Not Alone
Where parents can be real, refreshed, and supported in faith as we raise kids with special needs. Whether you’re caring for a child with physical, mental, behavioral or emotional challenges – we’re glad you’re here!
Not Alone might be for you if:
- You speak in acronyms GFCFSF, ASD, SPD, IEP, LRE, FAPE, ABA, ADOS, DAN, PDD-NOS, PT, OT, SLP.
- You’ve read enough books on your child’s diagnosis that you could practically be a doctor yourself.
- You stop going to experts for help and realize you ARE the expert.
- You consider an IEP meeting a date out with your spouse!
- You can whip up an amazing dinner free of gluten, dairy, and a whole host of other allergens.
- Your best friends in the world – the people who support you without question – are on Twitter and Facebook.
The reality is that a child with special needs may make it very tough for families to engage in ordinary activities, from Thanksgiving with the grandparents to soccer with the community. What’s more, parents may feel that their friends and family are uncomfortable with their child, critical of their parenting, or simply clueless about what it means to raise a child with a developmental and/or physical challenge.
Don’t forget to follow our blog! You can do that by clicking on the word “Follow” in the top right hand side of our page.
Not Alone is written by parents of children with special needs…for parents of children with special needs. They represent parents of children with a variety of special needs…autism, asperger, down syndrome, cerebral palsy, adult-aged children, adopted children w/special needs, medically fragile, and more. Here’s a sampling of some of our posts:
Special Needs Parents: I Give You Permission
Cleaning Up Urine And Praising God
Knowing that you’re Not Alone on this journey is vitally important. We all need people who will cheer us on, pray for us, and steer us in the right direction when we feel like we’re going off track. One of the benefits of sharing life together with other parents is that no matter what age your child or children are, and no matter what issue you’re facing at the moment, chances are someone else has been there.
More than anything, Not Alone is about relationships – with God and each other.
We realize that parents of children with special needs are in many different places in their journeys of faith. All of you are welcome.
Our relationship with Jesus is the heart of who we are and all we do. Our relationship with God keeps growing all of our lives and we hope that we can be apart of that journey for you…this is our heart and prayer for all of us.
We know what it’s like to have troubles. We know what it’s like to mess up…but we can always come back to Him again and simply say,
“Lord, please forgive me and help me this day.”
If you’ve just started a relationship with God for the first time or reconnected with Him, we’d love to hear from you. Please send us an e-mail at:
notaloneparents@gmail.com
Mike, love it. I’m a pastor’s wife with a a son on the autism spectrum. I have a autism spectrum disorders business and am involved inspecial needs ministry. I have a parenting blog launching next week at connectingonepieceatatime@blogspot.com. Thanks for this great resource you have launched.
I feel so alone sometimes. But I know I’m not, and I appreciate the ideas and support I get online. Thanks to everyone.
Great site. I noticed you have many categories of special needs (autism, aspergers, terminal, Down Syndrome), which is wonderful; however, you are missing an important one: undiagnosed. I am the mother of a 14-year-old daughter with significant global special needs who is undiagnosed. This raises additional burdens for the parents, such as finding someone to share like stories with, unknown future health issues, etc. I’ve learned to rest in the truth that God knows all about Rachel, but it hasn’t been easy. I’m sure other parents struggle with this aspect of special needs. Blessings.
I’m right there with you Julie. I have a 3 year old son with global developmental delays and hypotonia. We’ve seen what feels like every kind of specialist, run every test, tried every therapy, etc. and we still don’t have a diagnosis and in my heart I think we never will.
I’m sorry, Erin. I remember what those early days felt like. All I wanted to do was “fix” Rachel, to find out what was wrong, so I could make it right. Although I would still love to know the cause of Rach’s different abilities, that is no longer a driving force in my life. Someday (even if it is when I see Him face to face) God will make it known. For now I’m concentrating on coming alongside my daughter to help her fulfill the special unique plan God has for her in His kingdom on earth–addressing the questions: What is her purpose? What is her outreach? How can she serve others? How can I help her in her ministry? Am I in the way or being a good guide and supporter?
Don’t rush the transition. Stay close to the Lord and embrace your son for the perfect little boy he is–created to fill only a role he can in bringing salvation to the ends of the earth.
Feel free to connect with me again if you would like.
in His grace,
Julie
Hi Julie-our 19 year old daughter, Savanah was not diagnosed until she was 15. Not that we would have done much different but having a diagnosis gave additional insight. We had genetic testing repeated and sent to Baylor because the testing had come a long way since her initial genetic testing. Savanah was diagnosed with Smith Magenis syndrome ( see http://www.prisms.org) and it was a blessing to connect with other families walking the SMS journey. I loved your comment regarding helping Rachel fulfill her God given purpose-that’s where I am at with Savanah and God is so faithful! We have always been involved with many wonderful church related, special needs programs but educational placement has been such a challenge however- a year ago we were so blessed to have been transferred to Ft Lauderdale where our church, Calvary Chapel, has an extraordinary school with a class that is perfect for Savanah …to have her teachers and students come along side and also assist and encourage in her spiritual walk is God blessing us way beyond what we could ask or imagine! Every year we prayed for God to guide us to and provide the school and teachers that would be best for her and He has done just that! Staying close to Him over the years and knowing that He entrusted us with our children, that He created…. wow what an incredible privilege!
May God continue to bless you, Rachel and your family!
All Gods Best,
Kelly
With God, the best is always yet to be.
So nice to hear from you, Kelly! I appreciate the encouragement your story provides. I am past the “must-know” stage with Rachel, but yet … it would still be nice. We are praying through whether to have more genetic testing done. We are beginning many transformations, which are difficult but necessary. Rach will be moving to high school next year with a new para-educator and new teachers and a new building. Scary, but I need to rest in the truth that God will provide for her. We are also beginning the process of identifying a home for her when she is an adult. Not an easy decision, but she will need her own home that will provide her a rich, engaging, social environment, yet one that will also encourage her in her spiritual walk (especially difficult since most living communities are secular).
It is definitely an honor to serve the Lord by raising our children to serve and love Him.
Traveling alongside you in spirit.
Blessings,
Julie
Hi everyone,
I knew from birth (1999) that something wasn’t right with my daughter. But test after test just showed delays, and low muscle tone. I still felt like I needed a diagnosis so I could “fix” the problem. In 2009 after a TON of blood work and a urinalysis we found that she has a partial deletion of chromosome 15. The deletion has caused low muscle tone (cause crawling, standing, walking, bladder and speech delays) and she has a low IQ. Keep trying, you’ll find the answer!
Laura
Thanks for the encouragement, Laura, and for sharing your story. Curious: Did the diagnosis change anything you were already doing with your daughter?
Hi Julie,
I was told that since the genetic testing keeps changing, not to give up. To answer your question, no, it didn’t change how I was working with my daughter. I have always treated her like my other kids with much more supervision. She is very immature for 14. The paperwork and neuropsy test showed the intellectual disability that is what changed how she managed school. She had been in normal classes in elementary school. Katharine is a pleaser and loves to do “work”, so she was able to manage elementary school with an aide helping her in class. Plus the class size was very small. Middle school was another story. It was too much stress for her. She spent more time in the health room complaining of headaches and a sick stomach. So I called an IEP meeting and we all agreed she would be best in the LFI (learning for independence) class. This is her second year in LFI and she is thriving (as far as school work). She is mainstreamed, except for no English or History. She is with the LFI class one period and she take more electives. It gives her the independence that she wants but she is still very guided, which she needs. She is taking Math 7 again in 8th grade and they do make other accommodations for her. But to her, not seeing the D’s and E’s she has so much less stress. That is what matters to me.
The toughest part for her is making friends. The “normal” kids don’t understand her
Like all of you, I want her to be happy and continue to try. I do think that the diagnosis helped me feel like I have done all I can to get the appropriate supports for her. I don’t know where she will end up in her life, which makes me very sad. But I do know that she will always try and I can’t ask more than that from any of my children.
Next year is high school… God help us both!
Laura
PS… my nephew has born with IPEX (a rare autoimmune disease). When diagnosed he was reported case number 50 in the world! So knowing that my husband and I agreed to genetic testing for both of us and our daughter. Knowing also helps me inform my daughter as she gets older. What if she has children? Will they also have this chromosome deletion? The answer is yes. I also found out that both my husband and myself have all of chromosome 15, so it was completely random.I am not saying that you all should do genetics testing, just the though process behind our decision.
Thanks for the great information, Laura. It is so evident that you are a wonderful mother. There is much to consider with our children. I will be praying about it.