Becoming Parents of a Special Needs Child

We discovered a valuable book last month while we were in Little Rock recording broadcasts with FamilyLife. After hearing us record a show about starting a family, Dan Donovan of FamilyLife Publishing encouraged us to consider how we could help couples who might start their families only to discover that their child has special needs. He told us about Joe and Cindi Ferrini, a couple who have been working with Weekend to Remember marriage conferences, and recently released a new book called Unexpected Journey: When Special Needs Change Our Course. We appreciate the candor and encouragement the Ferrinis bring to a challenge that can push many couples to the breaking point. They are the next interview in our series.

What emotional or practical hurdles (if any) did you have to overcome in order start your family? 

While some families wait a long time to decide to start their families, or to be able to get pregnant, that was not what happened in our case. Of our three pregnancies, the first two were “first tries”. It wasn’t until we were trying for a third child that the “wait” began. It was five years of unexplained waiting. 

How did you handle the news that you were going to have a child with special needs? 

Our son was born after a very long and difficult labor. He looked perfect but had a large and misshaped head, which we attributed to the difficult labor; however, the shape and size never went back to what one might consider “normal.” We began to think Joey’s large head was what kept him from being able to hold his head up on his own. But that simple milestone took a very long time, and we were also noticing how far behind he was in all early developmental milestones. 

Each of us had different defining moments when we said, “Something isn’t right with Joey’s development.” For Joe, it was noticing “that look” in a person’s eyes that he often saw in dental patients who had special needs – but now he was seeing it in Joey’s eyes. For Cindi, it was seeing the children of friends who were much younger than Joey - far surpassing him in sitting up, crawling, etc. 

We both handled the news with denial at first. But as time went on, and he wasn’t improving, we struggled with anger and grief. It was such a feeling of hopelessness for both of us. 

How has having a child with special needs affected your marriage? 

Joey’s special needs initially affected our marriage by us clinging to God and each other. As time went on, we had to learn ways to “divide and conquer” different things going on in our life because it was often hard to take Joey places (any kind of loud noise or fast moving people would be too much stimulus for him and he would scream and cry - including going to church or visiting others in their homes – as a one-year-old he could barely sit up in a grocery cart, so it wasn’t safe nor easy to take him). One of us often had to stay home or have grandparents care for him. And for many years it just got harder and harder as the difference between what he should be able to do got farther from what he was able to do. 

Taking a six-year-old to church who wants to roll around on the floor was tough for us as parents, but it was tough for those around us, too. He couldn’t handle being in a kindergarten Sunday school classroom because he wasn’t able to do what they did, and he was too big to ask to put him with the 3 year olds where he might have been able to do some of what they did. So, for years, one of us would go to church for first service while the other stayed home; then we’d switch for second service. 

It was a strain. Everything we did (and continue to do) took so much extra planning that sometimes it wasn't worth the effort. While we have maintained a strong marriage for almost 30 years, it’s because we desired to give each other freedom to do ministry (separately and together), to have outside interests, etc. We've been very intentional and purposeful so neither of us would feel “alone” in the journey. We’ve had many challenges, struggles, and difficulties, but they have always given way to joys and victories. We've just had to “wait” for them! 


How has it affected your relationship with God? 

Thankfully, because we purposed to maintain a close relationship with our Lord and Savior, that has been a continued wonderful relationship; however, it hasn't been easy. There are times we’ve questioned why He allowed for us to have a son with so many challenges. There have also been times when the frustration levels of caring for our son far exceeded the victories - and we've felt at the end of our rope; but God has never failed us. He takes our questions and answers them (in His time) and He’s always been there for us – to guide us and love us through the tough times. 

What have you learned through the highs and lows of your “unexpected journey”?

 

Well…that’s why we wrote the book Unexpected Journey – to share those highs and low with others and to let them know it’s normal – perhaps a new normal, but what is normal for them. It has been QUITE a journey and on any journey or adventure, one has to expect highs and lows, good times and bad, times of frustration and joy. The simplest summary would be that we've watched our two beautiful daughters learn to help care for their older brother with love and sincerity. They've also shown themselves to be loving and caring young adults to other people and they're not afraid to stand up for people who are challenged. Most importantly, their love for the Lord is evidenced in their lives by how they treat others and how they live their lives. All of us have learned the value of life, what it means to sacrifice our own time as well as our desire to “get our own way” due to caring for another--we've come to recognize it as a privilege the Lord has given us. 

We did not start the journey considering it a privilege. The hard work, years of sleepless nights, and years of therapies, etc. were so exhausting, we did not always find joy in that journey. If the Lord would have asked us 20 years ago, “Would you like Me to heal Joey?” we would have said, “YESSSSSSS!” But today, we've learned so much about unconditional love and serving that we probably wouldn't answer in the same way if asked!



What advice would you give a couple considering starting a family, especially those who worry that parenting might bring additional challenges? 

The Lord WILL provide. All parenting is challenging. All parenting has its ups and downs - frustrations and joys. Jump in! Enjoy the "unexpected journey"  He gives you! 

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Joe and Cindi were married in 1979, have raised three children, and speak nationally for Familylife Weekend to Remember Marriage Conferences. Joe is a semi-retired dentist - in practice for over 30 years; Cindi founded Creative Management Fundamentals - seminars on life and time management. They serve together as associate staff with Campus Crusade for Christ They have lived their "unexpected journey" in the Cleveland, OH area." You can find out more about them, their ministry, and their book at www.joeferrini.com and www.cindiferrini.com.

Comments

[Gisele Tackla]

I am a longtime friend of the Ferrinis and know them from the time Joey was born. I thought I understood what they were going through. As I read their book I was amazed at how WRONG I was! I had no idea of the sorrow, the sadness of what they were experiencing, which is in part due to my own ignorance, but also because they endured all of it without complaining. Sure, we shared tearful times...emotions must be expressed and released in healthy ways, but there was never a negative "poor me" kind of attitude with them. They persevered in faith, telling the One Who allowed their circumstances all about how they were feeling- the good, the bad and the ugly, I'm sure. Their story will inspire anyone struggling with the hard reality of an"unexpected journey" of any kind and will offer the hope one desperately needs in living out the heart wrenching course they have entered into. I know they probably won't allow this, but in many ways, they are my heroes.

[MaryJo Libal]

The Ferrini family sure has shown a great amount of faith and love in their lives and the lives of their friends and family. They are a humble, caring and easy to love. I am glad to be able to share in their family's life... I am glad to be Cindi's sister!!!

[Julie Holmquist]

Thank you, thank you, thank you! My husband and I have a 7-year-old special needs son (cerebal palsy and mentally retarded). We celebrate our son, but sometimes we struggle with the physical demands and the emotional toll it has taken on us. We are currently seeking the Lord how we can help others in their journey of grief to the final destination of acceptance and celebration. I heard you on Family Life Today and am looking forward to reading your book. Blessings to you and your family as you continue to light the path of those whose diagnosis was just given and are groping in the darkness.

Julie Holmquist
Omaha, NE

[Cindy DiDonato]

I am a grandmother of a special needs child. I bought the book you wrote. It describes ironically the issues that my children are going through with my grandson. They live in Olmstead Township. He was diagnosed with cerebral palsey and hipotonia. He is 3 and just learning how to walk with the help of hours of PT and equipment. Their insurance only covers 25 visits of PT and they need $20,000 just to finish the rest of the year. They applied for SSI to just cover medical costs. They do not want money. They were turned down "because the make too much money." How do people of special needs children cope with this? Were you able to recieve assistance from somewhere or know of anyone else that did? This is such a big concern for the parents. I believe that they are really falling apart both phisically and mentally.
Sincerely, Cindy