My oldest child was typically developing, but had special needs from birth. As soon as he was born with severe food allergies, asthma, projectile vomiting, and immune deficiencies, I was a “special needs” mom.
Add in my second child, and now our youngest child, with severe medical special needs, and you get a mother (and a family) dealing with things most moms never deal with. But, to me… It’s just being a mom because it is all I know.
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Here are 5 things you should know about a special needs mom:
1. Most “normal moms” do not understand me or our parenting choices. They simply can not, because they have never been a mother to my kids with their unique special needs. Thankfully, I have sisters who have been there from the start, learned alongside us, and were willing to take notes about how to do everything with my special kiddos and respect all of our choices for their health and life. Because of them, we can get a break from the kids when needed. Blessing: learning to appreciate the sacrifices others have made for us and how God has provided for us.
2. I may be labeled as the “over-protective mom” because I care about every single thing that goes into my kids’ mouths (and eyes, mind, heart, and… okay, those last few things shouldn’t be reserved just for special needs moms). Because of asthma and food allergies, I have had to care very deeply about our food choices for years. Dairy and peanuts are an absolute no-no for some of my kids because their life depends on it, and they could die… and only a small amount of sugar and white carbs are ever in our home, because… their life depends on it to stay healthy (I believe in eating healthy to be healthy). Our daughter has mitochondrial disease, so why would we eat things that are toxic to our mitochondria? This doesn’t mean my kids are deprived! They get lots of homemade bread & desserts/sweets, delicious fats (coconut oil is SO good for you!), protein, etc. They even get store-bought special treats of stevia-sweetened sodas and coconut cream frozen desserts! Blessing: We have learned as a family to think about what we put into our bodies and to care for our bodies (our bodies are the temple of God) and have learned moderation (a fruit of the Spirit and useful in every area of life!).
Special Needs Life Encouragement
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3. I have developed the habit of researching and learning all I can about things, because of the medical world I have been thrown into. I actually read medical journals online and can understand most of their terminology by now, out of necessity. I am the one who diagnosed my children before any doctor because I am their mother, and nobody loves my kids as I do, and nobody would put in the time and energy it would take to diagnose them! I’m guessing any other mother would do the same when faced with the exact same situations! But, this often means I am in this medical world alone, especially in real life … Not asking for pity, just understanding. I don’t have your life, you don’t have mine. Let’s respect each other. Pretty please?? Blessing: We have learned much more about our own health and can relate to others going through a medical crisis.
4. We live around a strict schedule of several medications, feeding times, and nap/bedtimes… this mostly applies to our medically fragile children, but when you have several small children (and you homeschool, too!), you must manage time wisely. You may not understand our need to be back home at a certain time, the need for our kids to be in bed at a set time, or our need to skip events completely. My daughter could literally die from missed meds or not enough sleep. Her life depends on my managing & scheduling skills. This is something I’ve had to learn since our oldest was born, requiring around-the-clock nebulizer treatments and allergy meds. Blessing: a bedtime for the kids means healthier kids and much-needed mom & dad time in the evening. We ALL win.
5. We have been forced to, and have chosen to, give up a lot of “things” most people take for granted or think are necessary. We have physically disabled children, and we can only go to handicap assessable places. Our children have weak immune systems. Our kids have life-threatening food allergies. Avoiding family gatherings and populated areas over the last few years has kept our family healthier. Blessing: We have learned to enjoy a simpler, quieter life. We have grown closer as a family and closer to God because of it, too!
You may not understand how we (me and the kids) can stay home all day, every day through the week… and actually not get bored! But, believe it or not, we stay very busy just living and embracing a special needs life! We have fun while we learn, do school, Bible study, cleaning, cooking, playing, exploring in safe-for-us-ways, and playing some more.
Maybe it is because our daughter has a terminal disease, or because I lost a child 88-minutes after he was born, or perhaps it is because I lost my own mother to cancer when I was 21… but I consider every second I get with my kids a privilege! I think any good mom feels the same way (I hope so, anyway, because it shouldn’t have to take losing a child to convince them of the importance of their job as moms).
My kids are not deprived because of our lifestyle. They don’t need to be out in the world to know that sin exists (or to have fun)… we find enough sin in our own home… where it is met with grace and Biblical truths (and we have tons of fun, too!).
They are being taught about sacrifice, compassion, love, and most importantly, the God of the Bible. So, don’t feel bad for my kids because they have a handicapped sister and are mostly “housebound”… instead, be thankful along with us that they get the opportunity to see & learn real faith, hope, and love because of Abigail.
At the end of the day, I am not any different than any other mother. I want what every Christian mother wants for her children: Jesus Christ.
We only get our kids for a short while, and then they are off on their own as adults, making their own choices. We must take seriously what God has called us to do in the bringing up and training of our children to be followers of Jesus Christ!
I don’t want my kids to think they were deprived or feel sorry for themselves because they didn’t have all the world had to offer them, I want them to always put God first and turn to His Word for guidance… no matter what they may face in life.
Obviously, I don’t expect them to turn out perfect… nobody is. Of course, we will make mistakes as parents… everyone does. And, We may not have a “normal” life, but it’s the only life we know.
Are you a special needs mom? Can you relate? What would you add to this list? Please share in the comments!
This made me cry…..I have walked beside you along the way..crying with you and for you..loving your kiddos and praying for you. I KNOW your life is different then most others but I also KNOW you are so very blessed!! I have witnessed God be your strength and I have rejoiced!! I would never wish your life (or mine even) on anyone but I can't help but thank God for all He has done in all our lives!! There is NOTHING more important then Jesus and our salvation and as a mother I strive to teach that to my kids as well….I have been so blessed by your life! Keep on keeping on! You are doing an amazing job with God as your guide!! Love you!!
Thank you, Elisa, for everything!
You are welcome! 🙂 God is good, He is the one who gives me the strength and the desire to help you! It is all Him! 🙂 We are so blessed by you and your family!!
I also wanted to add I understand the food allergies…with Liberty being allergic to peanuts! It is NOT fun at all and it is quite stressful! We are VERY careful where we eat out and what she eats, and most of the time it is less stressful to not even attend "events" but IF we do go we pack food for her (I am so thankful we only have one child with allergies!). (After attending a funeral with her and she couldn't eat anything at all I learned my lesson the hard way. I refused to eat myself since she couldn't) 🙂
This is an excellent post Clarissa! You are amazing!
I think you've made some excellent points and I also think that some apply to all parenting. No one fully knows the situation you and your family are in. They really should never judge. I used to have a friend who would drive me crazy with telling me what I should do with my twins. I felt like saying ' if God wanted you to have twins he would have given them to you'. I know she meant well, but she had no idea of our situation or why we made our choices.
You are an amazing blessing to your beautiful family!
Blessings
Renata:)
Thanks, Renata! It is comforting to know others understand! 🙂
This went straight to my heart as I know it's straight from yours! I know I don't know what you had/have to deal with personally, but I do know the love, tears & prayers of a mom. Your journey has been different & I know it's God who has strengthened & kept you! I also agree with Renata that some of this applies to all parenting, especially moms. It wasn't too long ago that I felt like no one else understood me or where I was coming from with my parenting choices, it's a very hard(lonesome) place to be(I also felt that way about my own hubby at the time. Thank God that things have changed since then!!) I also know that Elisa has been called to a different place than me too. But I guess I am in my own place also, as we all are…not trying to diminish the difference of a special needs mom though!
It feels good to know that these are also "normal" mom things! I have been criticized for my parenting choices as though they are very abnormal, so I came to the conclusion that it must be because of my kids having special needs. 🙂
I agree that some of this applies to being a parent (mom). I too recently have felt alone in my parenting choices and stuff and felt like no one understood where I was coming from…like Mindy said it is hard lonely place to be. So I too find comfort in knowing other moms have had to deal with some of the same things. 🙂
I was thinking the same-some of these apply to all moms-we all do what we think is best/what works for our family/children. I know people who think our children are deprived because we live in the boonies and our children don't have Christian friends here, but they're happy and well-adjusted and seem to be fine when they are with others.
I'm glad you can relate Nadine, but sorry others have criticized your lifestyle!
Special needs kids bring blessings to our lives like no other person could. Especially when an Autistic child spontaneously gives me a hug and I am just an adopted grandma. My own granddaughter gave me the blessing of choosing homeschooling over public school until we were no longer living together. I wouldn't have missed it for the world.
So true, thank you for sharing!
Clarissa: I also have a child who is mentally challenged. Not because he was born that way but because I did what every mom who had a child when mine were born had them receive the baby shots. He received bad serum which was ironically recalled the day after which didn't help him. He ran a 106 degree fever for a week no matter what the doctors did. Unfortunately he had brain damage because of the fever. The are of the brain that was damaged was memory and emotions. He is also I would not say allergic but he can't take sugar. It really sends him onto a emotional high. You peel him off the ceiling when he has too much sugar. On top of that I had In Laws who did not feel that sugar was bad for him. Neither did the public school he went to. He had problems and it was because of my parenting skills or so I was told over and over and over and over again. I even had a psychologist who saw my boys, (both have learning problems), without my permission or knowledge. On top of that my daughter who made sure her littlest brother got on the bus at school was sick one day the psychologist told the teachers he needed to learn to get on the bus himself and not give him any help. When he wasn't on the bus with his brother I drove like a maniac to the school after I had called someone who worked there and made sure someone would be there to let me in and they had locked my son in the building alone and he was only 6 years old. All this happened before all the electronics we have today. 1984. We are part of a mission for the deaf and so we enrolled our children in the missions homeschool sections and we drove 75 miles one way or 150 miles round trip every day so they could not say we were not educating our children. One they forgot about us we started homeschooling at home. He still has emotional problems because of that year in Public school.
So my suggestion to any parents don't get Baby shots when they are babies if you really want them to have them wait until they are at least 4 years old and make sure you know what ingredients are in them.
Second don't ever let your child step into a public school. They will be better educated and emotionally stable if you homeschool.
A 65 year old mom who is still homeschooling her 37 year old son
Thank you for sharing! I am so sorry for the way your son and family were treated, but so thankful that you were able to rise above all of it and do what you knew was best!!
Difficult? Yes. Impossible in our own strength? Yes. Worth the sacrifice? Yes. As an adoptive mom of an abused, traumatized son, the journey has been more challenging than I ever imagined it could be. But God gave this assignment to us and I want to look into His face and know we finished the course, even in the midst of our failures to do it right at times. He sees the end, and I will hold onto His hand until it’s done!
Yes, amen!