INCREDIBLE HORIZONS 

7

Supporting pregnant autistic people 

Hope's Journey

Knowing that I would have all the nervousness of being a first time mom and to have to simultaneously find my tribe for raising a special needs child seemed... challenging even at my best moments. I didn’t have all the answers, and I wasn’t sure I had the bandwidth to parent each of her special needs as the come along as she grew. Each new day came and went as I researched and learned more and more. I wanted so desperatly to understand everything she could possibly be born with or encounter in her life.
It seemed like everything thing in my life before this point was going to be what fortified me for the journey ahead.

The unknown was scary, and there’s nothing you can do to predict the future. Knowing that a baby with needs beyond what is normal at the outset of motherhood made my mind race at night. I was always questioning if I was prepared for that. The process of adding a special little one to your family brings out a lot of questions and even some anxieties and fears. Though moms are expected to be superhuman , you’re still human. And it’s OK to feel scared. 

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Supporting pregnant autistic people

I had the heads up that Hope was going to have some special needs was a huge advantage. But I was as prepared as I could be educationally and professionally. So that was two things that I had. The third thing I had was that I knew that my husband was going to be the sweetest dad ever.

Truthfully, as I look back on it, that was my very best and most important asset.

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Hope was spinning with energy and curiosity at a very young age. 

Everything that I was experiencing as a mom was different than I expected after Hope was born. She vomited every time that iwe put her in a baby swing. Her body was more stiff than other mushy babies. It made me feel like something was hurting her.  My husbands grandma was the biggest help ever. We put all her baby clothes through the wash and dried them until they were super soft- expecially where the in seams were . Grandma sugested shopping at Salvation Army to get broken in and really soft loose clothes. No cute onsies, no t-shirts and loosen the diapers. Luckily she was born in June and by mid July she lived in just a diaper. And became a happier camper. 

She also challenged us with colic. Which Grandma could diagnose by listening to Hope crying when I was talking to her on the phone. She was right, the experts verified it.

And again Grandma's remedies worked better than the experts.

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Now, I studied a double major At Liberty University in Recreational Administration and Education so I was familiar with child development. I was working on my masters degree in counselling. I had been a foster parent, youth worker, group home leader, and a child care provider/supervisor and now I was finally a mother. And I felt totally inadequate...

However, somehow I knew that this a beautiful gift from God, was going to have some challenges along the way.
So bathed her with a constant flow of theraputic music (all day) and we gave her lots of loving and our undivided attention when she was awake. She loved floortime play and I talked to her almost constantly about what we were doing and all the things that I looked forward to doing with her. Her dad had her in his hands or in the portble bassinette beside him as soon as he got home...which freed me to do the household chores and cooking.

As soon as she became interactive, I noticed (fairly quickly) that the music relaxed and inspired her. She was more playful and creative when music was being played. She also listened to reggae like from Dragon Tales, Children’s music, Beach Boys, classical and just about anything that was cheerful and upbeat. Her first favorite music CD, Mozart Effect for Children-Relax, Day Dream and Drawwas ironically produced the year she was born... 

I was working on my masters degree in counseling with a thesis on the benifits of theraputic music, which drew me into reseach Tomatis theories but most of his work was still in French. Dr. Ron Minson practiced Tomatis Therapy in Denver. So I asked for his help. The next thing I knew,  Hope became one of the early participants of The Listening Program and just loved to try all their music
and programs as they were developed. Their Music for Babies let me draw her into sleepy mode, happy playful mode, and peaceful creativity mode by using the tempo and certain sections of music notes.
AHHHHHH, what a relief.

Therapeutic music settled her mind and body  to the point that she almost craved artistic uses of common things.  We finger painted and played in regular spreadable items from the kitchen-like baby food of different colors, rice cereal, whipped cream, pudding, yogurt, applesauce, frosting, Jello (not fully set or made with extra water), ice cream or even snow etc. Even dry ingredients like oatmeal, rice, flour etc on a cookie tray or plate became entertaining.

If I was in the kitchen she was creating there. Whatever I was using became exploratory art for her.  

Play dough  in our house was sugar cookie dough, bread dough or pie dough. We flavored and colored just about anything with Jello, Kool-aide or food coloring if she wanted color or flavor. She also loved a very simple peanut butter play dough  recipe that I picked up from working at the YMCA.It was 1 cup of flour, 1 cup of peanut butter

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- I don’t think I will ever forget that one because we used it so much. Most of her early crafts were things that Hope and I thought up spontaneously as we put household items together. She became a tenacious toddler that loved to be creative and explore her world. 

She was one of the early participants of The Listening Program and just loved all their music and programs as they were developed.
Everything in her world seemed to become a creative opportunity. 

Sometimes I just had to go where she was emotionally that day. That meant that she was guiding me not me guiding her or planning her days. On her better days, I had her choose from 2-3 activities that I had prepped.  Some days she was a sensory seeker and others she was a sensory avoider. She seldom wore anything more that a diaper so she could get messy anytime. She enjoyed that. Like one day she was tearing up paper into little pieces and having a ball. I saw some clear contact paper on the shelf and… WA LA we had an art project. She made her first collage when she was sooooo little.

Another morning as a toddler, she was exploring what things she could paint and discovering that paint did not stick to everything.  She glued them to a piece of paper so she wouldn't forget what objects that she could paint for future projects. To extend her interest, I happened to remember buying some extra Easter egg coloring kits so we had another artistic process to test. We played for awhile just putting those things in the dye to see if the color actually dyed the same items or if it just rolled off them like a plastic spoon. The most interesting one was seashells- they took to a lot of egg coloring techniques just like the eggs did. As expected the red came out the brightest and the others looked mostly pastel colored. The other dying methods worked the same as eggs. 

I always made Hope feel like she was exploring or discovering something and she would engage easily. I now call it Hopeful Art, because it was always like a STEAM experiment.

Stamping is one of my favorite crafts that anyone can do. In designing her room we sponge painted  the border between two colors. So I had them, lots of them to use too.  Hope needed to have her hands busy most of the time so it was quick, easy and she ended up with a project to be proud of. Another early art supply was HUGE stencils – The really big ones....like she could peek through the holes and we could see most of her face. We used the cutout to paint around and the outer stencil to give her projects shape. The Wilton 101 cookie cutters were not only used for play-dough tools: she dipped them in paint on a plate and used them as a stamp too.

Music inspired artwork became a tool to help her develop appropriate sensory integration. Toys were purchased specifically for the sensory skills she needed. Therapeutic music was researched to aide in Auditory Processing Deficits and sensory processing. That is when we met with Dr, Ron Minson and learned about Advanced Brain Technologies music and The Listening Program (TLP).

There are so many skills that Hope acquired at a much quicker rate when she was on the The Listening Program. I could do the program with her at home with her while she was doing an art project. She loved her listening time every day.

At Age 3 1/2- Hope was diagnosed with PDD NOS-with Auditory processing disorder-Sensory processing Disorder-Visual processing deficits- and low fine motor strength and control- 

Occupational therapy became a must. 

I appreciated all their help and suggestions and they introduced me to How does your engine run? (or the Alert Pregram) The program helped me understand her so much better.

Advanced Brain Technologies also had a big collection of music that slipped right into her moods and life. Her favorite CD to listen to became the one  that Advanced Brain Technologies had customized for people with sensory integration issues. 

It not only helped her be more playful and creative in order to connect with the world and people around her, it helped her coordination and improved her cognitive skills. Because of the high percentage of visual skills stemming from the auditory system, some of the visual system started to create stronger neuropathways as well.

To me both the special needs child and the “normal” child could benefit from The Listening Program because of its many benefits. I cannot imagine what our lives would be like without ABT music and The Listening Program. 
 We became an authorized provider in 2003 and started a website with research on various special needs that doctors were not even prepared for in medical school. The original Incredible Horizons website was used by therapist and physicians all over to refer their parents to for information and solutions like what we used for Hope.

At 4 years old she had her first eye exam. Found out that her eyes would never work together and so reading and writing would be difficult to impossible. She got special glasses to help her see better but still struggled because they just too magnified. So the doctor reperscribed them at half strength for a few months. then upped them to what she needed. But as everyone knows, glasses do not improve Dyslexia. 

 The summer before Hope went you kindergarten was really stressful for me. I was so concerned that they wouldn’t understand her challenges or know how to help her learn. I was afraid she wasn’t ready for the discipline of a classroom. Her sensory and social skills were still behind so I was afraid she would be labeled disruptive. Somehow we made it through many struggles during elementary school with Montessori and Charter Schools. 

She loved her listening to music time every day.  Advanced Brain Technologies  had a big collection of music (Sound Health SeriesMusic for BabiesMusic for the Mind, and Healing at the Speed of Soundthat slipped right into her moods and life. Her favorite CD to listen to became the one  that Advanced Brain Technologies had customized for people with sensory integration issues. 

It not only helped her be more playful and creative in order to connect with the world and people around her, it helped her coordination and improved her cognitive skills. Because of the high percentage of visual skills stemming from the auditory system, some of the visual system started to create stronger neuro-pathways as well... 

Never in a million years would I have believed that the child that I had then, would conquer all that she has with the power of The Listening Program(TLP).  No one would have ever thought that by the time that she entered high school that she would have earned a scholarship for half of her college tuition or have a modeling contract. 

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To me it’s a no brainer, TLP is worth the try.

 At the age of 19, and despite all the skills we had to work really hard for, she was preparing to have a career in office administration. And she hoped to used her graphic design interest as much as possible.  Her tenacity in learning new things had paid off. 

We all believe that it is the program  that changed everything for her. When Alexander Doman, the owner and CEO of Advanced Brain Technology, asked her to provide artistic input to tell what TLP did for her, what she would use. She decided to use a bridge, because TLP connected her to the ability to  change her life and her destiny.
 And their Sleep Program was marketed with a bridge  at night. 

We were so fortunate to have the tools to help her develop beyond what we ever expected. Hope is very passionate about her desire to help create a world in which the arts and music are universally accessible for all special needs people as well.  We don't want anyone to miss out on the opportunity to create art while listening to therapeutic music, because it has made such an impact on her. 

In September 2016- We learned that she did very well when she tested for military service in Job Corp. She became an Alpha candidate for all branches of military.  Her high scores in technology careers allows her to be choosy in what she wants to train in rather than them assigning her a trade. 

Now in 2023, she is preparing to be a mom. No doubt, she will conquer this challenge in the same way that she did everything else. Now she can not only use the tools that we used for her, she will use the updated versions...
knowing what it was like to use them as a child.

Bonus for the baby!!!

And now, it will be me thats the grandma... And I am so happy and proud to be Hope's mom. 

Superscript

Supporting pregnant autistic people

Published on 06 October 2022

Author: Diane Fox

Diane Fox is an autistic midwife and researcher. She is Vice Chair of the Maternity Autism Research Group (MARG), working together to improve autistic experiences in maternity care.  Here Diane outlines some of the difficulties autistic people experience during pregnancy, and how best to support them. 

It is important to raise awareness, acceptance and understanding of autistic people in maternity care provision to improve health outcomes and address inequalities. Current research is exploring autistic people’s parenthood and how health professionals can improve provision. Does your maternity provision have an autism policy/guidance or embedded practice? Let’s explore some of the challenges autistic pregnant people can experience, and best practice to provide appropriate support. 

According to research by McCrossin (2022) 80% of autistic women are not diagnosed by the time they turn 18 – they may ‘mask’ or hide their needs during childhood and adulthood. As a result, many in pregnancy may not have a diagnosis or support in place, leading to health inequalities that affect physical and psychological wellbeing. 

Pregnancy can be a time when autistic people need extra support. Therefore, health professionals should understand the possible issues an autistic person may experience, knowing that each individual has different needs. Best practice is for a comprehensive Personal Care Plan (PCP) to be developed in partnership with the individual.

Challenges autistic people might experience

  • Sensory differences – sensitivity to sounds, light, taste, touch, personal space and eye contact.

  • Communication differences – such as a preference for clear, unambiguous language, or broken-down information. 

  • Anxiety – may be very anxious in an unfamiliar environment, or not knowing what to expect over an appointment, pregnancy or parenthood. 

If things become overwhelming this may result in a ‘shutdown’ or a ‘meltdown’. This can be very exhausting and lots of time and space will be needed to recover. Some autistic people may cope by not accessing treatment and care, which might be seen as non-compliance and can lead to health inequalities. 

Using the SPELL Framework

Structure

Having a predictable routine and environment can help autistic people feel calm, safe and in control with best practice such as having:

  • a predictable routine and environment

  • continuity of the same care team throughout

  • clear guidelines and processes to help manage expectations 

  • opportunities to meet staff and visit the ward prior to labour. 

Positivity

Be positive, kind and understanding, without bias or judgement – especially in new and challenging situations – such as labour, and establishing feeding and postnatal routines. Be supportive of the individual’s decisions, and take their lead. 

Empathy

Be empathic when communicating, and try to reduce anxiety and distress. Use questions such as ‘What do you need to feel ok?’. Also, be accepting of self-soothing behaviours and be accommodating of the individual’s sensory and communication preferences. 

Low arousal

Ensure a low arousal approach to reduce anxiety, for example use low lighting, and reduce sounds, with minimal small talk and interruptions.

Links

Help to create and maintain links to a support network – family, friends and professionals if needed. The individual may need extra support to adjust to parenthood. Ensure clear links and updates are in place with GPs and health visitors prior to discharge from maternity services. 

Other factors to consider

Staff should be aware of co-occurring conditions that autistic people may experience, such as:

  • hypermobility

  • ehlers danlos syndrome

  • fibromyalgia

  • attention deficit hyperactivity disorder ADHD

  • dyslexia, dyscalculia, dysgraphia, dyspraxia.

The autistic individual may also identify as non-binary or gender-fluid, therefore, staff should be conscious not to make assumptions about someone’s gender. 

Current research is exploring psychological and physiological issues that may affect autistic people in and after pregnancy. Some evidence suggests that autistic individuals may have a higher likelihood of experiencing:

  • health conditions which can affect pregnancy such as heavy menstrual periods and polycystic ovary syndrome (PCOS)

  • mental health conditions such as post-natal depression or anxiety.

More research is needed in this area, and findings should inform care provision and influence policy implementation to reflect best practice.

In conclusion, it should be noted that pregnant autistic people may have specific or additional medical and care needs, and comprehensive care planning is required. Linking possible care outcomes to care provision is crucial to understanding the extra support autistic people need. Therefore training, co-produced by autistic people, should be done in healthcare settings and in midwifery pre-registration training.  

The next step towards best practice would be for the development of national guidelines and local protocols in maternity services, alongside the creation of autism leads in maternity care. This will lead to improved health outcomes for autistic parents or parents to be, and their families. 

Further information

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