Parents With Children On The Autism Spectrum

Child With Autism – A Mothers Tale

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Imagine thinking that you were going to have a difficult time getting pregnant, or even thinking you could not get pregnant. Now imagine a crowded street, where the vendors’ food made my stomach twist and so emotional, that I ran to the hospital hoping I was sick but secretly hoping I was pregnant. I had miscarried, and I believe that I felt my very first heart break, right there on the hospital bed. While my neighbor on the other side of the room told me that I was young and it will be okay. As I lay there in despair, all I thought was MY BABY was not okay.

At 5 weeks, she had died and so my thought process stood the same, I could not get pregnant or hold my baby to term. I was 26 years old in October of the year 2012.

Not two months went by and I was extremely fatigue, all the time. I was not emotional as I was before, so I took the time and waited just a bit. When I two ClearBlue Rapid Detection Pregnancy Test (it had two inside each box), I waited til the morning to take them.

IT SAID POSITIVE, all four times. I did not know how I felt or what I should do. I do know that I was TERRIFIED. The father also had mixed emotions, but I just lost one and I was not going to give my gift up. I threw out my cigarettes and I went to work knowing that as soon as I could, I was going to see a doctor, because I KNEW my baby was okay this time.

I did not know that my son was going to be a child with autism and there are no tests to determine that before delievery. What I would love to do is explore and share my experiences with you. To show you how different and difficult it has been, but to also show the beauty and wonder of it all. Autism is a Challenge but it does not have to be the last defining factor.

The Beginning Of A New Beginning

When my son was almost two years old, he stopped building his vocabulary. Phases and words he has spoke before just cease to exist. They were simply gone as if he had never uttered them. He became less responsive, made less eye contact, and started exhibiting reclusive behaviors. I am going to be honest, other than the language factor, I did not know about the other behaviors and how they linked to any disability. I do not think many first mother can and I hope to build that awareness, even if it is just for one person.

At first, I thought it must be a phase; that he would snap out of it and everything would just go right back on track! I thought that we would pick up where we left off. I was so wrong because a week turned to months and I slowly came to realize that it was not a phase and I had to listen to his awesome pediatrician, who was pushing me every doctor visit to help with Early Intervention. At first, I resisted, it took a long time to come to terms with just the possibility that this was real and by then I was so very alone.

As the months passed by, I had to heed the advice of his doctor. He was not improving and I just gave up on the notion that nothing was wrong. I slowly came to the realization that my baby boy will have more disadvantages than the quote, unquote ‘norm’ and I pulled myself out from my denial that was built upon despair.

Every which way I moved left me feeling lost and questioning everything I did.

*Was I a good mom?

* Why did this have to happen to MY BABY?

* Why does my baby have to suffer?

Why this? Why that? I could go on about questions blowing a hole in my brain, but of course were no answers to any of the questions I had. So after I pulled myself from the depths of my despair, I braced myself, smile, and went with the flow. I took the referring paperwork given to me by his doctor and waited for that phone call.

All I know was that my baby will have it all. It did not matter how much blood, tears, or sweat came from my body. It did not matter if I had to fight everyone and anyone. That was when I realized the full extent of a mother’s love and support. With my sleeves rolled up and a start of a PLAN, I took his doctors advice and took him to Early Intervention.

Early Intervention

Early Intervention is a program that helps young children from birth to 3 years old, who are not learning, growing, playing, walking, or talking like the other children their age. Working with your family or guardians, they set meaningful goals for your child and create a service plan to help your child and family, meet those goals.

Steps In The Early Intervenion Process

*Identification or Referral:

Parent can refer their children for Early Intervention (EI), or a professional, like a pediatrician, may identify them as requiring services through Child Find. Contact your state’s EI program or early childhood disability services program, as not all states uses the term ‘early intervention’.

Tell an EI representative that you wish to refer your child for services. The EI representative may ask you questions about your child’s development. The representative, by law, must refer or decline your child for an evaluation within two days of your phone call. 

*Parental Consent Is Needed:

As a parent or guardian, a written consent to conduct evaluations and services are need. If there is any chance you wish to withdraw your consent, you can at any time.

As a parent, you must grant written consent for evaluations and services. At any time, you may withdraw this consent.

*Assessment

A team of qualified professionals will perform evaluations on your child. The evaluation team might consist of a neurologist, psychologist, physical therapist (PT), occupational therapist (OT), speech-language pathologist (SLP) or any other professional depending on the concerns of your child.

These professional are geared for working in these sensitive times, so do not worry if you think your child will undergo a variety of stressful tests. As it is a family-based approach, the professionals may ask to speak to you or family members with their permission.

As a mother, I was very impressed with how smoothly this step is. For the most part they observed and played with your child and evaluated during this time.

*Individualized Family Service Plan (IFSP)

If the evaluations determine that your child is eligible for services, you will meet with an Indiviualized Family Service Plan (IFSP) team. The IFSP is a written document that outlines your child areas of concern and detail services that your entire family can receive. It also gives your child goals for their development. You are part of the team of professionals and you will help develop the IFSP and your input is highly valued and impactful.

IFSP Review

The IFSP must be reviewed every six months to make any changes if needed. You may request an addition review when ever you feel the need to.

*Transition:

This stage begins before your child third birthday. The team may determine whether your child no longer needs these services. If your child must continue these services, then they will transition from IFSP to an individualized education programs (IEP) when they reach the age of three.

Final Thoughts

Even if I wanted to, I would not change my son for the world! Truth be told, it can be the most heartbreaking experience in a mother’s life and yet I can not think of Zach being any other way.

So do not be afraid of the unknown. Embrace it and know that you are NOT ALONE. Yes, your journey becomes more complicated and difficult and not many people you know or understand how hard this is going to be, but it will be okay. They are beautiful and WORTH it, so love them like they deserve and watch them FLOURISH!

***Please leave a comment and let’s start a discussion! Do you have any questions or concerns, would you like to add on to anything I wrote? Well then please, drop a line or two!!!

WITH MUCH LOVE

Brendaliz


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12 Comments

  1. Anthony Beatrice says:

    It is so nice that you wrote about something straight from the heart.  I hope that the program for autistic services have not been affected by the pandemic.  I can only imagine how tough it is for you, but you can make it magical as well.  There are a lot of children with autism, so you definitely not alone, I’m sure you know that by now.  I am uplifted by things of seen on tv that depict autistic people as been functional in society, some are even employed.  Thank you for writing this personal post with us, and making people aware of the services out there for autistic children.

    1. Brendaliz says:

      Thank you for your words! I am forever grateful for the amount of services given with this particular disability! I did not even know half the things they offered, such as Early Intervention!

      There is no autistic person who is just like another autistic person. That is why having and receiving this help is so important to them. The younger they start getting help, the easier it is to help them. So, thank you!

      Keep Being AMAZING 

  2. Sami says:

    When you become a mother, your whole life shifts.  I can’t begin to know how the responsibilities of needing to help your child with Autism weigh you down.  I do know that I think that you are doing what needs to be done and focusing on helping others with this sharing of how you and your little one were able to get on with life in this world.  

    Just as the COVID pandemic has shown countless parents that they really can homeschool their children, a child who needs things done a bit differently will show you what you can do.  You love your child and want them to have the best life possible.  Being able to figure out the ways you can help and have a positive effect on your child’s life and the times you just have to let things proceed.  

    Parenting is one of the things that not everyone is blessed to get to do, and often when and if we do get to be parents, we fall short.  Knowing all the ways I fell short and did not have the challenges or fears that Moms with children with identifiable issues, leave me feeling undeserving of being a parent.  Talking about your efforts will encourage other parents along your way.  This will give them ideas on dealing with issues within their life.  A great thing you are doing, and I think that as we learn more about your child struggles through your stories, we can all make a better life in the long run.

    1. Brendaliz says:

      You took my intentions right out my head, but I also do not want anyone to feel less than. Honestly, there were times I felt like I absolutely screwed up on this whole parenting thing myself. Every child is different, so for every child a parent must adjust to an individual, in my opinion. 

      Parenting is hard enough, and everyone has different ways to handle those times. Some things are harder then others and that’s okay. To me, it is okay to admit that we are not perfect and we do mess up from time to time. We learn even day!

      I do hope to help people along the way, while still on my own journey, and that lifts me up when I am down too! Thank you for all your words!! 

      Keep Being AMAZING 

  3. Trevor says:

    Your site brings back memories of my wife`s struggles to become pregnant.  In her case it was endometriosis and after three miscarriages she eventually gave birth to our two beautiful children.  A friend of mine however has a tale very similar to yours and now has two beautiful children who are both autistic. With love and care they are both developing into two wonderful young adults. My friend, Jon, like you is a strong parent (Dad) and he has provided his children with some amazing support.  Like you he is a strong parent, but I am copying that beautiful poem to share with him.

    You have a lovely site and you are clearly a dedicated Mom. I wish you every success with your site.

    I have a question that is meant well.  I have heard that spirulina might help children with autism.  I have also seen that there seems to be some controversy about spirulina with autistic children.  I mention, it just in case it helps. You might wish to look at this article for some initial thoughts and leads on it and to see whether it might help at all. whyspirulina (dot) com/natural-alternatives-for-mental-health-its-surprising/#more-3244 (PS deliberately left to the end so you can edit my comment so you can edit it not to include this point.  

    If however you like it, I would be interested in having a back link to your site from an autism article that I will write with regards to spirulina later (IF ITS EFFECTIVE for autism and I have NO evidence so far that it is) pm me via LatinNomad if you are. Have a great day, great Mom.

    1. Brendaliz says:

      Hello Trevor! 

      Your words were super supportive and I love hearing how both parents and children surpassed expectations and rise above their diagnosis! It fill me with such hope and respect! I am sure the hope of many parents out there, who feel hopeless will feel a sense of calm when reading your words!

      Thank you for all you wrote Trevor!

      Keep Being AMAZING 

  4. Will says:

    Thanks for sharing your heartbreaking story, and the journey you have come on with your son. There is so much useful and practical information here that will be invaluable to any parent whose child is experiencing autism. Like you say, any child, regardless of whether they have autism is beautiful and autistic kids can flourish just the same as any other. Please keep writing more of these articles, I’m sure they will help many people in a similar situation as you. 

    1. Brendaliz says:

      Thank you so much for taking the time for not only reading, but commenting on my story. My story can be heartbreaking, but I promise that as the story unfolds there will be quite the victories on the horizons also. 

      I do wish and am excited that the writing can translate the hardships but also the beauty of being a parent to a child with autism. 

      Thank you for showing me it does!

      Keep Being AMAZING 

  5. Sunny says:

    I share my compassion with you and all the moms and children out there. There should be no different and I am hoping that the world will re-open in a new habit, not even seeing a difference in autistic people in a way that hurts them . That all other kids will be educated so they don’t have a question mark above their head because they are “not allowed” to ask a question to or about their autistic friends. I am for unity. And I believe we are slowly getting there.

    Thank you for your article. 

    May you be blessed! 
    Sunny

    1. Brendaliz says:

      Yes! Unity is what I am aiming for! Just because a child needs to learn differently or more extensively, they are ultimately still children, with children emotions. 

      It is super important that we educate not only other children but also some parents too! I am grateful that awareness is growing and research is expanding! 

      Thank you for your kind words.

      Keep Being AMAZING 

  6. Jannette says:

    I can relate to your story of having a child with Autism. New parents think alike, as they do not want to listen to the doctor’s advice at a young age especially when your child is toddler age. The questions you asked yourself are common, as you think and asked yourself did you do something wrong during your pregnancy term and along with a good mother. It is important to get the assessments and have your child evaluated! I am going to share this article with my friends and family, to show them can get help and they are not alone.

    1. Brendaliz says:

      Heloo Jannette!

      I thank you very much in passing my article along! Yes, you are absolutely correct! Now that I look back, those questions plagued me from the very beginning, since hes speach left him! To have a doctor tell me something isn’t right left a war inside of me! 

      The assessments are super important because the faster they start putting children on a routine and having everyone is working together, there is no limit for our children! You want to give them the world!

      That is why creating this space, to tell parents that everything will be okay is super important to me. Helping through these times lifts my soul because I know what it feels like to be at a lost!

      I hope we speak again! 

      Keep Being AMAZING!

        

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