Uncategorized

To The New Special Needs Mom

*** I firmly believe in Early Intervention. If someone in your child’s life mentions red flags that they are seeing in your child’s development, don’t dismiss their words.

If they are wrong after you get your child evaluated, respect them for voicing concerns. That takes guts.

If they are right, don’t feel guilty and don’t for a second think that they noticed more than you did about your child.

They were purposefully placed in your life  to help you begin navigation into this unexpected world.

Part of making this journey work means listening to and digesting the unique perspectives that each person offers to help your child reach their potential.

*** Every home and child is different and I very much respect that. This advice is simply based on our experience with Camryn who is now 13. At 13 months we were told she likely had an Intellectual Disability. Years later she would get an official diagnosis along with- fine and gross motor delays, ADHD and Autism.

Recently, a friend from college wrote to me. She has a child with Autism. She hoped that one day her son would be doing the things that Camryn is doing. I just wanted to hug her. Her words to me were as if I had written them myself years earlier.

This advice is for her and for all the other parents who lay in bed at night pondering the future. We don’t have crystal balls, but there is a plan that we aren’t privy to.

This is clear- God doesn’t make mistakes. This poem has served as a perfect reminder for me:

During the early years, a parent of a child with Special Needs is on a never-ending balance beam. If the parent falls to the left, they will join the parents of typical kids. If they fall to the right, they will join parents who have children with disabilities. Early on, falling to either side causes injury.

The fall to the right is so unfamiliar. The falls hurt. The falls make you fear that  you’ll never have balance again.

The falls to the left make you wonder what life would be like if you kept falling in this direction. The falls to the left also challenge you to look at the right side. This is the side where coaching,  networking and friendships will lead to the perfect balance. Eventually, your two sides will become one and you will understand just how important that balance is.  The beauty in the journey is the confidence in discovering that where you fall doesn’t matter. It is how you recover from the fall that most counts.

Here are  things I wish I would have known from the beginning. The days where doctor after doctor, therapists and new therapies were all I thought about, talked about, researched and fought for. The days where I felt so alone. The days where I felt my child was broken, where in fact, I was the broken one.

  1.  A diagnosis of Autism and Intellectual Disability does not define the possibilities for your child’s future. The sky is the limit. Camryn is doing things now that I would have never dreamed she would do. Look at it like this, milestones may feel as if they move at a snail’s pace, but revel in the time spent in that stage. I love that I remember so much of Camryn’s early development. It is because we spent so much time in each phase. When mastery was achieved we would celebrate and still do.
  2. It is NOT your fault. Of course, I questioned if I caused this. What Mom wouldn’t? I wasted so much energy faulting myself.
  3. You are going to be a great advocate even if you don’t know where to begin. There are so many resources available. If you need help navigating the system, message me. I would love to help! I think the dumbest thing someone said to me at the beginning sounded something like this… “This is easy for you. You know everything because you are a teacher. You know how to navigate the system.” I was a high school English teacher. Find your ride or die chicks.
  4. Your marriage can survive this and get even better. Navigating the system is so much better with your best friend. At the same time, I always felt that Dave and I had a nonverbal agreement that allowed me to take the lead. He never interfered with decisions, but was always there to listen. Sometimes the less chefs in the kitchen, the easier. If you have strong feelings that your child needs to be evaluated, I would suggest working hard to get on the same page as you begin an unexpected journey. I would hate for anyone to look back at those years of disagreeing as missed opportunities for Early Intervention.
  5. You are a warrior. You just didn’t realize you had armor. Wear that armor with pride! You may be a lifelong caregiver. To a certain extent I know we will be and that is okay 13 years later. There is no one in this world I would rather care for.
  6. Pray for patience everyday. Without Jesus, I would feel so hopeless. One day, Camryn will run up to me in heaven and we will talk for hours. She will be able to climb, ride a bike, and  socialize without a barrier. I can already imagine my sweet girl reconnecting with people who helped her along the way and thanking them. Autism can never touch her genuine heart.
  7. Find an awesome church where your child with Special Needs is included. Camryn is a ROCKSTAR at Journey Church. Everyone who knows her becomes a fan. She serves and attends a Home Group with typical  teenagers. If you don’t have a church, Dave and I would love for you to join us. Message me! If you feel you can’t attend the church you use to because of your child, that isn’t church. That is a monastery from the Middle Ages.
  8. Your child will work harder than you ever have. The countless hours of therapy will be second nature to him/her. They won’t complain like we do… we complain about the most ridiculous things. Oh and if you are worried, you will be able to work full-time, balance the schedule and even have other kids who will have schedules too. I only lasted until Camryn turned 12 at my full-time job and I am not quite sure how I even did it that long, but I did and it was never as bad as I anticipated. And then I quit because 4 kids, a full-time job , and Autism were not a fit for us anymore. I couldn’t remove the kids or the Autism, so I picked the job. And guess what… it is all good.
  9. You will cry a lot, but the happy tears will triumph. And man are the happy tears awesome!!! When Camryn does something amazing, it is extra amazing. It is a feeling of joy that I think is slightly closer to heaven. I get joy seeing my other girls do great things, but the joy I experience with Camryn is incomprehensible.
  10. People will look at you and your child in public. Chalk it up to respect no matter how hard that is to do at times. Really though, who cares. Everyone has issues. It is not my fault if I brought my issues to Target today.
  11. If your child has siblings, those siblings are developing character filled with grit and empathy. Typical kids get embarrassed if their Mom kisses them in front of their friends. Typical siblings are not like that. And if mine were, we would have MAJOR issues.

This will all work out. In an odd, unexpected, shocking, blissful way, THIS WILL ALL WORK OUT and you will be better off in the end. Yes, the birthday parties at the beginning stink and Peter who can read at 2 (and doesn’t have Autism) has an annoying Mom, but it will all level out. Soon Peter won’t be so perfect. He’ll talk back, be disrespectful, like a typical kid.

And you… you can enjoy the peace associated living with someone who views life in a more innocent and genuine way.

Jesus helps this mess!

%d bloggers like this: