Special Needs Spotlight || Zachy + Evan

Hello there! I am Sherrie, a full-time working mom to my beautiful little Zachy and his brother Evan.  Evan and Zachy were born in Reston, VA and we now live in a suburb of my hometown of Denver. Zachy is my sweet boy. Everybody loves Zachy. He is charismatic, energetic, and sooo sweet. Zachy was born with a rare genetic abnormality called chromosome 20p13 deletion. It is so rare that it doesn’t even have a name and isn’t classified as a syndrome. My little guy is quite complicated and has a whole lot of issues going on. He has epilepsy, autism, global developmental delays, growth delays, and auditory communication processing issues with poor working memory causing a mild intellectual disability. These are all things that have been seen in the limited studies (7 children) done on this type of deletion. So, to make this easier to understand he is missing information on the very end of the short arm (p) of his 20th chromosome. The missing piece of the 20th chromosome includes 2 genes that code for proteins found in neural cells. We are unsure at this time if it is a de novo (new in him) abnormality, meaning his daddy and I are not carriers, or if in fact it does come from one of us. I decided that it doesn’t matter since we are not going to have any more children, and assigning blame or determining where it comes from doesn’t matter. Zachy has this deletion, period. I am very active and involved in lots of special needs groups and actions (especially for autism since both my kiddos have autism) that will hopefully make things easier for future parents of special needs kiddos. My special needs journey did not start with my little Zachy, but with his brother Evan. His brother Evan has been diagnosed with autism, ADHD, sensory processing disorder, and is thought to be twice exceptional. He is more of an acquired taste compared to his brother, but he is sweet, loving, energetic, and fun. So as you can probably guess, I am kept very busy with my two precious boys.

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Miggy: Hi Sherrie! Thanks so much for talking to us today about your special boys, Evan and Zachy. First, can you take me back to the day or days you found out that your boys both had different developmental needs? Do you remember how you felt then?  Can you compare those first thoughts and feelings with how you feel now?

Sherrie: We first discovered that something was not quite right when Evan was in preschool. He was almost 4 years old. I kept asking and searching for answers, and I finally hit on sensory processing disorder. All the symptoms fit so we took him to an occupational therapist to see. She officially diagnosed him with sensory processing disorder. I immediately pulled both boys out of their preschool and hired a nanny. This nanny implemented a sensory diet for both boys. That was when we discovered Zachy was having seizures. He was 2 years old. I really can’t explain the feeling of having your hopes and dreams somewhat dashed all at once.  Not only did I have one special needs kiddo, I had two. This of course was just the beginning, but I must say, I was definitely devastated at the time and needed a reality check. So as I was sitting in Children’s Hospital as Zachy was having an MRI and feeling sorry for myself, a little boy in a wagon was wheeled past me. This child did not have long to live…maybe days. Then it hit me, this is not nearly as bad as it could be. Yes my child has seizures. Yes it sucks. But he isn’t dying at the moment and we can mostly control the seizures with medication. That was the start of my ‘go with the flow’ attitude I have now. I no longer am devastated by their special needs, which turned out to be much much more than what I was dealing with then. Many things have come up since then, and though more issues are never what any parent wants to hear, I try to think about what I can do to help them work around their challenges. It is but a puzzle to be solved. These days I am much more optimistic.

Miggy: Please educate us about each of your sons and their diagnosis. How do your childrens’ differing needs affect your day-to-day life?

Sherrie: So both my sons have multiple diagnoses. I guess I will start with Evan. He is high functioning autistic, has ADHD, sensory processing disorder, and is thought to be twice exceptional (he refused to take the test to prove it). Evan has low frustration tolerance, anger management challenges that go along with emotional dis-regulation, and trouble focusing on anything that doesn’t interest him. He is noise sensitive and sensory seeking so he crashes into things to get the sensory input he needs. He is also my fight kid when he is overloaded and upset. As you can imagine, this poses many challenges for him at school. When he was in 3rd grade he was suspended several times for behavior. We finally got the autism diagnosis and he is now in an autism program at a different elementary school that is staffed with experts that know how to handle autistic behaviors. The problem I run into the most with Evan is that he looks so neuro-typical (“normal”), that people treat him as such and have those expectations; however, problems arise when he begins to exhibit his autistic behaviors. We spend lots of time prepping for outings and prepping for transitions. We leave places if they are too loud. If we go out to eat we order food with sauces on the side (Evan can’t handle mixed textures). I handle everything with a positive spin since negativity sends them both into fits. Both boys are extremely sensitive to negativity.

Now Zachy has some similar diagnoses, but is completely different. He is high functioning autistic, has sensory processing disorder, global developmental delays, growth delays, seizures, and a mild intellectual disability (slow auditory processing and poor working memory). So for Zachy I will start with the seizures. He has partial complex seizures that start in the temporal lobes (partial complex seizures start one place then spread) as well as myclonic (twitching) seizures during the day. At night he has tonic-clonic or grand mal seizures. With Zachy’s seizures, they are not the falling down shaking kind of seizures. He simply will zone out for a minute and when he comes back he is typically scared, light sensitive, tired, etc. Depending on the severity of the seizure, he could be up walking around, lose consciousness, or anywhere in between. As most of us know in the epilepsy world, living with seizures or someone that has seizures can be challenging. No baths alone, no group swimming lessons, medications, constant analysis of every twitch, continuous dialogue with Children’s Hospital Neurology, etc. On a positive note, we are lucky in that Zachy’s seizures are mostly controlled by medication. We are also in the process of getting a seizure response/autism dog (Kai is in training at the moment) as well. I mentioned before that both kiddos have autism and sensory processing disorder, but Zachy tends to run away and hide instead of stand and fight; therefore I refer to him as my flight kid. Unlike his brother, Zachy does not seek sensory input but avoids it. With Zachy, I do a lot of reminding along with the prepping for outings and transitions. He also appears quite “normal”. He is a couple years behind his peers as far as development, but he also has growth delays so he looks a couple of years younger than he actually is so that helps with the illusion.

Our day to day life consists of a variety of therapies (hippotherapy, movement/music therapy, speech/language, water safety/swimming lessons, mental health and massage therapy) social groups, play dates, and a fun activities that we do together. We are busy!

                                                                                                     

Miggy: What are the biggest worries you face for both of your boys?  Conversely, what are your hopes and dreams for them?

Sherrie: My biggest worry for both boys is that they won’t reach their full potential. I want them to be able to lead happy productive lives. They do not have to be millionaires or rocket scientists, but I really want them to have jobs, their own houses, and even spouses. I want them to look back and see how far they have come, how much they have accomplished, and realize how wonderful and amazing they are.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?  

Sherrie: Autism always brings interesting moments. My kiddos really have no idea that what they say can be shocking or taken the wrong way. For instance, their grandmother died recently. She had been sick for quite a while. Anyway, we had gone over to see her shortly before she passed away, and as we were leaving, Evan told her that he loved her and that we would come back and see her again, “ya know, if you’re still here!” I was horrified! Fortunately, she didn’t hear him. Evan always says things so matter of fact. On another occasion we were in the McDonalds Playland, and this larger kid wasn’t playing in the playland. Evan announced, rather loudly, that he understood why the kid wasn’t playing in the playland…because he is too big and would get stuck! Of course he didn’t mean it to be rude. He actually thought he was sympathizing with the kid and showing understanding…

And why is it every autistic boy seems to love Minecraft?!? In any event, my son Evan has this large Creeper (from Minecraft) stuffy that he has to bring everywhere with him. He also forgets him frequently so we find ourselves asking him, “Where is ‘Creepie’ or where is your creeper? Do you have ‘Creepie?’ Hold onto your creeper! Don’t lose your creeper!” These always produces some strange looks. And dear Zachy loved Woody from Toy Story. So he had a Woody (from Toy Story) stuffy. As we were out and about with a female friend of ours, Zachy asked very sweetly if my friend would hold and take good care of his “Woody”. He of course meant his stuffy, but that produced some strange looks for sure! Thank goodness he has moved on to Lord Business!

Miggy: How can people best approach or respond to your children? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Sherrie: As with any kiddo with autism, approaching them slowly helps. They may not look at you or respond to you, but they do hear what you say. As far as avoiding awkward situations, I think that people in general need to be more aware that people with autism are not intentionally mean or rude. It just simply never occurs to them that what they are saying or doing could be viewed that way. And they are not defiant kids, sometimes they really can’t control themselves.

And to all the parents of typical kids… please don’t judge or try to give advice unless you have walked in those shoes. I had so many people telling me before my kiddos were diagnosed, that my kiddos were fine and it was me that was not parenting them appropriately.

Miggy: Sherrie you also mentioned being divorced and sharing custody with their father. Can I ask about the strain that having children with special needs places on your marriage? Was it a contributing factor to your separation? If you don’t have the support of your spouse, have you been able to find that support and help elsewhere? Is there anything you’d like to share with other divorced parents who are also raising special needs children?

Sherrie: Having special kiddos most definitely puts strains on marriage. In my case, it was just the icing on the cake. My ex is verbally abusive and has traits of narcissistic/borderline personality disorder. The court system awards 50/50 custody regardless. I of course think that this is not in the kids best interest; however, to try and get the custody changed does more harm than good. It is extremely expensive and difficult for all parties involved with no guaranteed outcome. So instead of fighting him for additional custody, I chose to put time, money, and effort into teaching them how to deal with their dad. He will always be their dad, so it is better to teach them how to get along with him instead of more contentious fighting in court.

Their father, though he has 50% custody and receives child support from me, does not do any of the therapies, doctor’s appointments, school IEP meetings/behavioral meetings, play dates, social groups, and he does not pay for anything. I do it all, but then again I did while we were married too so it wasn’t a big change for me. The one exception to that is breaks. I actually get breaks now and time to recharge. I never realized how needed that was until after I was divorced. That is the one thing that I cannot emphasize enough to other single parents of special kiddos…you have to take care of yourself. However that looks for you. Otherwise, you cannot possible take good care of anyone else.

As for support, I have lots of support. I am very active in the autism/special needs world around Douglas County in Denver and have many friends that are parents of special kiddos. We all try to help each other out and I have to say, these parents are so strong and some of the most amazing people I know.

Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Sherrie: I guess there are a few things… Just because things didn’t turn out how you envisioned them doesn’t mean that it is all bad. I love my boys with all my heart. I love who they are. I was asked recently if there was a magic pill to take all of their special needs away, would I give it to them. I don’t think I would because it would forever change who they are. I would like to take away the seizures though. The other thing is to keep a good perspective and take things one day at a time. Live in the moment. Celebrate the accomplishments and try not to get so bogged down in the disappointments. And last, but not least…you cannot worry about things that are beyond your control. Better to focus on the things that you do have control over and effect positive changes in yours and your kiddo’s lives.

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Sherrie, thank you so much for sharing your beautiful family with us today! And yes I feel like I am constantly being reminded not to worry about the things I can’t control…having children with such varied needs certainly helps bring that into focus. We can only do so much, so do your best then let go. I really appreciate your advice to approach kids with autism slowly… I had never head that advice before–makes sense! Also, as with so many of the kids I’ve spotlighted your reminder that even if they don’t respond, they hear you anyway. I’ve learned to be very cognizant of that and to remember that there is a great need to treat people with disabilities–all people really–with humanity and respect regardless of whether or not you think they understand or ‘get’ it. Thanks again Sherrie and l wish you and your handsome boys the best!

As always if you or someone you know would like to participate in the special needs spotlight please email me directly at thislittlemiggy at gmail dot com. You guys are the best! I always appreciate your emails and comments of encouragement. This spotlight has continued all these years because of you. So thanks.

XO Miggy