A Unique Point on the Spectrum

Autism is a Spectrum Disorder: Every Child will be at a Unique Point on the Spectrum 

It is stunning really to have a Day/Month dedicated to your daily struggle.”

April is World Autism Awareness Month. It is a month-long campaign dedicated to raising awareness about the high rate of Autism Spectrum Disorder (ASD) and explaining how everyone can get involved to encourage early intervention and more funding. In addition to the educational value of this month long awareness campaign, it is also an opportunity to support all parents raising an autistic child. The uniqueness of each individual with ASD makes the journey for each child and family different.

Along with my desire to get involved in this ASD awareness campaign, I want to express my love, support and hope for children and parent’s of children with autism by sharing my personal conversation with Leslie Williams, my dearest friend. Leslie is a mother of three beautiful children—Hannah, Jake, and Noah.

Here is a snapshot of how Autism has impacted Leslie’s family, and the ongoing journey with her 4-year old son, Noah.

Denise:  To start, what are your thoughts and feelings surrounding “World Autistic Awareness Day/Month?”

Leslie:  It is stunning really to have a Day/Month dedicated to your daily struggle. Autism is unique in that there are no two kids with the same behaviors or the same limitations. Noah, like many other kids has sensory processing issues as well.

“Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.” http://www.spdfoundation.net/about-sensory-processing-disorder.html

This makes errands, soccer games, church, and any event where there is a crowd, stressful for him. I think that would be the one thing to stress– for the public to appreciate what these kids struggle with and to better understand when they have a neurological meltdown or don’t respond as expected. For example, a person with SPD (Sensory Processing Disorder) finds it difficult to process and act upon information received through various senses, which creates challenges in performing countless everyday tasks. Like when strangers approach Noah; he isn’t going to engage in a conversation. He can’t answer the, “How old are you little boy?” question directed at him, and as he gets older, these situations get even more difficult.  

 It’s difficult to explain a neurological deficiency. So, hopefully, the more awareness and understanding there is at large, perhaps the easier it will be to function in everyday situations. 

Denise:  Having two children prior to Noah, do you think there were mother instincts/wisdom in your early questions about Noah’s development?

Leslie:  No. Noah met every milestone and developmental marker until 18 months. He made eye contact, he laughed, and he had language. After about 18 months he slowly lost these abilities. Sadly, it kept coming back to, he is the third child and we are all catering to him. He will be fine. He knows the alphabet; he will talk when he wants to.

Brian, my husband, was the first to pick up on it.  Since I was with him all day, I think I was too close to the situation and didn’t see how far he had regressed. I didn’t know Autism could work that way. Since I was home with him I didn’t have any outside caregivers to raise any red flags. I think if Noah had been in a daycare situation it would have been clearer that he was falling behind. In fact, it was our effort to have him participate in our local Mothers Day Out program that indicated he couldn’t function with a group of eleven other almost 3 year olds. His behavioral issues became glaring at that point.  He wasn’t able to sit in a small group, he didn’t listen to instruction, and he couldn’t walk in a line from the classroom to the playground—all very simple, intuitive tasks for typical kids.

Denise:  I remember you sharing your disappointment and frustration in seeking the right path for Noah once he was diagnosed.  I know it took a lot of time, observation and trial and error. What route did your path take you?

LeslieThe journey from diagnosis to finding therapy for him was long and frustrating.  It takes months to first rule out any vision or hearing issues that may be the source of the issues. Then, you have to find a psychologist to diagnose your child. As soon as he turned 3, we began the process of getting him enrolled into the developmental delayed public pre-school (DD Pre-K) program in our hometown of Norman, Oklahoma.

I have to say, the speech therapist and the teacher at the school were my first support system. Both were first year teachers, which is remarkable to me when I reflect on their wisdom. The school’s speech therapist got me an assessment with special services and it was decided for the next school year Noah would transfer to an autism program in a different school. Slowly I worked out private speech therapy and occupational therapy for Noah.

Recently we have had to also add food therapy because of his severe aversion to food. Noah’s speech therapist, Sarah Baker (owner of the Baker Speech Clinic in Oklahoma City) attended training so we wouldn’t have to find yet another specialist to treat his food issues. When she offered to attend the training, which meant driving from Oklahoma City to Tennessee for a four-day seminar, I remember thinking  what a blessing it was to have finally found a dedicated health professional. I felt I had finally found my ally in helping me steer Noah’s treatment. 

I did expect more guidance and involvement from Noah’s pediatrician. But instead, I got lucky in finding the best person for his speech therapy through a referral from another mom in Noah’s first DD Pre-K.

 I was so excited to see him stringing the beads on the pipe cleaner, and then using the latch assist scissors from the Pre-K Success Fine Motor Skills Kit, all by himself!”

 

Denise:  What does a typical day of preschool look like for Noah?

Leslie:  Currently his public pre-school is priceless. (The private options for school don’t exist in our town. The closest school offering ABA therapy (specific therapy for Autistic children) is 30 miles away and $20,000 a year.) Noah’s DD Pre-K is five days, three hours a day at the public school. His class is small and he functions well in circle time and walking through the halls, etc.. All of his teachers do such a wonderful job of encouraging and motivating him.

Noah’s one-to-one time spent in Speech Therapy and Occupational Therapy at his public DD Pre-K School is limited; therefore, Noah also has additional private appointments after school. While at OT, after school, he primarily works on listening therapy developed by Sheila Frick and Jean Ayres.  (www.sensationalkidsot.com.au.therapeuticlistening.htm) He then has additional Speech Therapy with Sarah Baker on other days, along with the above mentioned food therapy (S.O.S. therapy developed by Kay Toomey, Ph.D.) once a week. Some days are long and exhausting, and do not feel very “typical.”

The weekends are more relaxing. We have fun on the trampoline and play-set outside working on motor skills. In the summer, Noah “swims” everyday. I read another mom’s comment that she loved to watch her Autistic daughters swim because they appeared typical. This is true for Noah.

 Hannah, Jake and Noah

 

Denise:  What does a typical day or week look like for your family? What can all parents take away from your experiences?

Leslie I am not sure the average person knows what Autism really means for a family. I have a typical 14-year old daughter, and a 9-year old son who are very active in sports, music and school functions. And I have a typical husband who works many hours away from home. As I mentioned, there are a lot of appointments, as well as different schedules and individual needs. In addition to all that, I work with Noah a lot at home in order to reinforce all of the skills his teachers and therapists are working so hard with him to perfect. 

Initially, our daily communication focused around using the PECs (Picture Exchange Communication) method. It puts communication in picture form and allows the child to show you a picture when they are unable to say the words. Slowly, Noah has been able to verbalize more and we don’t need the pictures as often for simple communication. It is helpful to keep our pictures handy for morning and evening schedules. I also use them for introducing something new, i.e. potty training.

I push him as much as he will allow everyday. We are currently working on potty training for the 4th time, and how to recognize a question and answer it. He is currently learning to answer, “Yes” or “No.” It’s that basic, it requires a lot of energy and diligence.  

It took almost a year to say, “My son has Autism.” It is a life-changing diagnosis. No one can tell you how far he can go, how he will interact with his family, how much language he will develop…. Every morning when I wake his beautiful face up, I say a silent prayer for him to say, “Good morning momma.”  

I have no limitations set for Noah. I push him at every turn. I expect success. It’s so rewarding to see his progress. For example, when he doesn’t just echo what you say, but has his own words to express himself!  Hope carries me through the rough days.

I am not sure what parents can learn from my personal experience… always HOPE, learn ways to work with your child, read books that attempt to answer your questions, and utilize other people’s wisdom… these things have helped me on this journey.

I worry for Noah every day. I pray each situation isn’t too stressful for him. And, there doesn’t seem to be enough time to call friends I should. I want them to know, I appreciate when they do call.

 

For more information about Autism and how to get a free copy of The Autism Speaks 100 Day Kit, click here.  

 

 

 

5 Responses to A Unique Point on the Spectrum

  1. I love this blog! And, I think having a month dedicated to Autism Awareness is absolutely wonderful, but I think there should also be some recognition for the entire year for promoting the awareness. The prevailing issues in services provided seems to be not only nationwide, but also worldwide. My daughter received services through the Early Intervention program, starting when she was 15/16 months old. Then, she was officially diagnosed with Autism Spectrum Disorder (ASD) at 18 months of age. She is now 15-1/2 years old, so that means we have been on this autism journey for 14 years – which those years put us through so much struggle and anguish in navigating through the everso not “family-friendly” mental health and special education system. Annamae did suffer terribly as a result.

    My personal message and advice to newly diagnosed families is to keep yourself informed (medical issues as well as school/educational matters), be persistent in getting the needs of your child(ren) met (do NOT allow the system to bully you), seek support from others (get professional advocacy & legal help, if needed and find other families you can advice from) and most of all – BELIEVE in yourself as a parent(s) & have FAITH in your child(ren). Don’t give up on yourself or your children!

    I will attest that this has been a tremendously rough journey for Annamae & me. But, as of about 6 months ago things have been going relatively well. This is not to say that all issues and problems have resolved or been extinguished – as Annamae’s diagnosis has not disappeared – just that she has changed and improved alot as she has gotten older. Also, we have finally started receiving adequate services with homestaffing at home and the autism school program (she has been in for the last 4 years) is doing well with her. We have finally persevered through the stormy frenzy.

    Again, don’t give up! We need to keep our persistence that our angels be provided with what is needed.

    • admin says:

      Joyce, thank you for this encouraging response! Because every journey is unique, your advice about staying informed and being persistent in getting the help your child needs is spot on. Navigating the mental health and special education systems can be discouraging. I agree with your comment, “Don’t give up on yourself or your children” and to trust yourself as a Mom. It sounds like your efforts and love for Annamae over the last 14 years has positively impacted Annamae’s present success. I admire your determination and perseverance. Again, thank you for sharing your personal story. ~Denise

  2. Thank you Denise for posting such a touching and moving article. It is always so uplifting to read about other Autism families, their struggles and their success.

    I also have a child with severe Autism. Morgan is 10 years old, very low functioning, non-verbal and suffers from debilitating Epilepsy. Life can be very difficult especially in those times where it seems that every step our child takes forward, she takes two steps back. But she keeps chugging along – she tries so hard and applies every part of her being into what she is trying to do. She teaches me not to give up and to truly apply myself in all things. The way she sees the world and the wonder and innocence in her eyes brings me to tears often. She truly is my special girl and holds a very special place in my heart.

    To all the newly diagnosed moms – the diagnosis gets easier, the way we think and deal with the world changes drastically, we grow differently and we truly understand the meaning of putting our children first and foremost. we grow confident and know exactly what our child needs or not regardless of what we are told and are strong enough to do it our way. We become advocates that not only benefits our children but others as well. We learn to bring information and comfort to those around us who are lost and not sure what steps to take with their children on the spectrum. We learn to share our stories with those who need to hear them. It becomes our responsibility to correct ignorance and bring about Autism Awareness and we do it. So keep your chin up and hang in there.

    ~Christina

    • admin says:

      Christina, Your heart and effort to bring information and comfort to other families is remarkable! I can see how you and Morgan are a blessing to each other. Your Facebook page you created is a great place for people to learn, share and debate controversial issues. Thank you for sharing this very encouraging comment. ~Denise

    • Leslie says:

      Thank you for sharing your story and encouraging words. Since this post, Noah continues to progress more than he regresses, which seems to be the daily goal. We recently overcame his food aversions. He had only been eating popcorn, chips, Cheerios and liquid drinks (muscle milk). We did a week long intensive food therapy regime with a BCBA trained therapist. Our previous efforts to do S.O.S. food therapy were unsuccessful. It was a grueling and painful week. Noah is on the therapist Top 5 most difficult clients, but he made it through and I almost weep thinking of how hard he tried and what success he now has with food. I have this same hope with school as I have hope he can integrate with his peers. He is an inspiration to me as Morgan is for you.

      Thank you Denise for getting these stories out and helping the rest of the world appreciate how hard the simple tasks are for our sweet children! Leslie

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