Caring for a Child with Albright’s Hereditary Osteodytrophy

Learn to balance #caregiving with #selfcare and everyone will be happier. http://wp.me/p2UZoK-AD via @blestbutstrest

 

 

Meet: Amee
Caregiver Connection: Amee’s siblings attended elementary school with my daughters, and I met her for the first time after her involvement in helping her alma mater (where I happened to work) win a half a million dollars in the Kohl’s Cares competition about six years ago.
Blog: Inspired Housewife
Who she cares for: Amee and Michael’s son, Tristan, has a rare metabolic disorder and has been diagnosed as being on the autism spectrum.
Favorite Bible verse: “Rejoice in hope, be patient in tribulation, be constant in prayer” Romans 12:12 ESV.

Almost eight years ago I gave birth to a beautiful 5 lb 1 oz baby boy named Tristan. He was our first and we were caught up in the bliss of everything newish baby.

Tristan was a tiny baby and we had many issues with his health from the start. He had some normal baby problems like latch issues with breastfeeding, but his biggest hurdle was he would not grow. He would eat and eat and eat and not gain weight.

http://wp.me/p2UZoK-ADLittle did I know that this trend would continue throughout his life. I have not thought of myself as a caregiver in classical terms like taking care of a very sick elderly person or children with much worse issues than my son, but I would say I am one in terms of the fact that many people could not or would not want to be my son’s mother because of the care he needs.

To make a long story shorter, Tristan was behind in all the typical baby milestones. At six months he got glasses, at seven months he was diagnosed with Albright’s Hereditary Osteodytrophy which is a very rare metabolic disorder, and at three he was diagnosed with autism. He is sensitive to gluten and dyes and because of that I had to actually learn to cook and not just burn water. Being his mother has been a journey and not one I would wish on any parent, but it is a journey that has made me a stronger and better woman.

The care for my son requires a lot of patience and dedication because he does not sleep much. He goes in cycles where he will sleep a good eight hours a night, but then he has longer cycles of sometimes four hours or less a night of sleep. These come on at will and nothing we change or do makes them stop. During these non-sleep cycles, one of us has to be up to manage him because it is unsafe for him to be up alone. We have alarms on all our doors and high locks because he is known to be a runner and has been found at 2 am running naked through our neighborhood.

I have to cook a special gluten-free diet for him, otherwise the gluten affects his behavior, his speech and causes him to regress. Before we took gluten out of his system he would scream 60-70% of his day and bite himself until he bled like a wild animal. It was a very rough time in our and his life. Our son has grown up in therapy rooms working hours and hours with various therapists and therefore I am called a “waiting room mom.” We don’t do the normal after school activities because most of our free time is taken up with therapies or other issues related to our son.

He also requires growth hormone shots due to his metabolic disorder, because without the growth hormone he does not grow. He lived in 2T/3T clothes for nearly three years which was hard for me as a mom, but great for the pocket book. There are a many things we need in place for our son to keep him from getting out of hand and it is completely exhausting both physically and mentally.

He is a wonderful little boy about to turn eight, but there are days as his caregiver where I wish I had a break. The stress of being his mom has acerbated my auto-immune disorder which I am told is not uncommon with most special needs mothers and caregivers.

To relieve my stress as a caregiver I go to therapy monthly to verbally vomit to a third party so I do not overload and overwhelm my husband. I also started back in January of this year making my own health a priority. Not only did I make major changes to how we ate, but I made sure that at least 4-6 days a week I worked out at home 30 minutes a day. Because of those changes I lost 16 pounds and 16 inches, my skin and hair have never looked better, and it helps me take care of all of my children way better.

#Caregiver parents have to make their own relationship a priority. http://wp.me/p2UZoK-AD via @blestbutstrestAnother thing my husband and I recently started, was making us a priority again after many years of putting our relationship on the back burner. We spend one 24 hour kid-free day a month while our nanny (who is experienced working  with special needs children) watches our three kids for us. In addition, we also started implementing date nights both in and outside of our home more often as well. We make sure to spend an hour of one on one time no matter how late it gets. By doing this, our family life has been completely transformed.

As a special needs mom and caregiver you go through a roller coaster of different emotions, but one of the things that has kept me sane is prayer. When Tristan was not even a year old and we thought we were losing him, it was prayers that got us through. When we needed to figure out how to get our son on growth hormones, prayer came through again.

There is a reason my son is the way he is. Prayers and the faith that there is a bigger picture out there that I don’t understand have sustained me in my caregiving journey.    (tweet this)

If you want to know more about the early struggles of our son check out “The Tristan Project” over on my blog.

Anita currently teaches English to 7th-12th graders. She describes herself as a 'recovering cancer caregiver' who gives thanks daily that her husband has been cancer-free for ten years.

Please note: We reserve the right to delete comments that are offensive or off-topic.

  • Pingback: Celebrate National Family Caregivers Month With Us | Blessed (but Stressed)()

  • I am so thankful that I have stumbled upon Anita’s site. Allow me to be very honest for a moment here… I think that motherhood can be so challenging (though so rewarding!) and I have healthy kids! When I read the stories I have been reading lately, I feel such compassion for what you moms (and caregivers) are going through. I am glad that my eyes have been opened to something that I didn’t think too much about before. Please know that I will be so much more intentional about keeping all of your in my prayers. Keep the faith and thank you for encouraging the rest of us.
    Heather @ My Overflowing Cup recently posted…Attitude of Gratitude: Thankful for Singleness {Guest Post}My Profile

  • I was not aware of this problem, so I learned something new today. Bless you for your attitude in caring for your son, because as a caregiver for my mother who has dementia, I know how much it can take from you — in all areas of your life. You are wise to take time for yourself, as well as your husband. There will be stars in your crown one day for the way you’ve walked through this. I understand some days are super hard. I’m having one today…but I sincerely want you to know that your words encouraged me. Thank you for sharing. I stopped by from the 31-day FB group.
    Blessings to you and your family.

  • Thank you for supporting a shedding light on so many brave, beautiful women doing extraordinary work in their daily lives. It inspires me to look closely at the stories of the people around me and think of how I can support them more in their roles.
    Colleen Mitchell recently posted…FMF: NoticeMy Profile

  • This is an amazing story and brought tears to my eyes. My husband and I had trouble reconnecting after my son was born and then he left for military training for 8 weeks. It was hard for me to be alone for so long. He still works long hours and is gone regularly, but we take time to connect after our son goes to sleep. It is nice to hear others have to put work into their marriage too. I like the 24 hours alone idea. 🙂 Might have to implement it. Thanks for sharing.
    Amanda recently posted…Look around and noticeMy Profile

  • What a nice story.
    Paula recently posted…PURPOSEMy Profile

  • You are amazing with so many other women and caregivers out there. Thank you for sharing, praying for an extra measure of grace and strength for you. I am reminded of the verse in Proverbs 31 that you are clothed in dignity and strength. Thank you for being a leading lady of an example of such tenderness and love.

  • Pingback: Personalized Holiday Table Cloths()