonderful progress that I can’t believe how lucky we are. It was clear that regardless of the diagnosis we needed to intervene. I always say call it tacos or call it shoes but regardless the treatment is the same. My son’s receptive language is coming along wonderfully and his expressive is moving right along as well. He now uses Mama and Dada with intent, says no, more, animal names and sounds, ball, and several other words with intent.

When we went for our re-check 5 months after our initial appointment with the top developmental pediatrician, he stated that we could not have asked for better results and that whatever we were doing, to keep it up. He said we should be so proud and that our son had made 12 months of progress in 5 months.

We did decide to contact the schools again because it is likely that the insurance visits will run out and it’s too much money out of pocket so while I am appealing to my insurance company to increase our allowed amount of appointments, I also know that by not utilizing the schools I am leaving 2.5 hours of free therapy on the table each week. I don’t love disclosing our information  to the school district if it is temporary but they have assured me that this is just the early intervention program and says nothing for his future. I look forward to the day when someone asks me which of my kids was delayed and I say "try to guess".

(here is where I bounce back to not editing so even though he is 4 now I wrote much of this a long time ago)

My son is 26 months now and we went back for a quick check in this week. It was 3 months since the last so not as drastic as the first set of changes but more complex changes and a wonderful review still. The doctor told me that I couldn’t ask for more than great to excellent which is where we are. He was shocked and thrilled that my son already had language as he had told us at our first appointment that he would be pleased if he had language by the age of 3. I don’t cry except for tears of joy these days. I adore my son and tell him every night that he is the perfect son for me. He is sweet, and engaging and responsive and initiates and plays more appropriately and observes others and watches other kids and he is well on his way to being just a typical kid. He is exceptionally smart and has started counting and identifying letters but this we are told is sort of off the path but still a good skill for later once it is not just labeling. Just a regular old typical kid is all we could ever want and while we can’t predict the future it looks like we may just get this.