At the time of Sadie’s birth, Micah and I were just so happy and terrified in the normal way first time parents get. For me there weren’t any red flags, that is until I had my second child whose birth was easy peasy in comparison. These are the things that stick out. It’s like looking at one of those Highlight magazine pages where you have to pick out the things that are wrong with the picture. First off, we were put in a hospital room that was not equipped for labor. It was a full night in labor and delivery and the staff figured the young first time mom was going to have the longest labor. The nurses coming in and out kept joking that I got the put in the “broom closet”. We were told that as soon as a labor room was open I would be transferred. For what ever reason I was never transferred. After about 10 hours of labor Sadie was born. She had aspirated meconium and had to be rushed out of the room because there wasn’t any of the normal equipment in “the broom” closet. This is the part I play over in my mind all the time. When Bro was born they sucked the meconium out of him as he was being pulled out. Maybe too much time passed before Sadie could breath. No one raised any alarm about it, no one was concerned. None of this was documented in her charts. I wouldn’t even give this a second thought until I would be in a neurologists office 3 years later.
In the hospital Sadie appeared to latch but she wasn’t really sucking. Nurses just said to give it time. I had heard that sometimes babies don’t latch. We took our beautiful baby girl home. I was exhausted but determined to get my baby to nurse. A couple days later my milk still wasn’t coming in and Sadie wasn’t helping so I went to the lactation specialist and she hooked me up with the “shield system “ Anyhow, I could only handle that for about four months then she was switched to a bottle. Micah was constantly poking extra holes in the bottle nipples because it would take her nearly an hour and a half to finish a little bottle and half the time she would fall asleep before she could finish. It never occurred to us that she had an oral motor problem. Remember first time parents here.
By the time she was 9 months she was the cutest little cabbage patched cheeked baby you had ever seen. She was sitting up but not really getting around. She wouldn’t respond to her name or care if mommy left the room. She wouldn’t cry when she was hungry or wet, or even cry to get out of her crib . I thought I just had a really good baby. I fed and changed her on a schedule . I really thought (and I’m embarrassed to say this) that since I had this “clockwork schedule” that I must be catching her right before she’s getting uncomfortable or hungry, what a great job I’m doing right?!
12 months was approaching and around that time the word “autism” was all a buzz. Sadie had just learned to have a functional crawl. She didn’t have any words. She would react when she saw our cat. She would laugh and smile when you held her and and made silly noises in her face. That was about it as far as interaction. Not terrible but not great. She still didn’t react to us when we called her name or entered the room and came into view. At her 1 year check up I shared my concerns with the doctor. He just went through his check list.
ped:How many steps is she taking?
ped:How many words does she have?
me: Um she makes noises I think she tries to say cat?
ped:How many noises? Like 10?
me:Um I don’t know if there really words
ped: If you ask her will she take her diaper to the trash can?
me: What!? No! I just said she doesn't walk yet. Is she supposed to do that?
The pediatrician then walked her around slowly holding both her hands up. He continued to tell me that many children take a little while longer to walk and not to worry. I then reiterated my concerns with her interaction with us and asked if she could be autistic.
me: Shouldn’t I be worried if she doesn’t answer to her name? Should I be worried about Autism
ped: Everyone is worried about autism these days. Most the time it’s just that the mom isn’t connecting very well with the child. (ya he really said that) I don’t think that's the case with you so lets just run a thyroid test and a hearing test.
I left that day kind of relieved . Relieved that maybe my child just had a hearing problem. I went home, I banged pots and pans and yelled Sadie’s name at the top of my lungs. No reaction. Good my child is deaf, that’s way better then Autistic. Silly me.
When the audiologist at the Children’s hospital told me that Sadie had perfect hearing she probably wondered why this mother would start sobbing at this good news. I was devastated. An implant could help Sadie if she was deaf or hard of hearing, but how will I help my child if she has autism? I called my doctor, he told me that I should give Sadie 6 months and we will see how she’s doing at her 18 month check up. Yeah ,thanks buddy. I think if I my mind wasn’t reeling over other things I would have quite him then and there. Please remember “first time mom” here.
At a church craft night I heard a mom talking about her child’s food allergies. I remembered hearing something about food allergies being connected with autism and I sheepishly asked her about it. Her child has sever ADD but she told me that her neighbor who just moved really far away had an autistic son. She said she would give her my number. The very next day this complete stranger gave me a ring. She asked me questions about my daughter and relayed her similar experience with her son. She gave me the number for our states Early Intervention Program. I don’t know what I would have done without this mother. She was so willing to help me. She even made check up calls to make sure everything was going ok. She saw a mom going through the same mystic dark tunnel she had to go through and wanted to guide me through it. Thank heavens for Jan.
Soon after Sadie was tested by the Inland Regional Center and was found to be on the Autism Spectrum with sever global delays (you don’t get “the diagnosis” until your 3). She immediately started in ABA, Physical Therapy, Speech, and Occupational Therapy. I was all consumed with helping Sadie. After the shock of it all Micah and I decided we should probably not have anymore children and put all our efforts into helping Sadie. As fate would have it, it was too late to make that call and I soon found out I was pregnant with Bro. I think I was an emotional wreck for two months straight. It’s sounds awful but it took me a while to find joy in this pregnancy. I was just worried. Worried that we were taking away from Sadie who needed us so much and worried that this baby might have autism too. At some point I just decided that if Heavenly Father thought I could handle all this then I will and I must. Of course He also knew that I needed this sweet little boy and the only way to get him to me was in this surprise package.
It seemed to take forever just to get Sadie to care about anything. She was just always content to just “be”. I remember one day I sat for 4 hours until she would sign “all done” after being in her high chair. She never cared about getting down. I pulled out toys and put them on the ground infront of her and she could care less. It wasn’t until I opened the sliding glass door and filled up her water table that I got a reaction from her! She started to whimper a little. She wanted something! I let her down and the next day I tried again starting with the water table. It took 3 hours but she finally mimicked the sign for “all done”. That was the hugest breakthrough and since then I knew that if I could just figure her out we could get a little farther.
At first Neurologists would just tell me Sadie had “typical Autism”. She got the official diagnosis of “moderate Autism” when she was nearly 3. At that time Sadie started verbally communicating with us. You could hardly understand her but it happened. I remember when my prayers went from “please let her be able to point to the cereal she wants” to “please let her be able to tell me what she wants for breakfast”. From age 2 to 3 I went from laminating a million pecs cards to having her show me pictures of what she wanted on the ipod touch to her starting to tell me in a one word phrase what she wanted. It was the most exciting thing in the world. She started to come out of her shell. She gave me a name and although it was “Nie Nie” instead of “Mommy” she called me something and I knew then that she knew who I was.
Sadie still wasn’t walking independently. After many falls in preschool I was able to get insurance to cover a walker. She was soon after diagnosed with Cerebral Palsy in addition to Autism. Our 3rd Neurologist said that it was most likely because she aspirated meconium and she went to long without breathing. I had never thought twice about that since no one in the hospital made a big deal about it. So many doctors looked at her tip toeing and behaviors together as Autism. It was only her physical therapists that kept telling me it was something more. As time goes on Sadie keeps getting tighter in her lower legs and the weakness in her upper legs stays the same. We started doing Botox injections and then serial casting to loosen the muscles. It worked the first couple times but it’s temporary and she has become immune to it now. She will most likely have many surgeries to come. Physically we are still searching for answers on what to do for her.
Since age 4 Sadie has made leaps and bounds. I feel like every 6 months I am getting to know a new little girl. Her speech is far more intelligible now. Her little mouth muscles just could not form sounds for so long. Getting her to drink from a straw was a triumph in itself. Our sweet little Bro has been the most influential on her. He caught up to Sadie developmentally pretty quick. By the time he was 2 Sadie at age 4 was like a 2 year old in the way she communicated and played so they were perfect playmates. He has caught on to what stresses her out and will use it to his advantage but sometimes I see him trying to calm her down with the same phrases I use and it melts my heart. Sadie is 5 now. At first glance she acts like a typical child. After spending a few minutes with her you’ll realize that she still has a mound of inflexibilities and social quirks we are trying to work through. Like any child her behaviors spike when she’s tired. So just imagine having an autistic kiddo with a condition that always makes her tired. That part isn’t so fun. We were able to get her in a typical kindergarten class with a one on one aid. When I drop off Sadie at school she is practically running to her class in her walker, happy as a clam. At the end of the day I pick up a slouchy sleepy girl in a wheelchair.We still spend many hours in therapies but it’s helping her so I will keep on doing it. I have no idea what the future holds for her. But like many wise mothers of special needs children say “avoid thinking about the future too much, it’s too uncertain”. I just know I will absolutely do all I can right now so that maybe she can have an independent life someday and if not I just hope I can look back and know I did all I could to help her. I feel so blessed that Sadie is doing so well. I know I am lucky. I know there are others who have it so much worse then I do, but I just wanted to share our story. I wanted to share our hope. I have been told that even though Sadie has gotten better it just means I am that much more responsible for making sure that she reaches her full potential and I am determined to do just that.
If you would like to read my posts from when I first realized something was wrong with Sadie click here.