The Champion Your Child Needs You to Be

An open letter to parents of special needs children:

Dear Mom & Dad,

You are amazing! You may not realize it yet but you are.  Life probably hasn’t worked out the way you expected it to but you can pick up the pieces and make something wonderful out of them. Summon every bit of courage you have and keep moving forward remembering that courage is not the absence of fear but action in the face of it.

Look for help and support in your community, it is probably there, not always easy to find but if you search for it, it will be found. NEVER EVER be afraid to ask for help.  Sure, the answer you get may sometimes be no, but do not let that deter you.  Keep asking, keep looking, keeping dreaming of the best life your child could possibly have and let that be a driving force.  Your child needs you to be their champion.  You may not be the expert on their diagnosis but you ARE the expert on your child, you know them better than anyone else does.  So do not be intimidated by service providers, their’ experience, their’ fancy degrees.  These people are usually fabulous resources and can be great advocates for you and your family, but if something isn’t working, say so.  If you need direction, answers, support, do not hesitate to ask for it. Use what is helpful and ignore what is not.

The way you see your child’s special needs and react to them, will set the example for how others respond to your child. The teachers your child comes in contact with probably are not experts on your child’s diagnosis either, and that’s okay.  Educate them about what your child’s special needs are, how they affect your child. Let your child’s teacher know your child’s strengths and weaknesses. If you have strategies that help with their weaknesses, share those.  You may have had to set aside the expectations you had for your child when you discovered their special needs, but that doesn’t mean you can’t have hope. Inform the people who work with your child what your hopes and dreams and goals are for them.  Inspire them to believe in your child as you do.

Your job raising a child with special needs is probably one of the most difficult things you will ever do.  But it can also be one of the most gratifying.  Remember to take time for yourself, yes I know this can be difficult to arrange but do whatever you can to make it happen. It is not a luxury that you can’t afford; it is a necessity that you can’t afford to do without.  You effectiveness in your child’s life is largely dependent on your emotional well being which requires rest and breaks and time away occasionally.  Do your best to build a support group around you that can help you with the needs of your entire family.  Make time for your spouse and if you have typical children as well, do everything you can to spend one on one time with them, and teach them to love and care for their sibling.  If you are so wrapped up in the needs of your special needs child that your spouse and other children feel their needs are ignored or overlooked, they could feel resentful toward that child. Help them to want to be a champion for their sibling as well.  

Know that God sees you and loves you beyond all measure.  God didn't give you a special needs child as some form of punishment.  In fact, the opposite is true, God has entrusted you with a very precious child and He is there for you to lean on.  Trust Him, let Him be your peace and your guide and your strength.  Allow Him to show you great & mighty things in the journey of special needs parenting and remember that His idea of great & mighty things are often quite different than ours.

I know, it is all so overwhelming and seems difficult to balance and manage everything. But you can do this.  Believe in yourself, rise to the challenge, don’t give up, don’t feel guilty for needing help, ask for it! Do not be intimidated by people who do not know your child as well as you do, make your voice heard.  Hope for the best, dream big dreams for your child.  You CAN become the champion your child needs you to be!

Sincerely,

A parent who has been there.

Autism Journeys

Hello,

April is Autism Awareness month. I know we're only in March still but it is a busy month for me and I wanted to be sure I recognized the cause. This is in honor of my son and in memory of a friend's son, Dakota Martin, who passed away several years ago. Below is something I wrote when I was invited to be a guest speaker for Friendship Group in Bedford, TX coordinated by my good friend Ellen Dibbler and recently updated. It is a tale about some of my journeys  with autism and learning about ministry as you go. Some of my greatest blessings have come from ministering out of my own needs. I know it is a bit long but I hope you are touched by it in some way or another. Thanks for taking a look.


When Ellen asked me to come, she asked me to share my testimony. As I thought about it, I realized that I don't have "A" testimony, but rather a life of testimonies because God has done so much for me in so many different aspects of my life. So then I had to ask myself, which testimony or testimonies did God want me share. I believe that he would have me share with you tonight one of the seasons of my ministry, and while it is my story it is also largely the story of two boys who God used to pull me into special needs ministry.

I never imagined how much work it would take to care for four children. They keep me going all the time. And, God definitely has a sense a sense of humor when he gives you children in which you can clearly see all of your own flaws. It challenges me each day to strive to continue growing myself and learning "What would Jesus DO?" if he had kids. I've been a stay at home mother for the majority of the time that I have been a parent and I have my own little business that I am able to do from home and include the kids in. I was also very active in the ministries of our church in Cleburne before moving away.  God has had me in a season of learning and growing and waiting since then but I look forward to when He opened the doors for me to be involved in organized ministry again.

The ministry part was prefaced by receiving an autism spectrum disorder diagnosis for our son Zachary when he was just 2 and a half. I immediately began to devour any reading material I could on the subject and attended a few support group meetings inFort worth. That was challenging since they were usually on a weeknight. My husband worked second shift at the time and it was almost an hour drive for me.

The fact that it wreaked havoc on the kids schedule with the nearly hour drive in each direction was another deterrent that was hard for me to get past. So when that support group asked for people to volunteer to be host homes in the more rural communities, I quickly stepped up to the plate and volunteered. At the first meeting we had a couple of service providers and one other parent show up.

Well, Debbie was actually raising her grandson who had a diagnosis of moderate to severe autism.
Debbie was a great source of knowledge and direction for me. But also a great source of inspiration. See, Dakota was 6 at the time I met his grandmother Debbie. He was nonverbal, slept very little, was an accomplished escape artist with absolutely no understanding of danger and an insatiable need for deep impact type activities. I admired Debbie for her strength and courage for this task she had taken on. Her challenges far outweighed mine and I knew how tired I was. And God began to birth in me the idea for a Spa Day, where women who were care givers of someone with a disability or women who had a disability themselves could come and be refreshed through pampering and encouragement. My pastor did everything he could to support this project and over the course of 5 years and through 2 more pregnancies of my own, we ministered to well over 200 women, starting with 11 women the first year and ending with just over 100 women to last year.

Debbie often worked as a volunteer during the planning process raising support from the community to make this happen and to be able to provide this service to the women who so needed it for no cost to them.

Early on, I also learned that because of Dakota's special needs, the family did not attend church. The church they had attended, didn't know what to do for Dakota. So off I went to pastor, and again he gave his approval and support and we found some volunteers, including Shannon and myself, and made a place for Dakota so Debbie and her husband Jerry, and Dakota's younger brother, could attend church. The family was so touched by this that they nominated the church for a Caring Church Award which we received.

I mentioned that Dakota was an escape artist, well on the Sunday morning that we were having a Disability Awareness Sunday, someone from Joni & Friends came to make the presentation of The Caring Church Award, and just after that as the pastor was preparing to give his sermon, up the isle comes Dakota. He managed to get away from his teacher that day. He jumps right up on stage with pastor as if he belonged there. Without missing a beat, Pastor introduced him and said that this was why we did this type of outreach ministry.

My husband and I sat with Dakota on Sunday mornings for a couple of years until Jerry took a new job, out of necessity, at which he was required to work on Sundays. Debbie and I still talked every couple of months. After some time had passed, I got a call from Debbie. Dakota was in the hospital on life support and not doing well, would I add him to the prayer list? I of course did, found a sitter for the baby and made my way to the hospital as quickly as I could. Over the next 2 days, I spent as much time there as I could, praying with the family, holding hands, talking about our times with Dakota. Debbie shared with me about Dakota's new school teacher who was wonderful. Dakota at the age of 11 was finally beginning to purposefully seek attention and communicate, both verbally and nonverbally, with his family members. This was a great accomplishment.

On the second day of Dakota's stay at the hospital, he was determined to be brain dead. Just 2 weeks after his 11th birthday, God called him home. I was blessed to be able to encourage Debbie and Jerry in the fact that Dakota was now in the presence of Jesus, singing the tune that he so loved to hum while he was here on earth, Jesus Loves Me, and running to his hearts content without anyone trying to stop him for fear he might hurt himself.

There's so much more I wish I could share in detail with you about the days that followed. But let me just say that I was honored and privileged to serve Dakota's family in his passing just as I'd served in his lifetime. The months to come even brought great restoration to the entire family and the rededication of Debbie's daughter, Amy, who was Dakota's mother. Amy then went on to get her life cleaned up through an intense discipleship program and last I heard was sharing the gospel with other women like herself.

I had often said over the years, that if even just one person was touched by God through all of the special needs ministries, it was well worth it. So with Dakota's passing and several years of ministry behind me, I found myself with 2 more of my own children than when I had started. The support group had fallen by the wayside. There weren't any plans for another Spa Day and there were no other special needs children at our church, besides my own son. I was exhausted and I discovered myself to be strangely out of balance. I had made the mistake of wrapping my identity up in the ministry that God had called me to instead of the God that had called me to ministry and my own family had suffered some along the way. I began to realize that Dakota was a season of ministry for me. I learned so much and was so blessed, never the less, that time was past.

The last several years have been a difficult for me. I'm learning to put everything back into balance, and while I believe that I am still called to ministry, I believe that ministry will take on a different form for a time, perhaps through speaking, I'm not sure. But I do know that God is faithful and true and that as I allow myself to be defined in His presence, that He will lead me. He will be my strength and my source.

In closing, let me just share a little about the other boy, who was really the beginning of my ministry with those with special needs. Dakota was the other, but my own son was the first. I mentioned that he got his diagnosis early on. His diagnosis is now Asperger's and I am amazed at God's hand in his life. When he was very little, before his original diagnosis, as I prayed over his bed one night, I felt like God was speaking to me, that He would do great things through Zachary's life. I immediately began to envision him being some great leader, pastor or Godly politician, or a leader in the military. When the diagnosis came and I began to understand that autism affected language and social skills, I thought how can he do great things for God if he can't talk to people or interact with them in a way they understand.

Wow, our minds are so finite. Over the years God has shown me he can do exceedingly and abundantly more than I can ask or imagine. But sometimes that means we have to lay down all of our expectations and embrace what is right there in front of us. Sometimes we have to be like Abraham and lay our promise on the altar and trust God to do what we can not imagine that he can.
Zachary started out this journey of autism having lost a vocabulary of 40 words by 18 months old, moving on to occupational, sensory and speech therapies, starting school in the special education classroom at 3with no verbal skills and lots of meltdowns. By kindergarten he was in a regular education class, a few years later he had a speaking part in our church's Christmas play and participated in playing basketball on an Upward league. He got out there every week and did his best. At the beginning, I thought what have I done? He was afraid of the ball, the other kids were all way better than he was. It was obvious that with all the busyness going on around him, that it was difficult for him to focus. But he never complained, he never quit and he was excited about doing it for a few additional seasons too.

As a parent it's hard to give up those what if's, what if he doesn't do well, what if the other kids make fun of him, what if he gets hurt physically or emotionally but can I tell you that when you see your child experiencing a measure of success in something you at one time thought they would never be able to do, you are blessed beyond measure.

In his middle school years he began playing trumpet in the band.  In high school he became part of the marching band.  He is well liked by his peers and his teachers.  He attends UIL competitions and does well in them.  God has truly done great and mighty things in his life already and when he graduates in 2015, I think I will need to take a case of tissue with me.  I can not even begin to tell you how overwhelmed I am by how far he has come in life. God has truly been faithful to my son.  Zachary, by the way, means "whom God remembers".

Let me leave you with these two thoughts:
First, Ec: 9:10 says "Whatever your hand finds to do, do it with all your might". Let me encourage you, to embrace ministry, whether it is to your own family or someone else's. Don't miss the season that God calls you too because it will pass soon enough. If you miss it, you miss the blessings and the lessons that go along with it. And in doing this, remember to allow yourself time to be defined in God's presence, by God himself. If you allow your identity to be wrapped up in what you are doing for Him, you will find yourself quite lost when that season has passed.

Second: Jeremiah 29:11 "For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Lay down your expectations and allow God to do in your life, in your child's life, exceedingly and abundantly more than you can ask or imagine. Don't miss a blessing because it's wrapped in Christmas paper when you're expecting birthday paper."

If you've stuck with this post to the end, I appreciate you taking the time to read this blog.