UPSTREAM

“ Unique Parents Striving to Educate and Advocate for their Miracles ”

Navigating the world and moving upstream while parenting a child with special needs from baby to adulthood is overwhelming and exhausting. There is a lot of “extra” in figuring out what options are best for your child and where to find resources that aren’t so easy to discover. We hope that this helps to paddle you through waves of confusion and choices, while supporting you with a secure, supportive boat and life-jacket on a river of parenting a child with special needs. 

Meet the Group! - We meet on the 1st & 3rd Thursdays at 8:30 am every month for coffee and support.

Location: Flying M’s Coffee House at 1314 2nd St. S, Nampa, ID 83651.

Our 1st meeting was in August 2024 at the Flying M coffeehouse. This is where the idea for this resource began.

NEW DIAGNOSIS

If you are joining our conversation here, it is likely that you have just received a diagnosis of medical and developmental challenges for your child. We welcome you! 

Hearing and accepting a diagnosis are two different actions.  Taking time to process and explore how this diagnosis affects more than just your child is an essential step in helping your child and family.  Each parent may have a different timeline and role in the family following the day of diagnosis.  Don’t ignore that any of the stages of grief may be visited as your expectations will be adjusted to your child’s capabilities and life expectancies. Sometimes you may hang out with grief at the same time you feel joy. We are here to help provide support, encouragement and resources to flow through these stages, albeit, upstream.  No parent ever holds their newborn baby and says, “I can’t wait to meet your occupational/physical/speech therapist!” Know that your intuition for what is best for your child is essential. Tap into it and learn to feel confident listening to it. 

Parenting is an incredible journey of highs, lows, and in-bet-weens that shape you as a person, your child with special needs, your family as a whole and creates a path of endless decisions. Our hope is the information offered here can help be your guide for the journey of special needs parenting and plethora of information that is not so easily organized.

JUDGEMENT JUGGLING FROM FRIENDS AND/OR FAMILY

It would be impossible to never receive judgment towards your parenting personality from a family member, friend, or stranger in the community. As human beings, we find ourselves observing others in a variety of ways.  As parents of children with special needs, we find ourselves often in the midst of unpredictable and often unmanageable situations. Expect this! Embrace this! Finding humor and perspective in those moments of chaos is easier said than done. If you can achieve this mentality, your whole world will be more peaceful than you can possibly imagine. Pray. Lean on your faith and understanding that support can be provided from a spiritual place of healing and miracles. Forgiving those in your life that cannot support you in friendship because of their own discomfort or overwhelm with your child is extremely difficult. You will never look back on this circumstance and regret forgiveness. 

Siblings and Family relationships

Caring for both, developing children and those with special needs, can be tough. Couples may handle their feelings differently, which can cause stress in the family. Counseling can provide support, but if that's not an option, it's important to create time to talk about feelings and hopes. Grandparents might question the need for services or diagnoses based on their own experiences. Here are some suggestions for dealing with family and sibling issues when a child has special needs:

  1. Date night with spouse

  2. Date night with each child

  3. Face-time, YouTube, zoom story times with grandparents if in person interactions are overwhelming for your special child.

  4. “All about me” books to help new people understand your child, be prepared for their needs, suggest ways to phrase things, what needs to be front-loaded, special diets, medications, emergency info, etc.  without having to take energy and time to talk to them when siblings/special child might be in ear shot. Recommend lamination to keep them from wear and tear. This also helps you from the exhaustion of having to explain your child over and over again and is especially helpful during holiday family gatherings or special events where there are unfamiliar people around your child. 

  5. Make “all about me” books for all of your children so they all feel special

  6. Create days of the week where each child can pick dinner, dessert, sit next to Mom/Dad, etc. 

  7. While your special child is at therapy, provide a special outing/treat/time to talk with your typical child(ren)

  8. Dopamine is released through kindness and service to others. Teaching all of your children to show kindness (by actions and/or words) to each other early in their years will help strengthen their relationships overall

  9. Play music and dance together! Maybe even learn to play an instrument. I started playing drums at age 38 and my brain felt like a piece of it came alive. Music has been studied to know that it facilitates serotonin release. This helps to lower anxiety, depression, reduce pain perception and provide a better sense of control over one’s life. Dancing also facilitates the release of serotonin, providing similar results as above. Movement helps develop new neural connections especially in executive function, long term memory and spatial recognition. You can’t go wrong with this recommendation!

  10. Guided meditation can alter brain waves, increase our gray matter and improve connectivity within the brain. This will help you with decision making and processing through the chaos of paddling upstream.

  11. Massage, yoga, spa day to pamper your own health

Traditional Doctors and Specialists

  1. Pediatricians

  2. Neurologists

  3. Special Tests: You may need to advocate for special more specific testing to find out more physiologically about your child. Some doctors will order initially and some may need to be asked. Assessing your child’s blood work can provide information about how their blood chemistry is working… or not. Checking how  efficiently vitamins are absorbed (B12 is a biggie!), if there are any food intolerances or allergies and/or possibly any genetic chromosomal abnormalities that could explain your child’s delays.

  4. Therapists

  • Physical Therapists: typically gross motor skills develop first during infancy and into childhood. PT’s work on strengthening your large muscles of the body, including legs and core, working on walking, running, stair navigation, balance, climbing, jumping, posture, and coordination. Primitive reflexes can be assessed and treated also.

  • Occupational Therapists: typically fine motor skills correlate into what we need to use to care for ourselves, or ADL’s “activities of daily living.” OT’s help to improve our ADL’s including self-care of hair brushing, bathing, face washing, hand washing, toothbrushing, all things related to feeding, sensory dysregulation concerns (the typical five of sight, smell, touch, taste, and hearing) and often vestibular or proprioceptive issues. Vestibular pertains to our balance system in our inner ears and can be underdeveloped for children with sensory integration disorder. These kids may be constantly touching walls, furniture, and people, spinning around all the time or afraid of movement in general, avoiding playgrounds or play equipment that is mobile. Proprioceptive input is what we call our positional sense. All of our joints have receptors in them providing information to our brain constantly about force grading, and the relationship between our body and the environment. Kids who hit, push, crash hard into things often have an unbalanced sensory system and would all benefit from OT. Additionally, OT’s help with emotional and social regulation to be able to participate with peers appropriately.

  • Speech Therapists: most people think about speech therapists helping with only talking. They do work on those skills which are called expressive language. They also help develop receptive language which is understanding what is being said to a child. Speech also includes pragmatic language which revolves around practical language interactions between two peers in a social setting, knowing what to say, when to say it and how to say something. Articulation refers to pronouncing words and all of the sounds correctly. Speech therapists also help set up communication boards of pictures and devices with apps for kids that are non-verbal.

  • ABA Therapists: Applied Behavioral Analysis is a type of behavioral shaping that many children with autism receive. It involves a thorough evaluation of your child and home environment to create specific goals to extinguish and reduce behaviors. Many kids with autism will be authorized for several hours a week ranging from 10-30 in their home or community environments. 

Naturopathic Medicine

Naturopathic medicine is an alternative option to explore from traditional pediatrics and western management of health.  Often, your child’s blood, urine, and stool will be analyzed to determine if there are imbalances internally in physiology. Supplements, medications, and sometimes alternative treatments can be helpful to reset and restore a healthy homeostasis internally. Often times, our children are fussy, picky eaters, have difficulty sleeping or being around sensory stimuli when their internal health is not balanced. Here are a few resources in our area to check out for your child/family:

  1. The Karlfeldt Center: https://www.thekarlfeldtcenter.com/

  2. Nampa Naturopathic Health Clinic: https://www.nnhealthclinic.com/

  3. Functional Medicine of Idaho: https://funmedidaho.com/

  4. Restore Health Today: https://restorehealth.today/

Infant Toddler Program

Infant Toddler Program (ITP) offers coordination of care for children birth up until 3 years of age. The Infant Toddler Program links children with services that promote their physical, cognitive, and social-emotional development and supports the needs of their families. In Idaho, services are provided at no cost to families.  Funding comes from private insurance, Medicaid, and  federal and state funds. Contact: 208-334-5514

These services are provided in the child’s natural environment. The focus is on developmental nourishment of motor skills (gross and fine), social emotional skills, adaptive skills (self help), cognition and communication. The team creates an Individualized Family Service Plan (IFSP) which becomes a legal document stating your child’s skills in all areas mentioned above, areas to address, goals for outcome measures and how often services will be provided. When your child is around 2 years, 9 months, the service coordinator can help transition your family to being evaluated by your public school district for continued care. The focus will then switch to educational development focus. 

Families can apply for services on their own, or their health care provider may make a referral.  Our services can include: 

  1. Physical therapy

  2. Occupational therapy

  3. Speech therapy

  4. Hearing and vision therapy

  5. Developmental therapy

  6. Service coordination

Clinic Therapies:

The outpatient therapy model of delivery is to focus on medical and developmental concerns of your child and focus on progress towards goals related to meeting milestones and increasing independence overall for your child. 

School Therapies:

The school based therapy model of delivery is to focus on educational concerns of your child and focus on increasing access to his/her classroom and school environment overall. Examples include: a school assessment doesn’t necessarily take picky eating, limited diet or nutrition into consideration (Clinic OT concerns and goals) but cares more about handwriting and coordination for using scissors, pencils, markers, crayons (Clinic and School concerns and goals).  If your child is uncoordinated and weak (Clinic PT concerns and goals) but can ambulate around the classroom and safely explore the playground (Clinic and School concerns and goals).  A child may qualify for both school and clinic based services, or only qualify for one and not the other. It can be confusing for parents, so these examples are provided to help delineate the differences between clinic and school rationale of therapy for OT and PT. 

IEP process

  1. Initial IEP: An initial IEP will be directed by the school psychologist. Evaluations can include any of the following specialists to evaluate baselines for your child: General education teacher, psychologist, speech therapist, occupational therapist, physical therapist, adaptive physical education teacher. Once all professionals have completed your child’s evaluations, a meeting will be held to present the results. This is called an IEP meeting or “Individualized Education Plan” meeting. This is supposed to be a team collaboration of your child’s strengths, weaknesses, services recommended, frequency and placement of services for a calendar year from the meeting. An IEP is a legal document that once you sign, is legally binding. It is recommended to leave the IEP meeting with perspective to take time to process and review what is being offered before signing. Often, the reality is that schools have budgets, kids with disabilities are costly, and more so than not, the bare minimum is suggested to save costs.  If you feel that your child needs a service or more of a service to meet his/her educational needs, ask for it! Don’t sign until you are happy and in full agreement with what is offered. In my opinion, annual IEP meetings never get easier. Expect for every professional to have weaknesses to share for your child, problems or troubleshooting and it can often result in a negative and depressing experience. It is emotionally draining to sit for a prolonged time listening to mostly negative remarks towards your bundle of love that you care so unconditionally for. Plan for that. Prepare your heart and mind to absorb first, process second and take time to examine. If a second (or third!) meeting needs to be scheduled, so be it!  

  2. Triennial IEP: Every 3 years, your child will have a similar process to the initial IEP evaluations. This is called the triennial year. The two off years around the triennial are updating progress on goals, but not retesting to measure standardized testing progress. Changes to your child’s IEP can occur at any time! You do not need to wait for the triennial or even the next annual IEP. You can call for an IEP meeting at any time of the year if a concern has arisen. 

  3. 504 plan vs IEP: Typically an IEP states services to be offered to your child AND accommodations to their school environment. Accommodations are things like more time for testing, ability to ask for clarification on standardized tests, scribes if handwriting is difficult or absent, ability to walk around the classroom when needed, etc. A 504 plan is typically written when a child is discontinuing with services and ONLY needs accommodations to be offered. 

  4. Special Ed Curriculum:  Don’t be afraid to ask to see the curriculum that is being offered to teach your child. There is not a standard of curriculum in Idaho special education that typically exists in regular education classrooms. This is an essential question to follow up with each year and with each teacher that is working with your child.

  5. https://www.sde.idaho.gov/sped/sped-manual/files/chapters/chapter-5-individualized-education-programs/The-Idaho-IEP-Guidance-Handbook.pdf

Home school Options

You have the right to decide to home school your child with special needs.  There are three methods to choose for your home school family:

  1. Join a home school public school charter: Your child’s attendance and grades are held through this public school charter. The same laws that apply to public school students apply to your family, but the schooling is done at home and not in a brick or mortar building. Your child can receive an IEP and services for therapy and educational support. 

  2. Join a private homeschool co-op or group. Your child’s attendance and grades are held through this private school charter and therefore your child is not eligible for utilizing disability services through an IEP. However, clinic based therapy is available.

  3. Filing an affidavit with the state for your own personal school. Your child’s attendance and grades are all organized by you and your child is not eligible for utilizing disability services through an IEP. However, once again, clinic based therapy is available.

What happens after 18?

Transition from public school 

Your student’s IEP goals should determine and regard if your child will be an independent decision maker after turning 18 years of age or if your child needs guardianship legally and unable to safely make decisions for his/her life. You may apply for guardianship when your child turns 18 years of age through the state. Guardianship is a court-ordered relationship between a competent adult (the guardian) and an adult with a disability. It is a means by which the law deals with the problems associated with an individual’s inability to make decisions and give consent, i.e., how to have someone act (consent) for others who are unable to act for themselves. Both individuals and public and private agencies may serve as guardians. 

https://www.sde.idaho.gov/sped/sped-manual/files/chapters/chapter-11-procedural-safeguards/Transfer-of-Special-Education-Rights.pdf

Work Options

  1. https://riseservicesincid.org/

  2. https://www.labor.idaho.gov/job-seekers/able-to-work/job-search/youth-in-transition/

  3. https://healthandwelfare.idaho.gov/services-programs/about-extended-employment-services

  4. https://www.indeed.com/q-special-needs-adult-l-idaho-jobs.html?vjk=77105a01e5170f55

  5. https://www.belongco.org

College Options

  1. https://www.uidaho.edu/current-students/cdar

  2. https://cwi.edu/support-resources/student-disability-services#types_of_a

  3. https://www.boisestate.edu/accessibility/students/resources-students/

  4. https://www.isu.edu/disabilityservices/

Certified Family Home (CFH)

This program allows you to certify your home for approximately $1000 of one time costs initially (home inspections, classes, application fee, background checks, etc.) that takes approximately 6-8 months to complete a certification for anyone 18 to elderly that is cared for in your home. You become certified to care for up to three developmentally disabled or elderly people in your home. Your hourly rate is tax exempt at $16/hour and there are some rules regarding receiving income. 30% or greater of one person’s income in the home must be taxable or the whole family on Medicaid. Continued education units are required at 12 per year and CPR class, online classes, doctors visits are all applicable to count for those. 

Community Resources for Special Needs Children (constantly growing list!)

  1. 10 mile Christian Church (support group and dinners every wednesday night) https://tenmilecc.com/special-needs

  2. St. Luke’s Rehab Hospital offers teen driving program https://www.stlukesonline.org/health-services/specialties/programs/teen-pathways-driving-program

  3. Darby’s dancers https://www.danceartsboise.com/darbys-dancers.html

  4. Boise music therapy https://www.boisemusictherapycompany.com/

  5. Idaho Parent’s Unlimited, Inc. https://ipulidaho.org/ 

  6. Aquatic therapy at YMCA in Boise, S. Meridian, and Caldwell https://www.ymcatvidaho.org/programs/p-aquability-at-the-y/

  7. Hippotherapy at Ride for Joy https://www.rideforjoy.org/

  8. ABLE account: https://www.lincidaho.org/able-accounts

  9. “My Places” community events for all ages and abilities www.myplacesce.org

  10. Sports for kids https://www.gamechangersidaho.org/

  11. Winter sports for all disabilities and ages at Boise Adaptive Snowsport Education https://baseidaho.org/

  12. Courageous Kids Climbing (indoor) for all disabilities and ages https://www.facebook.com/CourageousKidsClimbing/

  13. Sports for kids https://www.gamechangersidaho.org/

  14. Idaho special olympics https://www.specialolympicsidaho.org/

  15. Linc (resources for independent living): https://www.lincidaho.org/

  16. Rare Disease (home management, support resources) serving families within 30 miles from St. Luke’s Main Hospital  www.raysforrare.org 

  17. AAC Device non profit for idaho: www.lillysvoice.org

Nonprofits to Know for General Resources

  1. Rare Disease (home management, support resources)  www.raysforrare.org

  2. Make A Wish: https://wish.org/idaho

  3. Linc (resources for independent living): https://www.lincidaho.org/

  4. Easter Seals behavioral and mental health support: https://www.easterseals.com/

  5. https://ucp.org/

  6. https://complexchild.org/

  7. https://lookingglass.org/

  8. http://www.thearc.org/

  9. https://impactful.ninja/best-charities-for-people-with-disabilities/

Podcasts

  1. Independent Idaho on Spotify

  2. https://ipulidaho.org/news/ipuls-unlimited-parenting-podcast/

  3.  Mom's Talk Autism Podcast 

  4. Comadreando

  5. The Autism Dad Podcast

  6.  Two Sides of the Spectrum

  7. Autism Blueprint Podcast

  8. ASF Weekly Science

  9. Josh Has Autism

  10. Parenting Autism

  11. All Things Sensory 

  12. Not Your Mama's Autism (NYMA) Podcast

  13. Brave Together

  14. The Special Needs Mom

  15. Overcome the Overwhelm

  16. Take Heart

  17. Fight Like a Mother

  18. There are a bunch of awesome options in addition to these!

Make connections!

  1. Come to Mom support groups…US! 

  2. Church, Bible Studies, Prayer groups

  3. Clubs and groups of common interests

  4. Gyms

  5. Meet parents/caregivers in clinic waiting rooms

  6. Online resources and connections

  7. https://differentdream.com/

  8. Instagram pages and Facebook groups