This Journey Our Life

31 Days of Support—Day 25: Interview with 3 Special Needs Moms

Education, Family, Special Needs, Special Needs ParentingRachel

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As I shared on Monday, an important aspect of this journey is learning from the personal experiences of other special needs parents.

I had the privilege of interviewing three different moms, each parenting a child with special needs. Today I’m posting their responses to my questions.  You’ll be blessed in listening as they share their hearts.

1. When did you begin your journey of special needs parenting?  

After praying for a baby for 5 long years, Eli was finally born in 1999. He was born perfectly healthy. We couldn’t have been happier! On January 9, 2003, when Eli was 3 years old, he fell from a second-story window at our home. He landed on the asphalt driveway below and sustained a severe traumatic brain injury. He has difficulty walking (he uses a cane or a wheelchair for long distances), vision and speech impairments, and memory and comprehension difficulties. He is known for his smile and the way he brightens a room when he enters it.  —Tricia Tiller from Tiller Family Ministries

Hannah, 18, high functioning autistic, from birth I know something wasn’t right, diagnosed at 3. JT, 12, moderate to severe autistic and mentally challenged with epilepsy and a Chiari 1 brain malformation (part of the brain is slipping into the spinal canal opening), diagnosed at 3 —Lisa, a family friend

When our third daughter, Carly, was born in 1998, we experienced some immediate challenges which grew into stronger clues that something unusual was going on. By the time she was six months old, we finally got cooperation from a doctor who referred us for developmental assessments. Carly was almost 9 months old when she started therapies for severe sensory integration dysfunction. It took almost 2 more years and a serious grand mal seizure before she was finally diagnosed with Angelman Syndrome when she was 2 ½ years old. Carly is now 14 and is an absolutely delightful teenager but with challenges in several areas. Carly is essentially non-verbal and has broad developmental delays including motor coordination challenges. She has a complex seizure history, a sleep disorder, and gastro-intestinal issues. Although it’s a marker for Angelman Syndrome, one of the tremendous blessings of Carly’s personality is that she is almost always happy.  —Lisa Jamieson from Walk Right in Ministries

2. What is a favorite tool or resource that you love to share with other special needs parents?

 We’ve participated with two groups near Philadelphia, PA that specialize in treating children with special needs. I would recommend either one of them. The Institutes for the Achievement of Human Potential (www.iahp.org) is for parents seeking a highly intensive therapy program (they require that the child be home-schooled in order to get the most out of treatment). The Family Hope Center (www.familyhopecenter.org) is similar in their approach but has incorporated some even newer treatment options. They are more flexible in their treatment plans. I would be glad to share our experiences with either of these two groups with anyone who is interested. Eli made significant progress while in their care. —Tricia Tiller from Tiller Family Ministries

For a public mainstream type of help, http://teacch.com/; for a different approach http://aut2bhomeincarolina.blogspot.comLisa, a family friend

The National Association for Child Development http://www.nacd.org/ has been our lifeline for over a decade. With their training, encouragement and experienced perspectives about everything from nutrition and educational methods to seizures and behavior management, we have been able to supplement Carly’s public education with home-based activities which have helped to improve her quality of life and ours in some very remarkable ways. We have also developed a number of valued friendships through our affiliation with NACD. With each passing year, Carly’s teachers have been incorporating more and more of her NACD program into her school day which is really great because everyone can see that it works very well for her. Our respite helpers also enjoy having purposeful activities to do with Carly. So we’re very grateful for what we learn from NACD to support Carly in the ways that are most targeted, motivating and efficient for her. Lisa Jamieson from Walk Right in Ministries

3. How do you balance your time between your child with special needs, and your children without?  

It happens naturally in everyday activities. In homeschooling a timer is used. Lisa, a family friend

This is really challenging and often involves making some hard choices. Making sure each child gets some undivided attention every day about something important and interesting to them has been very important to us. It has also worked well for our family to make adjustments in our focus as the different seasons of our kids’ lives have unfolded. My husband and I periodically step back and consider the needs and opportunities for our kids and make intentional (and prayerful) decisions about how we will focus our time and energy. For example, Carly’s first few years of life were more essential and foundational for her than at any other time. So we invested a lot more focus on her when she was very young. That was the hardest season in juggling parental attention so I’m very thankful that we have worked to become a strong team but we also had a lot of support from our church, neighbors and friends for a while.  

Asking for help was a huge step out of our comfort zone but we could not have raised our children as we have without it. Neither one of us has been able to be involved in parent leadership at school or with sports teams the ways we might have wanted but my husband and I have made a point of attending every game, conference and concert together while giving it our full attention. Some families can take their child with special needs a lot of places with them but that is very difficult for us because of the various ways Carly can become a distraction. We frequently arranged care for Carly so that we could watch without distraction — not just for our benefit but so that our older daughters knew how much we valued them.

When our oldest was in her senior year of high school, a lot more focus was on her activities and preparing her for college. Sometimes I felt badly for the other two knowing, for example, that I could be doing more homework with Carly and she might be making more progress. I’ve had to remind myself many times that sacrifices are necessary in every family from time to time and that I will never be able to do everything that can be done. I’m so thankful that God does some of His best work when we admit our insufficiencies and trust His faithfulness and mercies to prevail. —Lisa Jamieson from Walk Right in Ministries

4. In what ways do you and your spouse work to support each other along your parenting journey

Communication! When we get frustrated with each other, it is almost always due to a lack of communication. So, we work really hard at sharing our feelings. We make a point to never speak poorly of one another to others and we try to encourage each other. Forgiveness is an absolute must. We have to let go of the petty things and forgive each other for our mistakes. Tricia Tiller from Tiller Family Ministries

We pray and read our BibleLisa, a family friend

I’m very thankful for a husband with a sense of humor because that has helped ease me through some very stressful times. I have learned that taking a 15-minute power nap gives me an extra boost of evening energy for my husband. It’s lots of little things like that making a big difference. We have a date night every Saturday night with very rare exceptions. We try to do something outside of our home and have had to be quite creative through some very financially stretched seasons but we are committed to having one night a week together. If Saturday isn’t going to work, we make sure it happens another night. —Lisa Jamieson from Walk Right in Ministries

5. What is the greatest struggle (or fear) you face in your parenting journey and how do you deal with that particular struggle

 I have two. My present fear is that Eli would sustain further injury or serious health issue. The greatest risk factor for a brain injury IS a previous brain injury. Due to issues with balance, vision, memory, etc., I fear that Eli would get hurt again. My other fear is for his future. How will he do when my husband and I are no longer around? I deal with these fears first and foremost by covering them with prayer. I do my best to create a safe environment for Eli and teach him about God’s love for him. I feel his future is safe because he is in a relationship with God.—Tricia Tiller from Tiller Family Ministries

 I love how my friend Lisa shared several fears and what she uses to combat each one…

Fear/Struggle: How she deals with it:
Controlling meltdowns as they age and their physical abilities strengthen Praying Proverbs 3:5-6 and exercise
Trying to safeguard against wandering Alarms, constant supervision
Being alert at all times for the above as well as seizures Always keeping an ear out for seizures/ sounds; and coffee…lots of it!

Due to Carly’s sleep routine, I am often functioning on a high level of fatigue yet not always aware of how it’s affecting me (maybe because I’ve lived this way for so long now). I am often afraid of how sleep deprivation will affect our long-term health, our long-term ability to continue caring for Carly and how it impacts my relationships right now.  Especially when I’m tired, I talk too much and don’t listen enough. I am also inclined to be more emotionally intense (such as during discipline with our children). I worry that my approach to discipline is not always as effective or collaborative with my husband as it should be. It helps me to think about times for correction as opportunities for connection. Jim and Lynne Jackson have a great blog about this at http://connectedfamilies.org/ and book called Discipline that Connects with Your Child’s Heart.—Lisa Jamieson from Walk Right in Ministries

6. What is the greatest lesson you have learned from or through your child?

Patience. Oh my goodness. Just slow down. We are always moving at a slower pace than the rest of society and that is OK. Also, by example, Eli has shown me how the right attitude can take you so far! He has so much joy and can find something positive in almost any situation! Tricia Tiller from Tiller Family Ministries

Unconditional love, being direct with tact, seeing the beauty of life and miracles of God’s creation through the simple things others take for granted, cherishing each moment as the last. God taught this through them and we are forever humble and grateful. Lisa, a family friend

 I can’t fix everything but I can pray about everything trusting that God is always faithful and always gives good gifts. His answers won’t always look the way I expect or even hope for but I can always trust that what He does with my circumstances will be far better than what I could imagine. I’m learning that God cares deeply about what I care about but, more than anything, he wants me to keep my eyes on my relationship with Him rather than fixated on my circumstances.Lisa Jamieson from Walk Right in Ministries

7. What is one piece of advice you wish to share with other special needs parents?

We must constantly let our kids know that they are wonderful just the way they are. While we look for ways to help them overcome and cope with their challenges, they are not something to be ashamed of or hidden. They really are special and if we encourage them to hide their struggles, then we are telling them that there is something wrong with them. We are contributing to their feelings of shame. Instead, we should be teaching our kids to be happy that God made them who they are: individual, unique, and wonderful.  —Tricia Tiller from Tiller Family Ministries

You are your child’s parents. You know them best. When surrounded by professionals if this is the path of help you seek, tread carefully until you find the ones that respect that fact as well as help your child. Lisa, a family friend

Make sure you have some people in your life who are an encouragement to you AND who will help you grow in your faith. One paralyzed man in the Bible (Mark 2) was healed because he had four friends who took him to Jesus. But he experienced more than just physical healing, he was also spiritually healed (forgiven)! It’s important to have friends who will help you in practical ways but, in order to thrive both now and for eternity, you’ll need friends who will do more than just carry your mat around. —Lisa Jamieson from Walk Right in Ministries   

My thanks to each of these ladies for sharing so openly and honestly!

I trust your heart was as blessed as mine in hearing what these experienced special needs moms had to share.

rachsig3
 

Have an extra minute? Click on a box below to check out a three of my blogging friends also participating in the 31 Days series, hosted by the Nester:

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