Category: Special Needs Children


Sundays have been such a challenge for us in the last few months. For a variety of reason, I have ended most Sundays in tears for one reason or another.

To begin with; Caleb has been really struggling with being at church. Something was setting our sensory boy off about church and he would spend 99% of our time there having a complete sensory meltdown in the halls- which often included lots of screaming, hitting, and flailing in my arms. Basically every Sunday Caleb and I both cried in the halls of church. Him because he was feeling overwhelmed by something he couldn’t communicate to me and me because I was feeling like a bad Mom because I couldn’t figure it out and because I felt alone there in that place trying to help our son. I felt like Sundays involved Caleb and I battling something I couldn’t see or feel so I didn’t know how to help him. We have involved all of Caleb’s therapist in trying to solve this puzzle. Caleb’s behavior was stumping us all and one of his therapist even came to church with me and the kids to try and figure it out.

Added to that dynamic is that I am still not a pro at going places with all five kids by myself. When people typically have kids they do it one at a time with at least a nine month period in between to help them adjust to each new addition- we went from zero to five in less than two years. No adjustment time and with the exception of Caleb and Baby Otter the kids came in multiples. We are coming up on a year of being a family with five children all four and under and I am really just starting to get my footing. So taking the kids to church by myself (because my husband does not attend) is very stressful for me. I would see other large families who had their children all sitting calmly, or at least calmer than one screaming in the halls and four other kids that still need some help, and I would feel like I must be doing something wrong. It seemed like it was just too hard. 

The final stress of our Sundays lately has been the insane number of things that has happened to our family in the last few months- multiple surgeries, injuries and kids who were sick for about two and half months straight. So we missed far more Sundays than I am ok with- so while I was trying to hold it all together in the middle of that storm if we missed church that week there were tears then too because I felt I was failing my kids.

It has been a crazy adventure lately. However, this last week was amazing. In speaking with Caleb’s therapists we decided that Caleb just cannot handle a three hour time at church right now. Not until he can communicate better and we can figure out what is setting him off or at least what helps make it better. We even figured out a way to make that work. Tyler will come with the kids and I to the first hour of church, the Sacrament meeting, and then he will take Caleb home while the other kids and I stay at church. Yay for a solution!

Unfortunately, Tyler had a medical procedure done Friday and was not up for coming this week. I decided to take the kids and leave after the first hour, when a dear friend volunteered to drive the big boys home allowing them to stay for Primary. I woke up with a different mind set than I had in the weeks prior. I was not filled with a sense of dread, instead I was confident that it would all go well. I knew that my kids would still not all sit calmly in a pew and I also knew that Caleb might have some moments he struggled but I was sure we could navigate it. The kids and I went to the Relief Society room so that the youngest three (2, 2 in 6 days, and 10 months) could move around a little more and not fuss because they felt stuck. Caleb does better there than he ever does in the chapel. Everything went great! I mean the younger kids were running around like little terrors but they were not crying and the big boys sat fairly quietly. I realized the key to a calmer Sunday is for me to keep things easier for Caleb by letting him leave after an hour and to realize a successful day at church for us will look different in reality right now than it did in my head. Managing realistic expectations and realizing success to us will look different than success to other families is the secret. I am so proud of all five of my little miracles.

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For more information about sensory processing disorders visit The Sensory Processing Disorder Parent Support website. 

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From all my reading on the subject of homeschooling I find relief in the knowledge that I am not the only Mom who has felt a bit like I am riding a merry-go-round in my head on the subject. I find myself literally mid thought changing my mind on the subject and the closer we get to our oldest being of age to start Kindergarten the more frantically the merry-go-round seems to spin.

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Merry-Go-Round

To homeschool or not is a thought that dominates my mind lately, no matter how many times I remind myself that the decision doesn’t have to be set in stone I still feel like this is the pivotal moment for the decision to be made. Damien currently attends a specialized Preschool where he receives the extra support he needs to succeed. He loves his school, loves going and his teacher is phenomenal. If this had been our only experience with preschools I would feel fairly confident (despite my original plans to homeschool) sending him off to Kindergarten next fall, unfortunately this has not been the only experience we have been through. Damien was enrolled in his current preschool before we finalized his adoption and it was part of the local county supports he was involved with before joining our family. With the idea of kindergarten looming we decided it would be a good idea this past September to enroll him in Head Start so he could experience a more Kindergarten-like setting (his current preschool only has 6-8 kids in a class and is only two days a week). Head Start was complete disaster that ended in me pulling him from the program and filing both state and federal grievances that lead to an investigation. Without getting into the specifics of what happened at Head Start the situation involved many of my main concerns with public education; lack of trauma informed care, no acknowledgement of the student as an individual, rigid policy with no reason, etc. We returned Damien to his original preschool and things returned to normal and now next week we have a meeting about transitioning him to Kindergarten and I am so worried. I worry about a repeat of the Head Start debacle. I worry about class size. I worry about my son who struggles with transitions succeeding in a traditional public school setting. I worry he will lose some of the magic that makes him Damien as he conforms to the school norms. I worry about the focus being on standardized tests and not on creating a lifetime learner.

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I love the idea of homeschooling and I could write an endless list of the reasons to homeschool so in that way it seems like a no brainer and yet I still go back and forth. I am concerned about sending Damien or any of our other children to public school and I am also slightly (sometimes extremely) worried about my ability to successfully homeschool all five of our children and meet their various needs. When I imagine us five years down the road I can picture an amazing homeschooling rhythm and I have so many lesson ideas I cannot contain myself, however when I think of getting started with school next year I get so nervous and I feel frightfully unprepared to juggle my first year of homeschooling and four younger children at the same time. I worry about the logistics of getting them all to the various extra activities I want to involve them in if we homeschool to add more diverse experiences and socialization opportunities.

Round and round my thinking goes. Decisions, decisions, decisions. Does anyone have a magic ball that can give me the exact right answer or some assurance that if I decide to homeschool I won’t fail my kids? Of course I know what I need to do in this situation, as with any situation when I am stuck, I need to take it to the Lord in prayer.

I pray for clarity.

I pray for courage and strength.

I pray for wisdom.

I pray to be sure the decision we make honors Heavenly Father and ultimately helps our children grow closer to Him as they grow into the amazing young men and woman they are becoming.

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We have gone from zero to five children in less than two years through adopting from foster care and that has been amazing and crazy in equal measures. It has also resulted in a life of crisis management, where I basically live crisis to crisis as our kiddos work through some very difficult challenges. I rarely have time to think too hard about tomorrow, let alone process all the big emotions I feel during the foster to adopt journey. Last Christmas Eve we were blessed to be able to adopt our first little one, who is now our middle child at 21 months old. We are now preparing to finalize the adoptions of three of our other children next month.

I recently went to complete all the entrance paperwork for our oldest child to start full time pre-school in the fall. The meeting started off as expected, lots of mind numbing repetition of “sign here”, “initial here and sign here”.  The school employee then nonchalantly told me that parent-teacher conferences happen three times a year. I felt like someone had suddenly plunged me into cold water- taking me out of the repetition and crisis management mode to give me a glimpse of the enormity of what is happening. Three times during this next year there will be parent-teacher conferences and I will be attending them as the parent. Wow. We really are becoming his forever parents- no prefix just his parents. It was not a foster parent-teacher conference but a parent-teacher conference. Suddenly the paperwork I was breezing through mindlessly took on new meaning.

We have felt they were all our children from the moment we met them but to know that soon they will be our children forever, legally, is huge. You would think that all the diaper changes, behavior talks, monster in the corner checks, snacks and cups made, boogers wiped and accomplishments cheered would make the parent word stick. Apparently it hasn’t sunk in yet. Thankfully, I have these glimpses that show me how much it hasn’t all sunk in and I can laugh at myself for being thrown by such simple phrase as “parent-teacher conference”. 

Years ago I worried we would never be parents. I was terrified of never getting the chance to see my husband tickling a squirming boy laughing and yelling “Daddy you’re getting me”. I thought I would never have small hands reaching up and eyes alight with cries of “Mama” as I entered a room. I prayed I would experience those things and part of me always felt sure I would but fear is sneaky. Fear will worm in to all of your hopes and dreams if you let it. 

We have one child’s case still up in the air and if these glimpses have taught me anything it is to not doubt the promises of The Lord. All things will work together for our good and the good of our children. I hope to soon to able to say we are preparing for our final adoption but I know if things turn out differently and our youngest leaves our home that as painful as that will be, Heavenly Father will have a plan for greater things for him and for us all. I am not letting fear worm into my hopes and prayers for an amazing future for any of our children, including the ones who don’t share our last name yet and I am reminding myself that I am for real and forever a parent now. Wow. Still seems too good to be true. 

Cabby and Baby Abby

****UPDATED FUNDRAISERS AT END*****

When I was fifteen I met someone who changed my life completely and irrevocably. Abby was my cousin Ilene’s fifth child and she changed life for the entire family. Abby was born with Down Syndrome and like many babies born with Down Syndrome she needed surgery to correct having her intestines separated, the hospital took Abby back for surgery when she was less than 24 hours old. Abby had an allergic reaction to the anesthetic and she coded (a cardio-pulmonary event) that resulted in her brain going without oxygen for fifteen minutes. Due to this traumatic event the labels and diagnoses attached to Abby grew to include Cerebral Palsy with Spastic Quadriplegia, Reactive Airway Disease, Sleep Apnea, GERD, Dysphasia, and significant Global Developmental Delays to name a few. After staying in NICU for a week Abby was taken back into surgery, given different meds and did great. She remained in the hospital another month before her family got to bring her home and begin adjusting to their new normal.

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Abby with her older brother Little Jimmy

During these early months of Abby’s life we spent a lot of time with them all and Abby and I bonded in a unique and special way. She opened my eyes to the world of children with special needs who fight every minute of every day to live their lives to the fullest and defy all the odds. The trauma for Abby and our entire family did not stop there unfortunately. When Abby was fourteen months old her older brother, Little Jimmy (two at the time), accidentally drowned in the family pool in the backyard. the pain and loss of this event are impossible to explain and forever changed the family once again. The next few years were full of family turmoil, as is often common after the loss of a child. Abby continued to grow and develop in the midst of this turmoil and she was still beating all the odds and doing things the doctors thought she never could, to include recognizing people, places and sounds as well as rolling herself across the floor.

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Fast forward to last year, when Abby was twelve years old and her doctors decided her scoliosis had gotten to the point that she needed spinal fusion surgery (basically placing rods in her back to keep her spine straighter). Anytime surgery and Abby are in the same sentence the family all gets a little nervous. Abby had her surgery and it corrected an 80% curvature of the spine to 40%. Abby’s one spinal surgery turned into four surgeries after she developed a severe infection. She ended up having to have an open wound vac and iv antibiotics for six months at home. In the middle of this latest struggle Abby began acting strangely and then one day her Mom couldn’t wake her up. Abby was rushed to the hospital with a blood sugar level of 1200 and in a diabetic coma. It was then that we all learned that Abby had Type 1 Diabetes. It took Abby three days to come out of the coma and she remained in the hospital for another nine days as she recovered.

Today Abby is a lot things; the most important parts of her are often overlooked. She is a fighter, stubborn as can be with a huge heart. She loves hugs, kisses, toys that make noise and being around people who love her. Currently Abby is wheelchair dependent, non-verbal and fed through a G-tube. Abby’s spine has to be supported at all times and she just received a new wheelchair tailor made for her. She clearly loves being able to comfortably enjoy the company of her family outside of a hospital bed.
Abby SmilingI got to see Abby a few weeks ago for the first time in years. I cried as soon as she grabbed my hand and the moment I saw comprehension cross her face as she remembered me and starting pulling me close for continual hugs. I also got to see how amazing she is doing and how hard her family is working to get her the best care imaginable. Abby has her new chair but her family does not have a vehicle equipped to get her around in so when Abby needs to go to the doctors (the only time she can leave now) she has to travel by ambulance. I have made it a personal mission to raise the funds to get Abby a van with a wheelchair lift so she can return to living a full and active life. If you can help me reach that goal I greatly appreciate it, if not please add Abby to your prayers and share her story of strength with everyone you know.

Cabby and AbbyIf you want to help Abby here are the ways :

Follow her story on FB : A Full Life for Abby FB Page

Donate and/or Share her Gofundme page: Get Abby a Wheelchair Van Gofundme Page

Shop the Thirty-One Fundraiser between August 1-14: Thirty-One Fundraiser