Parenting a Special Needs Kid
Alright my friends, I have had a lot of thoughts recently on parenting a special needs kid, and wanted to share. If my thoughts seem confusing or jumbled, that’s all part of my life now! There are always so many thoughts going through my head about everything. So please bare with me as I try to share some. And people--this whole parenting thing is no joke. Standing ovation for all of you out there feeding into your kid’s lives everyday (special needs or not). The love and support you show them daily is shaping who they will become, and you’re doing a great job!!
So, I’ll start at the beginning. We had no idea when we first picked up our sweet little foster boy that there would be any type of special needs in his future. When he was about 6 months old though, I knew he should have been further along with the developmental stages. We lived in a small rural town, and didn’t have a ton of access (at least that we knew about) to services. When we did start services for him, we had to drive 1.5 hours each way to go to the appointments. It was exhausting for him AND for us. We ended up moving to Arizona for Ryan’s job when Caleb was about 16 months old. At that point, he could only scoot on his back and roll to get around. (He didn’t sit up unassisted until he was almost 2, didn’t start crawling until a little after he turned 2, and didn’t fully start walking unassisted until he was 3.5.) He’s now able to walk, jump, dance and he’s even trying to “run”. It’s so stinkin’ cute!
In the last couple years, Caleb has had a giant handful of different therapists, doctors and specialists, he’s seen a developmental pediatrician, had blood drawn to test for multiple “syndromes”, all with a smile on his face!
Being the momma of a special needs kiddo, I’m constantly asked what his “diagnosis” is. FIrst off- please ask! I LOVE when people are interested in Caleb and want to know more about him. He may be different than other kids his age, but he’s the same in a lot of ways too. (Encourage your kids to ask too! I recently had a young boy call Caleb a “baby” because I was changing his diaper. There is no way for the kid to understand why Caleb is different, but I’d love for him to ask!) With all that said, Caleb’s only real official diagnosis is GDD (Global Developmental Delays). Realistically, there is really no way for us to know if this will be a lifelong thing, or something that he’ll be able to “catch up” on. He has come SO incredibly far in the last couple years, and surprised us in a LOT of ways. I pray everyday that no matter what Caleb’s future is, God will protect his little heart from other’s thoughts and judgements and continue to give him that JOY that we see everyday, even if he remains “different” for life.
It’s interesting with Caleb, because I find I have certain expectations, but have no idea if those are realistic, fair, or high enough! I saw a quote the other day that said something about how with special needs parenting, “the parent’s expectations are put aside and the needs of the child are met first”. As a mom of a special needs kid AND a non special needs kid, this part is hard. Switching back and forth between parenting them is confusing and emotionally exhausting. It’s also super hard to explain, so excuse me if this makes no sense! This brings me to a whole other point though: being the sibling of a special needs kid. I don’t have experience in this area. I would LOVE if you do, if you would reach out to me, because I have a LOT of questions. I try SO hard to give both of my kids individual attention on a daily basis. But I will say...it is hard when there are always SO many extra things going on for Caleb. He has so many extra Dr appointments, school stuff for his preschool, PLUS 3 different therapies coming to our house 3 days a week. For those of you that know Paisley, you know she loves attention. So it’s especially hard for her that her brother receives a lot of the extra attention. I am by NO means a pro, and definitely still trying to figure this all out still, so again, if you’ve been there, give me all your tips! Along with that, I find it really hard to explain Caleb’s therapies to Paisley. I want to make sure she knows, as his sister, that he is a totally normal kid, but then at the same time, he’s different. My prayer is that Paisley grows up to love people of all kinds of needs.
Speaking of tips...IEP’s! Do those confuse anyone else? I won’t lie, my friends. I have extreme mom guilt when it comes to all of the technical legal stuff. It just all really confuses me. I know as Caleb’s mommy, it is my job to be his advocate. But I find that every time I go to a meeting about this kind of stuff that I just get so overwhelmed and confused that I just agree with what they say (for the most part). You other parents of kids with IEPs, does that get easier? We’re still in our first year of IEPs, so I am sure hoping so!
