Special Needs

We have kiddos with special needs in our family.  I have both adopted and birth kiddos on IEP's.  God gives our family the grace to walk through these things, advocate, research and find wisdom in different treatments, medications and therapies.  At times it can be frustrating, irritating, depressing and feelings of sadness and anger are no stranger here.  It is tough to see your children struggle and deal with things that you did not have to deal with, and have no control over.  However, I feel very blessed that we were chosen to be parents to our four incredible kids.  It is a privilege to fight for, advocate, encourage, love and help  Even on my worst days, I am thankful I can get the best medical care, therapists and tutors for my kiddos.

Some of the various special needs our family navigates are: Obsessive compulsive disorder, ADHD, ADD, Microcephaly, Childhood Onset glaucoma, sensory processing disorder, language delay, Tourette Syndrome (Tic's), Auditory Processing disorder, and possible spectrum disorder.

I am blessed that we have a great team of medical professionals and educational professionals that stand beside us as a support system.  We have an incredible pediatrician that I recommend very highly.  Dr. Miller has been an incredible advocate and support for my children receiving evaluations and referrals.  Some other members on our team include a pediatric glaucoma specialist, pediatric geneticist, pediatric cardiologist, ENT,  psychologist, counselor, pediatric neurologist, feeding therapist, speech therapist, (soon to be occupational therapist), educational tutor. 

I currently have one kiddo on an IEP(Individual Education Plan) and one kiddo on an IFSP (Individual Family Service Plan), with the probability of one more kiddo on an IEP once we can get all the testing and evaluating complete.


Glaucoma is the big one at our house these days.  Essentially glaucoma is an older persons disease.  But there are cases of early childhood onset glaucoma (which is what Luke has) 1 in 10,000 were the odds in this lottery that we won.  Basically the eye builds up pressure because the fluid in the eye doesn't drain the way it is suppose to.  This build up puts pressure on Luke's optic nerve and if too much pressure is put on the nerve it causes irreversible vision loss, starting first with one's side vision (or peripherally vision) which is what is happening to Luke.  He takes eye drops each night and they are helping to relieve the pressure in the eyes.  Currently we are going every 4 months to Casey Eye OHSU.

Sensory processing disorder is the inability to normally process and filter sensory stimuli in the environment.   Typical people are able to filter the humming of florescent lights or the refrigerator or not be bothered by minty toothpaste or scratchy tags in their shirts. When you cannot successfully filter stimuli it causes a person to overload and build up in intensity.  This may come out in behaviors, mood changes or acting out.  A few of my  kiddos needs someone/something  to help "bring him down".  This can be done by heavy work, weighted clothing items or blankets, swings, pressure, etc.  Three of my kiddos have weighted blankets.  I have also used cold eye masks to help too.  The cold mask delivers a reset to your system.

Man Cub is a sensory seeker.  You will often observe him walking on his tip toes, crashing into things, pushing heavy things around.  He has major aversions to different food textures and a language delay.  I am watching him for a possible spectrum disorder.




We have navigated various surgeries throughout our journey parenting.  By far, the most difficult one for me was Luke's heart surgery.
Being a special needs parent is a hard, hard job.  I feel like I am exactly where I need to be, but I am often exhausted.  I speak for them, advocate for them and shout their worth!


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