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Since April is Autism awareness month, I wanted to share with you my goddaughters story. She is diagnosed as autistic and also has a sensory disorder. She is a sweet happy girl who just needs some extra attention that her parents do an amazing job with.

My friend had mentioned to me about April being about autism and so she asked if I would like to share their story. I thought it would be a fabulous idea and so here we are. My friend Tammy was nice enough to put this all together for me in hopes that their story would help others to be aware of the signs and how to deal with the disease.

Tammy’s story about her daughter

Let me start by saying Daniella with all her challenges has made me a better person and parent. I wouldn’t change her for the world. She’s very special and makes everyone smile. 

An Autism diagnosis can be overwhelming. Especially since it’s rarely a singular diagnosis. Over 90% of children diagnosed with Autism also have SPD ( Sensory processing disorder- ncbi.nlm.nih.gov) Every child is different, every diagnosis is different. 

She was born on Dec 18 2013 and she was colic for the first 3 months of her life. By the time she was 6 months old she was the happiest baby I had ever met. I rarely had an issue with her sleeping. Eating was a challenge as she got older and still is. Looking back I did notice that she was very rough and loved to bounce constantly. I utilized music as a calming influence at the age of 4 months. Baby Einsteins and later Little Einsteins are just a couple of programs that worked for me. Now any kind of music helps to calm her. 

Some noises bothered her and I invested in noise reduction headphones at an early age. Daniella was always yelling and screeching. She was always ahead of her mile stones and I knew she was smart. She would get easily frustrated and bang her head on the wall or floor. I had to have my mother crochet special cover for her crib too. She would bite her wooden crib so bad I would find wood in her mouth. Everything goes in her mouth. Even now she uses a chewy when she feels like she needs to chew. If she doesn’t have it she chews on her tongue and sometimes makes it bleed.

Back to her crib, her bouncing was so out of control she actually broke her crib. I realize early on that she had a really hard time self soothing. I had to make sure I intervened before she would get to the point of no return. That was never fun. If she got to that dreaded point she hyperventilate and eventually throw up. Needless to say “just letting her cry” was not something we could do.

As she got older her vocabulary increased but she spoke so fast it was difficult to understand her. Still constantly jumping, running and spinning. I assumed she was just a really happy active kid. My son was hyper so I figured I had this under control. Most of the time I did. But I couldn’t leave her at the day care at the gym or just go to the park where other kids where.

When she did pay attention to them she would be too rough, even violent. She never seemed to understand that her actions were not ok. My husband finally convinced me to enroll her in Pre-School at a local place that he was affiliated with through work. The thought being that she needed more exposure to children her own age. 

The teachers at this school where amazing and saw the red flags that we as parents missed. I am still to this day so grateful for their support. They pointed me in the right direction and over the next year or so she was placed into an Occupational and Speech therapy company with Therapist that really focussed on her SPD. They also recommended we have further testing done.

My pediatrician was a great source of support as well. Once we had all her diagnosis in place we were able to go through the process of getting her an IEP (Individualized Education Plan). Now she is in an amazing program through the Lynn public school district called the Coach Program. She’s in Pre-K currently. Dani does still struggle socially but she is learning everyday. She is starting to form bonds. She has no social anxiety but does have social indifference. That basically means she really doesn’t crave companionship.

The Coach program runs all through the summer as well so she keeps her same routine which is essential. The plan is to transition her into Kindergarten in September. She is more than ready academically but socially she still has a long way to go. During school vacations she goes to another program at The REC (Recreational Education Center) in Lynn. Its an amazing program very similar to the Coach program. It was developed by the same person. 

We still have our challenges. Even with the programs and therapy in place it’s a day by day struggle for Daniella to keep her body calm. Sometimes it’s so bad she can’t even finish a sentence. It breaks my heart. Her pediatrician proposed that we try a medication called Guanfacine. It’s a blood pressure medication that has been tested and shown to help children with Autism and SPD.

The fact that Dr. Gast has used this medication on other patients including her own son with great success put some of my concerns to rest. I did, of course, do my research. I was nervous about putting her a medication. Side effects for children can be hard, changing their appetite or turning them into a zoombie. The Dr reassured me that this medication had only 1 real side effect, drowsiness, and it didn’t last long. We started her on a low dose, 1.5mg and increased every month till we noticed a difference in her behavior. Once we find the right dose we will just monitor her blood pressure.

At this point Dani takes 4mg and although it’s only been a week, I think this is her perfect dose. The medicine didn’t effect her appetite at all. Eating is a constant struggling. Food has to be just right. A certain color of texture. A specific brand or season, for example she will only eat Watermelon in the summer. She’s 5 years old now and she reads at a first grade level. She also does multiplication and math word problems. She’s cuddly and loving. She has empathy, but not like a child without Autism. I like to describe it as logical empathy. Love isn’t something she lacks for or has a hard time feeling and giving. She is considered mild on the spectrum. I know she’s going to grow into an amazing young woman.

To conclude I’d like to list some of the organizations that have helped me:

First and foremost, my biggest supporter and partner, my husband Joe. I can’t stress enough that you and your child need a support system at home. 

Your pediatrician should also be supportive. If you are not receiving the support you need, emotionally or medically than find another Dr.

I live in MA so these are the places around me that helped tremendously along the way.

1) OTA in Wakefield MA ( also have a location in Kingston MA – OTAkids.com)

2) The REC in Peabody MA ( also have a location in Londonderry NH – recreationaleducationcenter.com)

3) North Shore Medical Center floating hospital for Children

4) CARD ( Centerforautism.com)

Also, Autism Speaks is an amazing organization

http://funandfunction.com/

No matter where you live, your public school organization should be able to help.

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