SLP Mommy of Apraxia

Tag: ADHD

  • Keep shining, the world needs your light

    Keep shining, the world needs your light

    When you have a child, you expect to teach them about the world.

    When you have a special needs child, you realize you have to teach the world about them. When you have an Ashlynn, like I have, you realize Ashlynn has something to teach the world.

    I didn’t expect to be the parent of a child with a rare genetic mutation.

    I had never considered two very important words to the human body called “motor planning” that if impaired, affect everything a person goes to do.

    I never thought my child would struggle to speak. Struggle to walk. Struggle to run or skip. To read. To write. To pay attention. To understand. I never expected any of these things and when they came each one felt like a small storm over my life. Did you notice I said MY life. That’s because even though the storm was happening to Ashlynn, she has never acted like there was a storm.

    Ashlynn has always attacked every obstacle with a smile and positive attitude. And because of this, she has grown, thrived and conquered.

    There have been many times I have had anxiety.

    I am human and have hurts, pain, disappointment, fear, anxiety or trepidation. Each time I have though I look at my daughter who has every reason to have a negative attitude, yet she never does. She has some natural superpower to turn lemons into lemonade.

    The 2020 COVID pandemic is one of those times.

    Though I try to shelter my kids from the news to reduce anxiety, it is somewhat unavoidable. Though they have taken daily bike rides with dad and walks with mom, the obvious cloud of social distancing hangs over our heads. The days blur. Ashlynn has said numerous times she misses her teachers and has shed tears. Always though and I mean ALWAYS, she will follow it up with a “but.” For example, tonight taking a shower she said,

    “This is hard mommy. I miss my teachers because of the corona virus.”

    I acknowledged that it was very hard but reminded her we do hard things. She always responds with a “but” that bridges to a positive. Tonight it was “I miss them BUT we can zoom them and see them that way and next year in 5th grade I will see them again.”

    I smiled. A song somewhere in my memory bank played “always look on the brighter side of life.”

    During this pandemic, she has asked daily to take walks.

    I have to admit that so many times I want to say no. Even though my intellectual brain knows exercise is the best medicine, I have an internal protest. However, I never regret going. Today she tripped over something because she was staring at her fitbit and she burst out laughing. She was in hysterics that she rolled her ankle because she wasn’t paying attention. Girlfriend has ADHD and dyspraxia that contributed and instead of getting upset, she laughed at herself. And her laugh isn’t a simple laugh. It’s full and rich and contagious.

    I thought I would teach my child about the world, but turns out she had something to teach us. My sister once said she spreads sunshine wherever she goes and I can attest this is true. Keep shining Ashlynn Kay, the world needs your light.

  • This school year, teach your children to be kind.

    This school year, teach your children to be kind.

    Fresh backpack, lunchbox, shoes and school outfit are waiting tomorrow for my child’s first day of school.  There is an excitement in the air as we bought school supplies and met her teacher last week.  She picked out her name tag like the other kids and picked her seat.  She flashed a big smile to her new teacher and chattered endlessly about school starting again and how she was excited to go back and to learn.  We went and got a new haircut and she told the stylist how she was starting third grade.

    Tomorrow I will take the historic first day of school picture. I will probably proudly post it on all of my social media accounts.  I will most likely scroll back and look at it a couple of times and wonder where my baby has gone.  I will marvel at how this school aged girl with long legs is standing on my front porch.

    That is where the similarities will end.

    As many parents cheer and are relieved to get back to a routine, I’m left with only nerves and trepidation.  The summers in my house are happy.  My daughter is a child who can explore the outdoors and experience life as a carefree and curious kid.  She plays with neighbor children until bedtime and explores campgrounds on the weekend.  She makes mud pies and collects dirt under her fingernails that need to be clipped and scrubbed frequently.

    Unfortunately school brings other stories.  The child who played carefree until bedtime with neighbors is the same child who is frequently seen sitting with her teacher’s aid (TA) at lunch and playing by herself on the playground.  The fingernails that grew long and collected dirt over the summer are replaced with widdled down nubs during school that are bit, picked and chewed so much that her shirts frequently come home bloodied or on some really bad days, have to be changed completely.

    The girl who chatted endlessly to family and friends is the same girl who is quiet and reserved at school, frequently clamming up when put on the spot or asked a direct question.

    The child who could explore during the summer and jump from varying activities is the same child who frequently loses focus and can’t concentrate on subjects at school.

    My child has invisible learning disabilities.

    Many of them.

    However underneath them, she is still just a kid like your son or your daughter.  She is curious.  She is friendly.  She wants friends.  She craves connections.  She’s excited to learn.

    This year as you talk to you children about their new teacher, new classroom, and new adventures, I beg you to talk to your kids about being kind.  I beg you to explain to your child that children with disabilities are just like them, but it might take a little longer to understand or get to know them.  If nothing else though, please just teach your children to be kind.  Maybe ask about something they did that was kind alongside your questions of who they played with or what they learned.

    Our kids will thank you for it!

    Sincerely,

    A proud mama to a child with hidden disabilities

  • Why you are the CEO and CFO in special needs parenting

    Why you are the CEO and CFO in special needs parenting

    A discussion in one of my groups the other day centered around the fact that parents of kids with special needs have to be the CEO on their child.  This extends beyond the idea that we are experts on our child.  The CEO, by definition, is in charge of making all management decisions.

    Parents of children with special needs have to be the CEO, and there is LOT to manage.

    Some days, it can feel unmanageable.  A CEO is typically responsible for the success of a company, which is no doubt stressful; but a parent feels they are responsible for the success of something even greater than a company……

    Parents feel they are responsible for the success of their child’s future.

    I know all parents feel this way about all of their children of course, including those with special needs.  However, the stakes are higher when you have a child with some sort of delay or disability.  A child with special needs is already starting life behind the eight ball.  A parent of a child with special needs feels intense responsibility to give them the best chance at a normal life, which is hard enough in this world without a disability!

    Parenting a child with special needs is a juggling act.

    When a parent has a kid with special needs, they spend their time not only at the pediatrician, but are bounced from specialist to specialist in many cases, just in an effort to get an actual diagnosis.  Kids with special needs in many cases have visited developmental pediatricians (different from regular pediatrician), neurologists, and psychologists. They have had blood taken, scans done, and more doctor visits to discuss results.  They have been poked, prodded, and examined more than the neuro-typical peer.  Their tiny bodies might have been subjected to sleep studies, sedation, and sometimes surgery.

    Therapy is always in the mix.  They may see occupational therapists, physical therapists, speech therapists, play therapists, behavior therapists, early interventionists, vision therapists and the list goes on.  Seeing a therapist always means another new evaluation, where this child who struggles anyway is subjected to tests and judgement calls as to their performance compared to typical peers.

    Obviously, there are only so many hours in a day and so a parent; the CEO if you will, has to choose  and prioritize many of the above listed appointments and even others not on this list.

    Unless you have been in this position, you have no idea how excrutiatingly difficult it is to decide which doctor or therapy your child needs most or more.

    Remember what I said before.  As a person making these decisions, the weight of your child’s future feels like it lay squarely on your shoulders.  Hopefully, you can get an appreciation of how big that weight becomes.

    Let’s not forget though, money.  All of these things cost money.  Insurance in many cases does not cover the brain scans, the MRI’s, the evaluations and the therapies.

    It causes a parent to become the CFO for their child as well.

    A CFO is responsible for the financial affairs.  Oh, and in the case of a parent with special needs, one doesn’t count on paying thousands of dollars out of their budget when they are starting a life with their partner, buying their home, and preparing for a new baby.  I had a supervisor tell me once at a private practice, no one can afford therapy, because no one counted on the huge hit to the budget these therapies, doctor appointments, and evaluations will cost your family.

    If you are lucky to get some sort of disability, Medicaid, or scholarship to help fund the cost; it’s not without another price.

    Time.

    All of these applications take an enormous amount of time.

    Parents need to gather required documentation, letters from insurance companies, doctors, evaluations, tax returns, and medical records to name a few.  A parent will spend hours filling out paperwork, spending time on the phone, and listening to hold music.  This time is well spent if a parent can get insurance to cover or get money to help with expenses; however, prioritizing time and finding time is not easy when we are shuffling our kids to doctor appointments and therapy appointments (see above).  This on top of finding time to put them in “typical” kid stuff like soccer or gymnastics and letting them go to birthdays like other kids do; in hopes that they can feel “normal” at least some of their childhood.

    If we are lucky, there are times we CEO parents find the perfect team.  We’ve got the diagnosis, the plan and team of therapists to treat it, and we see our child do the most amazing thing in the entire world……

    Make PROGRESS

    It’s probably the most beautiful gift in the entire world and in that moment; all the guilt, all the stress, all the worry, all the money, and all the time was 100% worth it.