Hi! My name is Kami and I am the mother of three children - Max is five, Maude is three, and Olive is 19 months. We began to have challenges with our son Max when he was 15 months old. He had two grand mal seizures while on vacation. This led to a hospital stay with no conclusive results. When we returned home, we visited a neurologist who deemed his seizures a fluke. He had a normal EEG so we were left feeling like maybe that was the end of our worries. A few months later, he had a terrible reaction to cashews where much of his face swelled up and hives covered his whole head and torso. Just before his second birthday, he had a third grand mal seizure and it was then that I really began digging into figuring out how to help our little guy. Again his EEG was normal but he was officially diagnosed with epilepsy. Thankfully that was his last seizure so hopefully we have outgrown that diagnosis! Along the way, we also uncovered a speech delay, a diagnosis of dyspraxia (which I am not so sure is the correct diagnosis for him), behavioral and sensory issues, and a multitude of food and environmental allergies which contribute to his chronic hives. Our life has taken some unexpected turns because of Max's special needs, but we've been surprised to see just how beautifully it has all worked out. We are now on a path that we wouldn't change and we owe it all to our little Max.
I blog about our journey with food allergies and special needs on my blog Finding My Niche.
Miggy: Hi Kami! So glad to have you today. Like a lot of kids your son has a variety of needs. Can you take me back to the day you knew something was 'off' with your son and when did you get a diagnosis? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Kami: It's hard for me to remember a specific day where I knew something was not right because things seemed to happen little by little. It began at 15 months with two grand mal seizures, then a reaction to cashews at 20 months, and lots of temper tantrums as we moved into age 2 and beyond. However, as I'm typing this, I am now remembering a certain day. I had felt bothered by his lack of speak for a long time but everyone kept telling me, "Oh he'll just blossom and one day start talking in sentences." But my gut felt like something was off. I read and read, wrote down all of his words, researched speech, talked to multiple different doctors and everyone told me he was fine. But I just knew something wasn't! Finally, just before his third birthday, I had him evaluated by a multidisciplinary team through the local school district which determined that my son had a moderate to severe expressive and receptive language delay. That day was a day that was both difficult and joyous for me. It was bittersweet, you could say. Finally, I knew one part of the equation that we needed to work on! So I felt happy to know that finally we would receive some help (after working so hard for so long without any support). But I also felt sad, realizing that he did have delays and special needs. I wondered what his future would hold and of course, the anxiety and stress was heightened. Now, I still often feel that anxiety and stress because naturally dealing with special needs is exhausting (physically, mentally, and emotionally) on a daily basis, but I feel stronger now. We've been through a lot and I have learned so much. I know we can handle what comes up and I'm more prepared to be an advocate for him so that he can have a happy, normal-as-possible life.
Miggy: Explain how Max’s specific special need affects your day-to-day life?
Kami: Our biggest issue right now is actually not with his speech language delay, but it is more with his behavior. We don't have a firm diagnosis yet but are in the process of trying to find out if he is on the autism spectrum (he has many, many, many red flags) or perhaps sensory processing disorder. We are finally in a place where we can go out into public without long, loud meltdowns, but now, we deal with them at home afterwards. He keeps himself very wound tight in public, which is great because he keeps himself together, but when we get home it all comes out in the form of long, explosive tantrums that are not able to be stopped or helped in any way. They just have to run their course. This obviously affects the feeling in our home especially on days where we have four or five tantrums. Max also has a tremendous amount of food allergies and sensitivities, so our life is greatly affected by that. He has been gluten free since just before his second birthday and now also avoids dairy, soy, corn, processed sugar, food colorings/additives, nuts, and often eggs. That means I have to make most everything from scratch, our food budget is extremely high which can often be troublesome, and when we go anywhere I always have to be prepared with a snack or complimentary meal to what's being served. He can't go to birthday parties without his own cupcake, can't go camping without his own homemade marshmallows and graham crackers, etc. It is a lot of work on my part, but I am happy to do it because I know it is helpful for him (I want his life to be as normal as possible) and there is really no other option at this point in time. Of course, his speech delay also affects our life on a daily basis but he is making many great strides in this area which has been so wonderful to see.
Max covered in hives and welts from his allergies, soaking in a sea salt bath to help detoxify his body.
Miggy: What are the biggest worries you face for Max?
Kami: I worry right now about him socially. He loves to talk about friends but when it comes down to playing with him, he has a very hard time. His speech language delay affects how he can talk to his friends and how much he can express. It takes him a long time to say what he wants to say and often kids aren't patient enough to wait long enough for him to finish his thought. He also doesn't have an imagination so I worry that he's not playing like a "normal" child should. I worry about his food allergies (thankfully none of them are anaphylactic, yet...they can become that way, which is scary) because I know it will be hard to always be so different from everyone when food is everywhere, all the time. I worry about kids making fun of him because of his food allergies or speech delay and hope I can help him know how wonderful he is even if others bully him.
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?
Kami: I am sure there are funny moments but I can't think of anything especially notable concerning our special needs. I just have to say that this little kid knows how to laugh and have fun. He always has! He was born to play. He began cooing almost immediately after birth and laughed a big belly laugh at 3 months. At 8 months, he was rolling on the floor laughing for a good 15 minutes because he thought a paper bag was over the top hilarious! Even though his behavior is extremely difficult at times, he has this innate ability to laugh and play which makes our home so much fun! Now, if only I could remember to laugh more, life would be even better!
Miggy: How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations especially since his needs may not be very obvious from the outside?
Kami: I think the best way to respond to my little Max is with love and patience. It takes him a long time to process and express his thoughts, so being patient with him while he tries to speak and letting him finish his thoughts is really important. He has so many wonderful abilities and I hope others can focus on those, instead of on his delays. In an ideal world, nobody would ever offer him food so he would never have to feel left out :) But that is just my mommy instincts wanting to protect him, which is of course, completely unrealistic! We recently attended a parade where they threw out candy, which he could not have because of his allergies, and every time someone approached with candy I just wished I could shoo them away! Luckily he is resilient and happily handed his candy to Daddy and watched Daddy eat it, enjoying that just as much as eating it himself. He is truly a tender soul.
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to your son/daughter?
Kami: My middle daughter, who is three, has become such a blessing and special light in our family. She is typically developing and has a warm, nurturing heart. She can often get her feelings hurt when Max is too rough with her but she is so patient with him, especially during his tantrums. She never expresses impatience with him with his speech and loves him to the core. She is such a tremendous example. Our youngest, who is 19 months and is also displaying developmental delays (she was just diagnosed with a moderate expressive and receptive language delay and is a late walker), is also a bright spot in our lives. She and Max have a beautiful relationship and a special connection. The love I see between my children is inspiring.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Kami: I always feared having a special needs child. I didn't feel like I was capable. The biggest lesson I've learned is that, hard as it is at times and as much as I feel like I'm failing, I am capable and strong. And I've learned that he was sent to me for a reason. He has changed me and made me grow in so many ways. Ways I would have never grown without him being in my life. I like to think that we made a special little pact in heaven where he told me he'd have these challenges just so that I could grow into the person I'm supposed to become. Because he really makes me a better person. I've also learned empathy for others. I remember an experience when Max was just a baby. There was a two year old at our house visiting and he was running around, destroying everything in sight! I totally judged his mother (in my mind) for not controlling him. Now that I've been there and I've been that mother, I've learned that we can never judge because every mother is trying her best and we never know what others are facing. That has been a wonderful, life changing lesson for me. In short... he has taught me how to LOVE. To love myself, to love him, and to love others unconditionally. Last, I have learned that mother's have a gut instinct and we need to learn to listen to it and follow it, even if others don't support us! We have to trust our intuition when it comes to our children because usually, it's spot on.
Thanks for having me Miggy! I love your spotlights so much! They have been such a source of comfort for me on this journey. I've often felt alone and unsupported, so it's always a beautiful experience to read about other mothers who are walking similar, yet different paths.
Thank YOU Kami. I'm so grateful to all you moms and dads who share your experience, wisdom, hardships, successes, and beautiful children with us. We learn so much. I have learned so much. I think a lot of us can relate to your fear of having a child with special needs. It always seems like something other people--other more patient and benevolent people--can do. But you're capable and strong and you're clearly doing a great job. And I also love what you said about Max having so many wonderful abilities and hoping that people could focus on those instead of his delays. Yes, yes and yes! Thanks again Kami for sharing your beautiful family with us. Max has a brightness that shines through his eyes and smile--I love the last picture of him smiling and looking just like his dad. Adorable!
As always if you or anyone you know would like to participate in the special needs spotlight please email me, or have them email me directly, at thislittlemiggy at gmail dot com.
Have a great weekend everyone!