Monday, November 29, 2004

November 29th, 2004

Our house is almost empty…one more guest to leave. Things will get back to normal. Jakob was amazing! He played with everybody, made great eye contact, let everybody know what he did and did not like…only one meltdown the whole week! And that one only lasted for a few minutes. I’m so glad it happened while I was home…I seem to know the fastest way to get him out of it. I really think one reason he was so good was the crash corner I built. In our living room (away from the tv), I have a corner that’s all pillows…all different colors, sizes and textures and he just rolls around in it. One of his therapists suggested we do it and I’m so glad we did. He loves it. He’ll stay in there forever. If he starts to get a little “over-stimulated”, he goes in there to self-regulate and get himself “organized”. It’s great. He’s always pulling Kenny and me in there with him to hang out, talk to him and bury him in pillows. I think we’re having as much fun with it as he is. I try so many different things that I think he might like…it’s so nice when I find something that he does!

Our friends and family are just so in love with him…he is such a great kid. He’s sweet and so funny and his disposition is so pleasant. I can tell that Kenny hasn’t told his family a lot about his problems. And whenever I try to explain what’s going on, they just say “he’s fine” or “all kids do that”. It can make me feel like I’m crazy…I have to constantly remind myself that I’m not. Jakob is going to be fine, we all are. He just learns differently, he has a different perspective. We need to figure out the best way to reach him.


Wednesday, November 24, 2004

November 24th, 2004

Jakob is just awesome, he’s so cute. He makes everyone laugh. It’s so wonderful to see my son through someone else’s eyes. Jakob’s Godfather and his family have been here since Sunday. They haven’t seen Jakob in two years and I was nervous that he would ignore them. That’s usually what he does with all visitors except for my parents. The McCarthy family has been waiting for this visit and really looking forward to seeing Jakob so I crossed my fingers and hoped for the best. Jakob’s been amazing. He took right to all 3 of them. He’s been dragging them all over the house, playing with them and even snuggling up with them!!! I can’t believe it…I’m so thrilled and they’re having a blast. They keep saying what a great kid he is…he’s happy, his disposition around the house is great and all of his little quirks are so endearing. They’re absolutely right. Kenny and I don’t have much of a support system here outside of Jakob’s therapists. We have some friends but not like we’ve had before. I think life must be easier if you have a lot of family close by who know you and know how to help. It’s easy with our situation to get caught up in the clinical side of Jakob and we forget to just enjoy him. So far this week, I’ve really been enjoying my son and not worrying so much. This is gearing up to be a great Thanksgiving and we have so much to be thankful for. Happy Thanksgiving, enjoy your friends and family…


Monday, November 22, 2004

November 22nd, 2004

Let the fun begin! Our houseguests have begun to arrive for Thanksgiving. Jakob’s Godfather, his wife and daughter from Florida got in last night. The few days before we get company are always a little stressful for Jakob. We get busy getting stuff around the house ready and that throws him off his usual routine so he’s been a little “off”…cranky, fussy, difficult, disagreeable. The only way to fix it is to spend a lot of time comforting him and I haven’t quite figured out that balance yet…taking care of him and taking care of life. I think I have one thing figured out though…how to explain to friends and family what’s going on in his head. I have to stop telling people what he can’t do and focus what he can do. I’m gonna stop talking to them about the milestones he hasn’t reached and concentrate on the things he does do. He can smile, laugh, kiss and hug…he can let me know if he’s hungry or thirsty, if he wants to watch a video, do a puzzle or read a book. I’ll always know what he needs help with, I just won’t talk about it in front of him…only positive thoughts and comments. Stay positive is my motto for today. Hopefully he’s adjusting to the extra people in the house…they came all this way to just love on him…


Wednesday, November 17, 2004

November 17th, 2004

We had a decent night last night…at one point, I swore I heard Jakob say “no” to his father. It’s always impossible to know for sure but it sure sounded like it. He did a great job brushing his teeth before bed (thank God for electric toothbrushes) and then snuggled beside me and held my hand. When he gets that way I have a hard time putting him down. I’d love it if he’d sleep in the bed with me sometimes but that’s a bad habit to start and he’s not really interested in that anyway. He loves his crib with lots of pillows and blankets. He has had a dry cough for about a week. Kenny’s on his way to the doctor with him now…my paranoia is out of control, so terrified it’s more than just allergies or a cold. So tough to not worry. This is the hardest part about him not speaking, I so badly want him to be able to tell me what hurts so I can fix it.

Tuesday, November 16, 2004

November 16th, 2004

Due to the overwhelming response I received after talking on the air about my son, Jakob, I decided to start this journal. To those of you who reached out to me, I cannot thank you enough for your kind words and support. Anyone who has a child with special needs knows how much it means to talk to someone who understands. Your understanding has made me a better mother and a stronger person. Thank you. Hopefully, this journal will help other families who are facing similar circumstances and bring them strength and courage.
My son Jakob is my greatest joy. I never imagined I could love anything so much. He is the sweetest, funniest, most innocent and wonderful person I have ever known. I can’t imagine my life without him. No matter what any doctor or therapist may say about him, in my eyes he’s perfect.
Jakob turned 3 the beginning of September and I have known for about 2 years that something just wasn’t right. In every baby book I read under the heading “developmental milestones”, there were always at least 2 or 3 things that Jakob wasn’t doing that he should have been. Stuff like babbling, mimicking, pushing and pulling toys, turning his head at a loud noise, responding to his name, following simple directions and speaking. To this day, he still hasn’t said a single word consistently.
I had other concerns about Jakob. He would have meltdowns in unfamiliar situations. He never made any eye contact. He didn’t seem to notice or care when I entered or left the room. He had no interest in snuggling unless he was exhausted. Jakob always seemed to be in his own little world.
Being a first-time mother with no experience with babies, I believed our pediatrician when he said that all kids develop differently and I shouldn’t worry. I knew something was wrong but I held onto the hope that the doctor was right.
At one point, we thought we had his problem figured out…hearing loss. After running all the tests, we discovered his hearing was fine. That’s when Children’s Hospital and the Warren County Help Me Grow program became involved. We also got him started in private speech and occupational therapy. Everyone agreed he had Sensory Integration Dysfunction and there was a good possibility that he was on the autism spectrum. We still don’t have an official diagnosis.
Jakob goes to pre-school now and is making improvements. The meltdowns have pretty much stopped, he’s making better eye contact and overall he just seems calmer. He’s a happy little man who loves puzzles, numbers and the alphabet. I know we have a very long road ahead of us but I take great joy in every little baby step he takes…every little baby step is a huge step in our house.
In the past week, we’ve had some great accomplishments. He likes cutting with scissors (which 2 months ago he wouldn’t have sat still long enough to pay attention to them). He loves riding the escalator at the mall (a month ago he wouldn’t even go near one). And he spelled the word “quiet” with his refrigerator magnets (we don’t think he knows what “quiet” means but he sure can spell it!)
As Jakob’s mom, I have great days, good days, bad days and awful days. It’s a constant rollercoaster and I never know what I’m gonna get. Hopefully, when I pick him up from school today, I’ll see a smiling child who has had a lot of fun with his class. I’ll let you know tomorrow…
- Jenn