Special Needs Parenting, Some Ancillary Aspects & Encouragements

I recently stumbled across the below post through the WordPress.com reader…I wanted to expound on some things the author shared that I can really relate to…

via Raising Two Autistic Children and How It Has Affected My Weight

“At nine months pregnant with twins I weighted much less than I do now, ten years later. The years have not been kind to me that way sadly.”

I can attest to a similar experience, though I’m more than two decades from having my twins…

The author of the original post shares aspects of her journey in the early phase of diagnosis of some of her kids’ needs & the ensuing isolation & lack of self-care that were associated with these & other stressors.  I very much understand & experienced similar dynamics that still come into play in my day to day life…

“I was struggling with him outside of the house (and inside too where he would scream for hours on end) so I slowly but surely stopped going to anything with him. “

Unfortunately this is still true to some degree in regards to my life & caring for my special son, Josiah…He’s much better than he was as a younger child but still has melt-downs & needs A Lot of support that is fatiguing in multiple ways…

The author outlines some aspects of her journey of sleep deprivation, stress, & discomfort as “professionals” began to intrude on her home, her time, & frankly her psyche.  We special needs parents vary widely in the details of our tales but that aspect of our journey is likely parallel in so many ways.

For many years I literally felt as if I’d either been gut-punched or kicked in the face (or sometimes both) after attending yet another appointment where my son’s needs were the focus.  Adding new diagnoses & the intense implications of them & just attempting to process the new info acquired was completely overwhelming.  When these scenarios also involved battles to protect my son (like from educational malpractice) I was battling my own desire to retreat & lick my psychological wounds as much as I was battling a system that appears designed to only give an Appearance of helping the child/student.  Trying to achieve real-world tangible & measurable results basically made me come across as the “bad guy” in our numerous encounters with the (lack of) educational establishment…

“I felt I must be to blame for my children’s struggles since I was their main carer. I would read about autism being genetic and cry myself to sleep. I would read about early intervention and courses and wonder if I was doing something wrong since my child was 7, then 8, now 9 and still not talking at all. I felt guilty asking the NHS for nappies for my child as if I was somehow stealing from them. I felt guilt I was unable to work and pay taxes. I felt guilt at not noticing the autism in my daughter until she too was diagnosed a week before her 5th birthday!”

This is not my tale…& then yet again it truly is…I didn’t cry much (maybe that would have relieved some of the stress) but I carried A Lot of guilt…& confusion.  Where do we go from here?  How do we (attempt) to fix this?  Who do I trust (when there is conflicting information)?  How bad a mom am I when I focus on my child with complex special needs but don’t address the “lesser” needs of my other kids, some of whom also had ADHD & needed various learning interventions…& on & on ad nauseum…

“It’s taken me years to accept my children’s autism. I have walked through the isolation, the lack of sleep, the stress and the guilt and though things are not without difficulties, I am in a much better place.

Then one day I realised: if I could accept my children’s autism then it was time to wake up and accept” technically accept “myself” where & how I am.

The author focuses on her weight as her current big issue to tackle.  Although weight is also a concern for me, I’m more in a place of trying to focus on aspects of my “health” & get those better under control.  In the real world, that means becoming more diligent about addressing my Type II Diabetes & becoming more compliant with medication, food, & lifestyle choices–all of which is still a work in progress.  Dealing with other health concerns is still a pending but more back-burner situation…I’m kind of a “one thing at a time” type of person of late…

“But I am making better choices…Change isn’t something my children like and it was so easy to settle into our unhealthy rut and stay there.

…

I don’t blame my children for my weight issue nor do I blame autism. It was MY reaction and MY choices combined with the social isolation, lack of sleep, stress and guilt that having autistic children brought that pushed me to seeking support in all the wrong places.

I know it’s not going to be easy but one thing having autistic children has taught me is that even when progress is slow it is so worthwhile.”

What an encouraging & hopeful place to be for the author.  For me this is still somewhat more of a goal to focus on than a dream realized.  I still have a long way to go.  Learning to make the small sustainable changes & then sticking with better lifestyle choices is now my aim & gets at least some effort from me & from my family…

 

Why don’t we start a list here, hmm???

Here are some further encouraging thoughts & images…& we are Never alone as Our Father sees us all & can provide us with the peace, comfort, strength, & hope we need to keep going on!

Please note many of these images reference a website, most of which I have not visited, nor have I read any of the books whose covers might appear below…so I’m not Endorsing any of this material, just sharing it in case it might lead You to a place of hope & healing…God Bless!!!  Below all the images I’ve included many links to most of the sites the images come from…& a bit more too…Blessings!

Of course from my perspective our belief & hope should be in the Lord…but I appreciate the gist & the image above…

 

 

 

 

 

 

 

 

 

I found all of the above images using various bing.com image searches.  I also attempted to find as many of the source sites as possible.  Here are the ones I found in no particular order.  Note sometimes the site on the image isn’t the same as the one that ultimately popped up on several of these search attempts…There may be various sub-sites or other clips included also…

https://asymphonyofpraise.com/

https://asymphonyofpraise.com/blog?category=Scripture%20Writing

“I started The Felicity Bee in 2016 and only in the hands of The Lord has it become what it is today. What started as a little blog in the middle of a dark season of my life has turned into a thriving ministry that is reaching people around the world.

Steven and I have been in much prayer over the direction the Lord wanted to take us, and in 2018 God moved on our heart to rebrand and expand our ministry. With that, came a name change. The Felicity Bee became known as  A SYMPHONY OF PRAISE. 

A Symphony of Praise is a ministry, a classroom, a blog, an oasis, a place for healing, and a place to be refreshed. Its pages hold Scriptures, worship, peace, joy, and love. It is a place that strives to show you that you are a masterpiece. Your life, with its messy notes and out-of-tune seasons are being formed into a beautiful symphony of praise by The Chief Musician.

Through Bible Studies, Monthly Scripture Plans, an online Bible Study Ministry, and stories of real life; raw and redeemed, we exist to point you and those you love to Jesus and to His purpose for your life.”

https://specialneedsparenting.net/

I’ve read quite a few things from this site over the years & been very blessed by them!

“The special-needs parenting path can be a lonely one to walk. We want you to know you don’t have to walk it alone. We are a group of special-needs parents who are walking that path with you.

We know the heartache of getting a diagnosis and we also know the joy we can find in the smallest of accomplishments. We speak the same language. We’ve sat in IEPs, hospital waiting rooms, and in the hall during the church service. We push wheelchairs, prepare GF/CF foods, calm night terrors, and plan for our children’s futures. We want to remind you no matter where you find yourself today, you are not alone. “

https://specialneedsparenting.net/praying-scripture-over-my-child-with-special-needs/

Tweets by NotAloneParents

https://www.ellenstumbo.com/

“When my second daughter was born with Down syndrome, she challenged what I viewed as perfect, worthy, important, and valuable in life. I had wrongfully received her as a broken baby because of my negative disability attitudes, only to quickly recognize that I was the broken one. The treasures I have discovered along the way remind me that our greatest contributions are not found in our strength, performance, eloquence, or confidence. They are found in our own brokenness as we allow God’s love and compassion to transform our lives. ”

https://www.ellenstumbo.com/blog/

https://themighty.com/

http://amzn.to/2jcVMqh

https://itunes.apple.com/us/podcast/unexceptional-moms-hope-encouragement/id1153475023?mt=2

http://whydisabilitymatters.org/

https://itunes.apple.com/us/podcast/accessible-church-podcast/id1101444230?mt=2

http://courses.ellenstumbo.com/

https://themighty.com/2018/08/parent-kid-complex-medical-needs/

http://nathansvoice.blogspot.com/2015/01/if-you-are-raising-special-needs-child.html

There are a lot of interesting links at this page…

http://nathansvoice.blogspot.com/p/success-never-comes-solely-from-your.html

http://nathansvoice.blogspot.com/p/autism-communities.html

http://raisingtheextraordinary.com/

http://raisingtheextraordinary.com/isolation-special-needs-parenting/

http://sleepingangel.com/

http://blog.sleepingangel.com/

http://blog.silviaskingdom.com/

“Quotes have helped me tremendously throughout my life, so the quotes I post vary from “special need”, since I have a special needs child, to loss, since I lost a child, various wisdom quotes and, of course, some from my favorite shows. Outlander anyone? I am obsessed.

What’s in a name you may ask… why “Sleeping Angel”? I dedicate my work and everything I have done and I have become to my son, Alex, who was stillborn at full term. He is and will always be my “Sleeping Angel”. I wrote his story on my book called “Losing Alex“, available on Amazon on paperback, kindle and even as an audiobook.

His little brother Nicky was born 18 months later with a devastating condition called Epidermolysis Bullosa (Recessive Dystrophic).  At birth, the Doctor told us he had a year to live. He is now 21 years old. His skin is as fragile as a butterfly’s wing which can blister at the slightest touch — even from my cuddles. Normal day-to-day life causes constant pain and scarring, which leads to disfigurement and disability.”

http://blog.sleepingangel.com/?tag=images-with-quotes

https://club31women.com/

https://club31women.com/12-powerful-verses-pray-children/

https://club31women.com/how-to-recognize-and-cure-your-thirsty-soul/

https://club31women.com/11-special-life-lessons-ive-learned-from-our-special-needs-girl/

https://themighty.com/

https://themighty.com/2014/10/the-best-part-of-special-needs-parenting-no-really/

https://themighty.com/2015/06/20-things-parenting-a-child-with-special-needs-has-taught-me1/

https://themighty.com/2015/01/10-things-i-wish-someone-told-me-about-parenting-a-child-with-special-needs/

https://themighty.com/2015/06/18-secrets-to-having-a-strong-marriage-while-parenting-a-child-with-special-needs/

https://themighty.com/2015/10/18-special-needs-parenting-tips-you-could-only-learn-from-another-parent1/

https://themighty.com/2015/12/10-more-autism-parenting-rules-i-live-by-every-day/

https://themighty.com/2016/06/the-best-parenting-advice-from-a-developmental-pediatrician/

https://themighty.com/2015/10/when-parenting-a-medically-complex-child-affects-your-own-health/

https://themighty.com/2016/05/to-the-woman-at-the-pool-during-my-sons-sensory-overload-meltdown/

https://themighty.com/2018/01/having-hope-parenting-child-angelman-syndrome/

https://themighty.com/2014/10/kids-with-special-needs-are-not-given-to-special-people/

https://themighty.com/2015/06/what-being-a-special-needs-parent-is-like/

https://themighty.com/2016/05/letter-to-special-needs-mom-on-a-hard-day/

https://themighty.com/2015/04/what-people-often-forget-about-special-needs-dads/

Those TheMighty.com posts above came from internally searching the website for “special needs parenting” & most had multiple thousands of “likes”…

https://themighty.com/submit-a-story/

http://my-little-poppies.com/

http://embracing.life/

“This special needs parenting job is not easy. There is a unique struggle to keep the faith and keep putting one foot in front of the other when you’re juggling appointments and worries and griefs and a loneliness that few people understand, unless they too are a Christian special needs mother. I believe we can embrace this special life together, rather than alone and I would love for us to band together on this journey of learning to embrace this special life.“

http://embracing.life/specialneedsparenting/

http://embracing.life/praying-scriptures/

https://www.facebook.com/EmbracingThisSpecialLife/

http://embracing.life/prayers-i-pray-for-my-children/

http://embracing.life/embracing-gods-love-as-a-special-needs-parent/

http://embracing.life/watching-your-child-bloom/

http://embracing.life/special-needs-mom-isnt-something-fear/

http://embracing.life/im-thankful-special-needs-parent/

http://embracing.life/embracing-self-care-others-care/

http://embracing.life/releasing-expectations-embracing-gods-plan/

http://jenniferajanes.com/

http://specialhappens.com/author/JAJanes

http://www.comfortinthemidstofchaos.com/p/jennifer-janes.html

http://hsbapost.com/2012/11/19/winners-of-the-2012-homeschool-blog-awards/

http://jenniferajanes.com/category/special-needs/

http://jenniferajanes.com/category/christian-moms/

https://www.facebook.com/walkdownautismlane

http://beautifulinhistime.com/

http://beautifulinhistime.com/category/special-needs/

http://beautifulinhistime.com/2017/06/23/hardest-thing-special-needs-mom/

http://beautifulinhistime.com/2016/11/15/self-care-must-haves-special-needs/

http://beautifulinhistime.com/2016/09/16/special-needs-survival-series/

http://beautifulinhistime.com/2016/08/02/tired-moms-sabbath-rest/

http://beautifulinhistime.com/2016/03/13/special-needs-church/

http://beautifulinhistime.com/2016/02/16/self-care/

http://beautifulinhistime.com/2015/05/22/the-carousel-never-stops-turning/

http://beautifulinhistime.com/2015/04/05/i-think-theres-something-wrong-with-my-child-steps-to-take-toward-a-behavioral-diagnosis/

http://beautifulinhistime.com/2014/10/31/ultimate-list-of-encouraging-blog-posts-for-special-needs-families-and-those-who-love-them/

http://beautifulinhistime.com/2014/10/28/stressed-special-needs-autism-parents-relax/

http://beautifulinhistime.com/2014/10/16/we-called-him-superman-a-decision-for-special-needs-adoption/

http://beautifulinhistime.com/2014/10/11/dark-house-of-hope-pdd-nos/

http://beautifulinhistime.com/2014/10/06/embracing-my-sons-autism-a-dads-perpective/

http://beautifulinhistime.com/2014/10/04/making-a-way-in-the-wilderness-marriage-and-special-needs/

http://beautifulinhistime.com/2014/10/02/special-needs-family-life/

http://beautifulinhistime.com/2014/10/01/31-days-of-supporting-the-special-needs-family/

https://autisticmama.com/

https://autisticmama.com/best-blogging-resources/

https://www.loveliveson.com/

http://kristiclover.com/podcast/

http://www.shannondingle.com/blog//

“I love words: reading them, writing them, memorizing them, debating them, find just the right one at just the right moment. I love the Word made flesh, Jesus, and the way he casts light into dark places.

I love my people: my ever-patient husband, my six little ones from three continents via two births and two adoptions, my faithful friends who believe in me even when I can’t.

I love vulnerable people. I’m talking both about those people who need support or simply for someone to affirm their humanity with dignity and love AND those who are living boldly and inviting others to do so. When vulnerability and empathy meet, beauty is born. I’m certain of it.

I love stories, and I’m beginning to speak mine in ways I never have before, especially when it comes to be disabilities and history of childhood sexual abuse and trafficking. Some stories aren’t for public consumption, but I hope those I do share create a sacred space here and invite others to be brave with me.”

http://littlemamajama.com/

http://littlemamajama.com/30-early-signs-of-autism/

http://littlemamajama.com/2016/11/03/center-based-autism-therapy/

http://littlemamajama.com/2017/01/04/6-easy-ways-to-be-courageous/

http://littlemamajama.com/2016/10/24/24-self-care-ideas/

http://littlemamajama.com/2017/02/22/25-encouraging-quotes-for-special-needs-families/

http://donotdepart.com/

https://donotdepart.com/category/bible-studies/scripture-dig/proverbs-31

https://donotdepart.com/category/bible-studies/scripture-dig/ruth

https://donotdepart.com/category/bible-studies/scripture-dig/names-of-god

https://donotdepart.com/category/bible-studies/scripture-dig/ephesians

https://donotdepart.com/top-bible-studies-from-scripture-dig

https://donotdepart.com/5-ways-to-dig-into-gods-word

https://donotdepart.com/archives

https://donotdepart.com/god-and-special-needs

https://donotdepart.com/unfailing-love-through-illness-or-special-needs

https://donotdepart.com/faith-resources-for-special-needs-families-let-the-children-come

https://donotdepart.com/when-your-faith-community-fails-you

https://www.inspiringlifedreams.com/

https://www.inspiringlifedreams.com/how-to-be-your-childs-advocate/

https://www.inspiringlifedreams.com/category/parenting/special-needs/

https://www.inspiringlifedreams.com/special-needs-children/

https://www.inspiringlifedreams.com/our-bookshop/helping-moms-2/

https://www.inspiringlifedreams.com/our-bookshop/escape-time-2/

https://www.inspiringlifedreams.com/blogging-resources/

https://www.inspiringlifedreams.com/mompreneur/

https://www.clarissarwest.com/

https://www.clarissarwest.com/5-things-you-should-know-about-special

https://www.clarissarwest.com/embracing-special-needs-life

https://www.clarissarwest.com/19-bible-verses-for-special-needs-life

https://specialneedshomeschooling.com/

http://differentdream.com/

“Thank you so much for stopping by DifferentDream.com. The website began in 2009 as a gathering place for parents of children with special needs and disabilities. Over the years, Different Dream has expanded to include those caring for loved ones of all ages: Dads and moms in the hospital with seriously or terminally ill kids, parents whose children live with mental disabilities or chronic illnesses, those supervising adult children with special needs, wives and husbands caring for spouses with disabilities, as well as for adult children caring for elderly parents.

If you’re a caregiver, Different Dream offers resources to equip you to be a confident advocate and encouragement when you need a boost. You’re invited to engage in the caregiving conversation by leaving comments about resources or advice you’d like to share with others. Special needs bloggers can contribute to the Tuesday link share. Those interested in becoming guest bloggers can contact Jolene via email about Different Dream’s submission guidelines.”

http://differentdream.com/2018/08/when-autism-gives-courage-to-stand/

http://differentdream.com/category/special-needs-parenting/

http://differentdream.com/2018/07/9-characteristics-parents-raising-kids-special-needs/

http://differentdream.com/2018/05/successful-mothers/

http://differentdream.com/2018/03/bringing-darkness-mom-guilt-light/

http://differentdream.com/2018/03/community-essential-parents-kids-complex-medical-needs/

http://differentdream.com/2018/07/importance-community-parents-kids-complex-medical-needs-pt-2/

http://differentdream.com/2018/02/empathy-and-autism/

http://differentdream.com/2018/01/gods-enabling-grace-for-parents-of-kids-with-special-needs/

http://differentdream.com/2017/12/unqualified-for-special-needs-motherhood/

http://differentdream.com/category/ptsd/in-parents/

http://differentdream.com/2016/11/resolving-past-trauma-from-the-inside-out-through-self-understanding/

http://differentdream.com/2016/07/inside-special-needs-parenting-implicit-explicit-memory/

http://differentdream.com/2016/06/the-special-needs-trauma-no-ones-talking-about/

http://differentdream.com/2016/01/address-your-stress/

http://differentdream.com/2016/01/is-hypervigilance-a-cause-or-symptom-of-ptsd-pt-4/

http://differentdream.com/2015/12/top-ten-special-needs-posts-of-2015/

http://differentdream.com/2015/06/special-needs-parents-and-trauma-the-unseen-battle-with-ptsd/

http://differentdream.com/2015/02/stress-ptsd-and-parents-of-kids-with-special-needs/

http://differentdream.com/2012/11/stress-and-how-parents-of-kids-with-special-needs-handle-it/

http://differentdream.com/2011/09/self-care-for-the-caregiver/

http://differentdream.com/2011/07/4-ways-to-combat-special-needs-parenting-stress/

http://differentdream.com/2009/09/nicu-parents-and-ptsd-could-this-be-you/

http://differentdream.com/category/special-needs-parenting/self-care-and-stress/

http://differentdream.com/category/spiritual-support/special-needs-ministry/

http://differentdream.com/category/time-managementorganization/how-tos-and-resources/

https://ktscanvases.com/

https://ktscanvases.com/blogs/bits-of-biblical-truth

https://ktscanvases.com/blogs/free-wallpapers