Jackson Development Update
I’ve mentioned here and there in my weekly blog posts, that Jackson has been behind developmentally for awhile now, and we have been in the process of getting him help for the past few months. So I wanted to take some time to write about it and this whole process—mostly for me to process, and maybe it can be of some help to someone someday…
When Jackson was born 5 weeks early, one of the first questions we asked was when we could expect him to “catch up.” When he was born, he was very healthy, a good size, and never spent any time in the NICU, so we were told he would most likely catch up by 2 months. 2 months came and went, then 4, then 6. Each new month brought about new concerns. We found it so hard to distinguish what was him being his own person (ie. not comparing to peers or siblings’ timelines), and what was him actually being delayed. Jackson has always been an easy, joyful little baby, so we tried not to worry too much. There were certain things here and there that we knew felt off, like not laughing until after 6 months of age. By the time Jackson hit 8 months old, we realized his gross motor skills were significantly delayed. Two big things were that he could not roll over in either direction or sit up, even when placed there. So at 8 months old, we referred him to what has turned out to be a crazy process called Early Intervention.
Early Intervention is New York’s program for infants and toddlers with disabilities. It is a free program, and all the therapy sessions can take place in your own home. It really is quite awesome that such services exist! However, I just wish it was easier to navigate and acquire said awesome services. I have so much more empathy for those who have walked through this process with their children now!
A friend warned me that it was a long process, so I filled out the paperwork when Jackson turned 8 months old, in hopes to get the ball rolling as soon as possible. We were assigned a service coordinator and an agency to work with. Several weeks later, Jackson had his first evaluation. This one was a multidisciplinary evaluation where she asked me hundreds of questions, “Can Jackson do this? Can Jackson do that…” After another few weeks passed, we had the second evaluation done—a more in-depth PT evaluation. She came over and observed and interacted with Jackson for about 15 minutes. Jackson had the biggest smile the entire time she was rolling him around and moving him all over, he loved it haha. After that, we waited even longer for the evaluation report to be completed. We finally got it the day before we left for Oklahoma. Before I had a chance to read over it, my service coordinator called to let me know that he hadn’t qualified for PT, but did qualify for a special education instructor.
We were pretty taken aback by this, as the whole reason we referred him was for PT and nothing else. But according to this report, motor skills were actually his least delayed areas. Now, in order to qualify for the Early Intervention program, the child must be delayed in 2 or more areas by 25% or 1 area by 33%. Jackson was delayed in multiple areas, but missed the gross motor delay by 5%.
That was a tough day. I read through two dozen pages all about the things my son is not able to do. Each sentence was a little stab to the heart. It was hard to read and take it all in. We love him fiercely, but every parent desires a normal, easy life for their child. I’ve gone back and forth about whether or not I should I even write a blog post about all of this, as it is very personal. But, writing helps me process, and I also hope that maybe it helps some other parent out there wading through these unknown waters.
In the past few weeks since we have learned about Jackson’s delays, I have wrestled with a lot of things internally. For example, I was able to be okay with Jackson’s delays when they were just physical, because I could comfort myself that they would of course just be temporary—he’d eventually learn to walk, and someday when he’s ten, no one would know any difference. But when things moved into cognitive delays, I had a very hard time with it. It has definitely revealed a lot of pride in my heart. I guess I take pride in my intelligence, my husband’s, and my children. And to think that something is off in Jackson’s mind, was just a hard thing for me to swallow. Not because I would love him any less, certainly not, but actually quite the opposite. I love him SO much, in a way that only a mother of a rainbow child can understand. And I want nothing more than a happy, easy, care-free life for him. I have no idea what these delays mean. It could be something where he quickly catches up in a year’s time, or it could be a lifetime of difficulty, we do not know. And I guess that’s the other hard thing for me—the unknown. I want to be able to fast forward and see Jackson at 5, 10, and 30 years old and be reassured that he will be fully thriving, but we just can’t. Ron and I have had countless conversations over the past weeks about what life could look like in the future, and while parts seem uncertain, two things are not: 1. Our love for Jackson. and 2. God’s love and care for Jackson. I keep coming back to this verse:
The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. -Deut. 31:8
The Lord goes before us. The same God who carried (and is still carrying) us through losing Roman, is with us right now. He knows my fears. He knows my anxiety. And he tells me not to be afraid. I know he holds Jackson’s future in his hands, and I trust him fully.
So back to the whole Early Intervention process…
I continue to see God’s hands at work in all of this. He is in the details.
A friend of mine has gone through Early Intervention with both of her girls and happened to mention me to her daughter’s PT who then text me a PT friend of hers in my neighborhood. This PT then spent time on the phone with me going over his evaluation, validating my concerns and encouraging me to fight for a revaluation of Jackson. This woman doesn’t even know me!
Then, after talking with another dear friend, she connects me with her sister who deals with all of this on the school age level. And wow, was she helpful. She read through his entire evaluation, made notes for me, printed out and walked me through my parental rights, and spent a lot of time coaching me through my meeting with the City to push for a revaluation. And I’ve had countless other people praying alongside me through this entire process.
So last Tuesday, I had a meeting with a city official to review the evaluation and set up our plan for Jackson’s special ed instruction. I spent hours prepping for this meeting—I went through his evaluation over and over, finding holes in it and highlighting the parts that were inaccurate; I had dozens of printouts to support; I even had videos of Jackson ready. I of course also wanted to get these SI services set up and underway, but my main goal was to get him approved for a PT revaluation. I was originally told that I could request for a revaluation to be done in 2 months. But I referred Jackson at 8 months old, and now at nearly 11 months old, he still has not started services yet. So if I waited another two months, and then go through this all again, he’ll be 15 months old before he gets PT, when I knew at 6 months old that he needed it. So I went in ready to fight for J.
Long story short, I won. haha. The city official could see that the agency I was assigned to did not do an accurate job with their reporting and Jackson’s abilities. She approved him for revaluation for PT, and also requested him to be evaluated for speech/feeding as well. I came out of that meeting on cloud 9! I’ve heard that it was out of the ordinary for her to do that. NYC is very black and white and strict with their rules. So I feel quite proud that I could be such an advocate for J. I hope every parent will be encouraged to always fight for your children, you are their biggest advocates!
And now, a week later, I am still in the throes of Early Intervention. We are still hitting obstacle after obstacle. For instance, Jackson’s file was marked bilingual, so he keeps being denied therapists that have been recommended to us because apparently the state requires a bilingual child to receive bilingual services, no matter if they are fine receiving english services. But I do know now not to be a doormat and expect my service coordinator to handle everything. No one cares for Jackson the way we do, and so I will continue to fight for him until he gets all the quality help he deserves.
We don’t know what the future holds for Jackson, but I do know who holds his future in his hands.
Come to me, all you who are weary and burdened, and I will give you rest. -Matt. 11:28