My #MomLife

My Journey as a Mother to a Special Needs Child

Me and my Pokemon Go bud Kaiden

I couldnt think of a better way to also start this blog and practice vulnerability than to share about the little guy who made me a mom 7 years ago.

Being a mother to a child with special needs is one of the most growth provoking journeys i have embarked on as a mom. I had to change my entire parenting style – (or what I thought parenting looked like) to accomodate my son’s needs. He also taught me all children arent the same and there is no linear parenting style that works for ALL children. The ultimate lesson was that just because how my mom raised me worked for her and I ended up okay – that didnt mean it work for me and my children.

Patience is key in general with children but you definitely have to increase your patience with a child with special needs. Every day is different even though they thrive off of routines. Alot of their behaviors that are seen as “bad behavior” or “disobedience” traditionally are actually beyond their control.

Alot of things my child has learned socially and emotionally is due to repetition. His therapist gave a visual example in a session once that its almost like there is a barrier blocking his brain from recieving every single intervention tool we were practicing with him and some things would take longer than others to ingest and understand.

We found posting visuals around the house in regard to social cues, using SEFEL’s Tucker the Turtle to teach him about social situations and responses, giving tons of praise to promote positive choices , and allowing him space to calm himself have really helped. Letting people be aware that Kaiden needs to warm up to folks and environments and invading his space was a trigger has helped those closer to us respond well too.

Focusing on the function of the behavior instead of the behavior itself was a major lesson for me. I would get SO frustrated especially with Kaiden’s ADHD behaviors , that it was hard to tell if he was being manipulative or not when he was simply being a child that had hyperactivity beyond his control – and I was the one who needed to change her thinking. This is when after research, we decided to switch to Gentle Parenting. It reduced the stress in general and he became more receptive that usual to things.

Yoga has also helped and also strengthens our bond because its something we both enjoy. Starting each day with a salutation and meditation to clear our minds and hearts for the day. Not to mention, yoga also teaches you the power of breathing and breathing correctly; which is a great tool for someone who is anxiously impulsive.

I had Kaiden in December of 2011 a few days shy of Christmas , and roughly 2.5 years later we found out he was on the Autism Spectrum, with an unspecified anxiety disorder; and possibly would later be diagnosed with ADHD. When he was 7 months old my mom suggested he may have some social delays but I brushed them off in offense that she thought something was wrong with my child. Instead I put him in the Infant & Toddlers program which actually did help with some of his language skills and motor skills.

By the time of his evaluation at almost 3 years old, he’d been asked to leave a daycare and I switched my beloved culinary career to a 9-5 county job. I was essentially on call to have to pick him up from the second daycare I placed him in because he was having that many challenges.

He was handsy, didnt speak much outside of “mom” and the basic first words most children have, he screamed and cried because he couldnt express or even recognize his emotions, he was disruptive, and lacked any type of a social and coping skill. I blamed myself – because I wondered had I put him into daycare at 8mo when I returned to work instead of at age 2.5 ; maybe things would be different. I felt bad I didnt heed my mother’s advice. Maybe I set him up to fail by him having limited social interaction the first few years of life. Everyone was telling me they had never met a child like him, their smiles were forced and their faces were tired as they told me they would work with him and try their best to accomodate. We’d called the state for in class behavioral intervention, I had apologized to atleast 7 parents for him not having helpful hands, his peers wanted playdates but the parents of course didnt- I was tired and nothing was working.

I thought again back to what my mother mentioned and we decided to go for the eval; where we learned he was high functioning but surely on the Autism spectrum and that he may possibly have ADHD. We immediately began behavior-psych family therapy ; I pulled him out of daycare and a family member watched him. I decided to put him in the Pre-K program at the local school because I felt he could take advantage of our county’s resources.

This was when I entered a warzone. The admin staff labeled him a “problem child” ; they suspended him 40 times ; I was always at the school sitting in his class; the institute he recieves therapies from equipped us with legal counsel and by the time he was essentially removed from the program due to us moving out of area (we know this was their golden ticket to not have to deal with us anymore) – he hated school and cried anytime he was dropped off. We ended up homeschooling for the duration of the year. I mention legal counsel because as I entered this experience I was totally green to my rights as a parent (that were never explained), no knowledge of what an IEP or 504 plan was and I wasn’t aware they were not accomodating my son and me to the BEST of their ability. In their eyes he was a Pre K student on a 2nd grade acamedic level so he didnt need any help.

I felt like my child was drowning, I was screaming for help and those with the life floats were looking at him saying “oh he’s fine.”

If I had a dollar for the amount of tears I have cried since 2013 I would be a millionare.

We transferred to the school in our new area and within a month the new school was PISSED at how the ball was dropped with assisting him the year prior, and though he had acclimation troubles they loved him through it , supported us and he got an IEP for emotional disability. This revived my trust in teachers and the school system because his Pre-K practically annihilated any trust and positive feelings I had until we relocated.

He is now in a regional program for children with emotional and social disabilities (Autism, ADHD and other emotional disorders), equipped with clinical staff, social skill groups and class sizes of no more than 7 children.

Last April he did get the ADHD diagnosis which we found was the driving force of his anxiety and impulsivity and with continued supports were able to navigate through that.

I have definetly learned to lean on the village that surrounds us, acknowledging I cannot do this alone and to allow those set in place to assist with Kaiden or be an emotional support to me to be such. I can say at 7 years old we have found our niche with coping and strengthening emotional-social skills and while these past 5 years have been rough – I have developed such a confidence and optimism for our future.

In light of all of this, Kaiden is one of the most creative, intuitive people I have ever met. He has so much potential.

If you have a special needs child its a no brainer to know it can be a lonely road; there are things others wont understand unless they are in your shoes. Know that you arent alone, try to find a support group with other parents who can relate. Yes support groups exist, many moms have assisted me in groups with their experiences and knowledge to help me navigate my own journey. Plus, its always good to go through those motions and find people who can 100% relate. Continue to advocate for your child because no one will advocate for your child like YOU will. If someone asks if you are okay – its okay to say that you arent. Allow people to help, realize everyone just wont understand but -allow those interested the opportunity to understand so they can help and know that you have what it takes to be the supermama you are to your child who is different…..but NOT less.

3 thoughts on “My Journey as a Mother to a Special Needs Child”

  1. Thanks so much for sharing your story! My day has sensory processing disorder and a language delay. I ultimately quit my job so I could get her to the therapists she needs. It can be lonely sometimes, but it’s nice to know that other parents struggle with similar things.

    Like

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