Thank you Ashlee for sharing your caretaker story! It’s all about awareness, folks. As people become aware of our stories, we will see change and resources become available. In the meantime, if you want to support respite days, please consider a donation. Every cent goes to helping special needs families take a break.
Where do you live? What do you do? What does your current family structure look like?
We live an hour outside of Fort Worth Texas. I am a stay at home mom to 8 kids ages 18 down to 9. Four of our 8 have special needs and were adopted.
When did you first learn that your child would have special needs? Pregnancy? Shortly after? How did you feel? How do you feel now?
Since our children with special needs were adopted we knew when we were introduced. Our first adoption was of our youngest child Noah. What we heard was he has a rare genetic condition we’re not sure that he would live. I don’t know why we chose him with the outcome being so grim, but we knew he was ours. Our second son has down syndrome, and we specifically asked for a child with down syndrome when we were adopting. He came from foster care. Our third and fourth sons were in Bulgaria together in an orphanage. Misha has pan hypo pit and diabetes insipidus . Judah they said had CP. We would later learn that wasn’t accurate.
Can you explain your child’s specific needs and how these affect his and your day-to-day life?
Noah is 9 years old and has partial trisomy 8. Technical term Trisomy 8q2.4 He is developmentally delayed. He is small. He had feeding issues and breathing issues that both resolved. He does have a gut issues where he can’t digest sugar and starch. He is given a medicine before every meal and snack. He is still not potty trained. He is delayed in learning and speech so he receives PT, OT and ST.
Micah is 13 years old and has Down syndrome, reactive attachment disorder, adhd, and odd. He is delayed in speech and learning. He has behavioral issues that over time have been getting better. He gets PT, OT and ST.
Misha is 11 years old and has panhypopit and diabetes insipidus (DI). He has to take around the clock meds to keep him from going into adrenal crisis. He is extremely small mainly due to being in an orphanage. He was 20lbs at 5.5 years old when we adopted him. He has learning difficulty and a speech delay. He gets PT, OT and ST and must see his endo every 3 months.
Judah is 17 years old. He has severe osteoporosis, reactive attachment disorder, autism with catatonia, possible schizoid or schizophrenia. He is completely non verbal. He is severely delayed. He just moved into a group him this summer.
What are the biggest worries you face for your child? What are your biggest goals?
I worry about them getting sick because for Misha especially a sickness can lead to death. When he gets even a little bit of allergies it looks like the flu on other people. I worry about them not being able to speak properly and wondering if that will ever happen for us. I worry what will happen to them in the future if my husband or I aren’t here.
Do you have a transitional plan for your child when he/she ages out of school? Can you explain what this looks like?
No I do not. I know that I should but honestly we are just in survival mode right now. We take it Day by day. The boys are homeschooled so I can take my time with their education.
I’m a big believer in self-care. What are you incorporating to address this need?
I am also. For me I go to the gym. I also run obstacle course races. I love doing this.
I also believe breaks are vitally important for special needs caretakers and this is how The Lucas Project serves the special needs community. Are you able to get a break occasionally? If not, what hinders you from getting this?
I have been fortunate enough to have a wonderfully amazing husband who allows me to go for a weekend a few times a year or so away by myself or with friends. We also try to get away together when we can. We can only do this when we have people that are able to help us take care of our children. People that are trained in people that we trust. So if they can’t help us then we can’t do it.
I believe in seeking joy even when times are hard. How has being a special needs parent brought something positive to your life?
My children are amazing! They do bring so much to joy to my life. Seeing them smile or accomplish a goal we had just is amazing to me. Watching them laugh. Also having a kid or 3 with speech issues is always funny and humbling. We went to church and Misha was excited about a big bridge he saw and he just had to tell everyone about that “big bitch!” (Facepalm) Noah loves trucks but can only pronounce them F**ks. We laugh a lot!
How can people best approach or respond to your child? Is there something you wish other people understood?
Oh how I wish they would treat my kids like they would their kids. Expect them to be just like other kids and they will. If you expect nothing of them they won’t give you anything. I like to say my son has Down syndrome only when it’s convenient for him. Lol. I also wish they would invite them to their typical child’s birthday party. We never get invited anywhere. It’s really upsetting.
Finally, what is one takeaway you want others to understand about being a parent to a child with special needs?
We’re tired. We don’t deliberately ignore your texts or calls. Keep calling. Keep texting. Ask us out for a drink or to coffee. Keep asking. It’s exhausting but we will always choose exhaustion over not having our child.
I love your final takeaway Ashlee. Thank you again for your honesty and willingness to share.