My Child or Loved One was Diagnosed … Now What?
The other night I walked into my autism support group meeting and saw a new couple sitting at the table. They were hunched over and looked as if they been through a wind storm. Their eyes seemed glazed over and their faces, pinched. My heart went out to them. One of the most overwhelming moments of my life occurred when the developmental pediatrician announced my daughter had severe autism.
I had no idea what to do next. Lifelong goals and dreams crashed around me and a sense of helplessness threatened to paralyze me.
I knew this couple felt the same. They were new in town and needed direction. I was so glad they’d come to our group.
I can’t tell you how much my support group has helped me. Aside from emotional support, my fellow parents of autistic children have given me direction. Just listening to the conversations when we get together has helped me find doctors, nurses, therapists, schools, dietary tips, parenting tips … The list could go on for pages. No matter what your child or loved one’s disability, I would recommend finding a support group.
How to find one? I stumbled into mine by taking a class offered by a large local church on parenting children with special needs. I have also seen flyers for groups at my daughter’s school and on community center message boards. Try calling a local preschool for special needs children. They often display flyers for support group meetings, but the groups themselves probably have more than just parents of preschoolers. Local therapy clinics may also have information—it never hurts to call and ask. Attend educational conferences in your area that pertain to your child/loved one’s area of disability. You’ll probably meet other parents and family members who can help you. You can usually find information on conferences from local therapists. As a licensed speech-language pathologist, I get flyers in the mail almost every day.
Also check with some of the larger local churches. Many are starting to have special needs ministries. It is not uncommon for the church to at least have a member who can contact you and help you get connected.
My other recommendation is to simply search forthe words “support group” and your city name in your favorite internet search engine. You can also include the type of group you are looking for: “Alzheimer’s,” “Autism,” “Down’s syndrome,” etc.
Overall, the worst thing anyone can do is become isolated. Having a community to support you can make all the difference.
How do you find support as a Special Need’s Parent?
We don’t attend a support group, but we do have a few close families who love our special needs kids, too. They provide a great, safe place for me to vent my fears and frustrations without casting judgment, and in turn, I don’t feel a need for “everyone else” to understand our family’s special needs because I have a few special people who do. By the way, tangledhouse.com offers help for marriages affected by special needs.
Thanks, that’re great info!
I am a mom of 3 children. My youngest is 3, next 8 and the oldest is 13, he has cerebral palsy, severe cerebral palsy. He was born with this and it has been ups and downs and lots of lessons. How do you explain sending a your special needs child to school (spec. ed) and getting a call a few hours later that he wasn’t being watched, fell from a stander, hit his head and ended up with a blood clot, needing emergency surgery and caused further brain damage, now he is fed thru a g-tube. All of this happened less than a year ago, it has hit our home hard and my marriage is under so much stress. We love the Lord with all our hearts, have for a long time, our children are growing up in church. Sometimes its still hard to process though…what is God doing?
Laura,
I wish I had a great answer for you. I don’t know why these kinds of trials happen. In my life, I look to John 9 (http://www.biblegateway.com/passage/?search=john%209&version=NIV) where the disciples asked Jesus why a man was born blind. They assumed it was a result of sin in someone’s life. I hear that kind of thinking all the time today, too. I have questioned my own past and wondered if something I did caused Rachel’s problems.
BUT Jesus told His disciples that the man’s needs weren’t a result of sin. Rather, it was so that the light of God would shine into others through the trial (my paraphrase). Does that make it easy? Not always for me. Does that make it a blessing to come when we get to Heaven? Yes. But Heaven is a ways away for us. I do take comfort in that thought, though.
I also love the passage in Philippians 3:7-14 (http://www.biblegateway.com/passage/?search=Philippians%203:7-14&version=NIV)
“But whatever was to my profit I now consider loss for the sake of Christ. What is more, I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish that I may gain Christ and be found in Him … I want to know Christ … and the fellowship of SHARING in His sufferings … I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.”
On a daily basis, I know there is still so much pain in your heart as a mom. I believe some of the greatest trails on this earth are brought to people through watching their children suffer. So, perhaps I cannot ease your physical burden, but I would hope to uplift you with the knowledge that God is sovereign and in the end He makes all things new. When I am feeling low, I think about Heaven and what it will be like. I picture Rachel talking and laughing with friends. I picture organization, a lack of messes, no weeds, and even the lion and pack of dogs I hope to have as pets. 🙂 Silly sounding, I know, but it gets me through the day. Even though life is temporary, each day can feel like a century when times are tough.
As for why you were chosen for this… I challenged a sweet mom the other day to flip her thinking on the “why” her child had issues. She, like so many of us moms, felt it had to have been something she did to cause the problem. I challenged her to thank God, instead, that He trusted her with one of His sweetest gifts. God loves each child more than we can fathom, more than we can love our own, which is A LOT. He entrusted us to be moms of some of His most special gifts. If nothing else, that is pretty special that God saw into your heart and knew that he could entrust you with the task of being what I call a G.I. Joe Mom (moms called to a high level of daily action and service) to a very special person.
Does this help? Please, forgive me if you feel preached to. I only hope to uplift you and encourage you. I will pray for you:
Father, thank you that You sit in Heaven and that nothing is too small or too great for you. Please give Laura the strength to handle all the myriad of challenges of the task you have set before her as a mom. Give her support and lift her up, the way that Aaron and Hur lifted up Moses’ hands in the battle with the Amalekites. (Exodus 17:8-16). Give her wisdom and strength so that she can climb the mountain set before her. Most of all, give her whole family your peace and amazing provision for the emotional, physical, and spiritual needs that only You can provide. Thank you for the amazing mom you created in Laura. Help her to see herself the way you see her. Renew and strengthen her marriage–there is such a strain and burden upon them! Please, be with them! Give them courage in addition to strength, so they can face each day as a team.
We love you, Lord Jesus.
In Your name we pray. Amen.
Jennifer, thank you so much for such a quick response, sorry it took me so long to respond. Your words are very encouraging. Reading this helps me alot, and no I don’t feel preached to. You are quoting my favorite verses. I have decided that I need to take me time. I live 10 min away from beach, so this morning I got up bright and early, walked to beach with Bible in hand, sat on sand and just enjoyed God’s word and His presence. Started out reading Psalm 139 and ended in Isaiah. After that I walked some more around pier and back home. Felt so good to get away and I plan to make that a part of my weekly routine, if not, daily. Thank you again for being there and for understanding.
With Love, Laura
I am looking for an article that you wrote titled, “50 ideas to inspire your Husband”. I found it at first on the family life website, but can’t find it to print it off again! It was great and I need to get a copy for myself (again) and a friend of mine. Mine had a glass of “something” spilled on it if you can imagine that! I have 11 children who all “didn’t do it!”.
I believe you can find it here:
https://momlifetoday.com/2011/03/50-ways-to-inspire-your-husband/