
We knew some of Jakob's prenatal history the day we decided to welcome him into our home.
I was scared to death as we were taking a baby I had originally said in our "pre- fostering rules" we wouldn't take.
Jakob's mom had been on methadone during his pregnancy and he went through withdrawl at birth.
I think the ONLY thing that swayed me away from our "no meth baby" rule was that he was four months old and through the worst of the withdrawls at that point. We had also been waiting for so long and I desperately wanted to go swoop this baby up the moment they called us about him. I wouldnt take it back for one second.
As time went on I slowly started finding out other things Jakob's bio mom did while she was pregnant with him. None of it swayed our love for him or our decision (almost from the day he came to us) to adopt him if he became available.
Jakob was exposed to alcohol during the entire pregnancy.
He was also exposed to crack and cocaine in the last trimester.
Jakob's speech has been delayed for some time. He's been in Early Steps since he was a year old and Early Intervention pre-school since right after he turned two. He also gets speech therapy privately once a week.
Jakob is a very BUSY little boy. He does have some pretty WICKED tantrums when he does not get his way and they can last a while. He has trouble paying attention and can't attend to anything for very long unless it's something HE is choosing to attend to.
All of these things are typical two year old behavior....I always have a hard time gauging how he should be acting because Makily was never a typical two year old.
Due to the alcohol exposure the adoption agency set up an appt for Jakob to be evaluated for Fetal Alcohol Syndrome. It takes months to get in to them which is why we just went for his evaluation last week.
I was impressed with the FAS clinic team. There was a child psychologist, a speech therapist, an occupational therapist and a physical therapist. They had me fill out questionaire's on Jakob's development and behavior. They each evaluated him individually and as a team. They also took pictures of Jakob's profile and straight on shots. These pictures were loaded into a computer program to intricately measure his features . Children with FAS have a handful of facial features that are sometimes commonly seen.
In the end they took us (me, Jakob and both my sisters who so NICELY both rode along with us for the 2 hour trip) to a conference room and gave their opinions.
They did not diagnose Jakob with Fetal Alcohol Syndrome or Effect.
He was diagnosed with "Sentinel Physical Findings Static Encephalopathy alcohol exposed".
So what the heck does all that mean?
Fetal Alcohol Syndrome has a spectrum much like Austism does. The diganosis he has been given falls under that spectrum and basically means that during development parts of his brain were damaged and/or did not form correctly due to the alcohol exposure. They explained that Jakob has some sensory issues (which I really didn't pick up on until they were pointed out to me, I'm used to seeing such SEVERE sensory issues with Makily that I didn't pick up on the small quirks Jakob was exhibiting). Most of the sensory issues they found were oral motor related. They also feel he would benefit from deep tissues massage, a trampoline (a small one for kids) to give him that deep stimulation to his whole body. They said he is about a year behind right now. We have only a hand full of words and lots of frustration because he just isn't able to tell us what he wants. It's getting better and he is making LOTS of progress. He is signing more when he wants a drink or a snack.
He will consistently say Mama, Daddy, bye, uh oh, no, yeh...and "HOLLA" (lol srsly he says HOLLA!) . At times he will try and repeat a word you said but it usually comes out garbled. He understands EVERYTHING you say to him though. I can say "Jakob give mommy the remote". He'll go get the remote and hand it to me, same thing with just about anything in the house. He said pretty over and over again when looking at a picture of Makily the other day but I can't get him to say it now. I do think part of his delay is because he is stubborn and does not like to be told what to do. He is very good to Makily, he LOVES her and will sit next to her on the couch, sometimes will get on her lap and BEAM if she shows him ANY form of attention. Usually she pats him over and over on the head or back and he just giggles. He holds her hand when they are in the car (that makes me teary just typing it), and when she drops her toy he will run to pick it up and give it back to her (most of the time he gives it back to her lol). When we stand her up he runs over and throws his arms around her and just stands there hugging her. She in turn patts his head or puts her hands around his neck and he thinks that's just great (hey he doesnt realize she's actually trying to strangle him lol).
They told us that children with FAS disorders typically have attention problems, impulse control and behavioral concerns. Of course the severity can't be known at this point. It may take years before we know exactly how this is all going to effect him. They did suggest we evaluate him for ADHD when he is five or six. FAS kids also usually need some sort of ADHD medication to help them focus at school and make learning easier for them.
So how do I feel about all of this?
I already knew it. I knew he would likely have issues from his prenatal history. I can't say I don't care because that's not true. I care, I do. In fact when they started talking about brain damage and saying words like "static encephalopathy" it made me cry. I was sad for HIM. Sad that he has these extra challenges in front of him.....and they all could have been prevented.
I think what I am trying to say is that my love for him is no different then before he had a "label". He is still MY SON. I love him just like I love Makily and we will do everything we can to help him.
I will say though that never in my wildest dreams did I think I would have one child with a severe genetic disorder and another one with alcohol induced status encephalopathy. I really never dreamed that I could have two children with those issues and be sane.
Maybe I am not sane anymore and that is why I am handling it all so well?!
Maybe part of me is convinced that all of this is just typical two year old behavior and by the time he starts kindergarten he will be totally caught up and I won't see any lasting issues at all from the alcohol exposure?
Maybe I'm in denial.
I'm not sure.

9 comments:
I am glad you were finally able to have Jakob evaluated! Grrrrrr. Reading what his birth-mother did during her pregnancy just makes me want to howl!
Girl, you just described my oldest son. He is 9 now. He has a Fetal Alcohol Effects and Sensory Integration Dysfunction diagnosis and was exposed to meth, crack and prescription drugs during the whole pregnancy. She drank to up to a 5th of Vodka, Tequila and the sort at least 3x a week. We knew it going in to the adoption.
The 2's were rough, I won't lie. He had severe tantrums where he self abused himself. He craved sensory input to the point he would be swinging from the chandeliers and letting go just to feel the sensation of falling. With consistant OT, we learned how to manage those behaviors. He was also severely speech delayed. We started intensive speech therapy when he was 20 months old and only had 2 words and 2 signs.
By the time he was 4ish, it was a different world. He was a long time graduate of speech and OT, he could speak above age level and we learned what activities gave him the most stimulation for his sensory cravings.
Now he's 9 and in 3rd grade. He still struggles with impulse control and controlling his emotions and his reading comprehension has required some extra tutoring. But he is an amazing, funny, smart kid. He does karate and swim team for his sensory input. As long as he is enrolled in something year long, he can control the sensory reactions. He's a whiz at math and can do the hardest math formulas in his head, but retaining the reading has been harder for him.
Have faith. We have every expectation that he is going to have a normal life with no leftover ill effects of his mothers poor decisions. He does not have an ADHD diagnosis and he is not medicated. I'm not against it but it would be a last resort, which he's nowhere near needing at this time.
Have Faith! Feel free to shoot me an email if you want to chat, Jakob (they even share a name, how weird is that?) sounds very much like my son.
Being 10 weeks preggo myself I stress over taking a tylenol or nausea meds so reading this makes me frustrated and angry. I am sooo thankful Jakob has you and Allen for parents. Just remember the stats they gave you on Makyli and see how far she's come. And just like his princess big sister, Jakob will do just fine! Love you!
My nephew is placed with us (they have not TPR'd the bio's yet). He is suspect for drug exposure, Aspergers, severe speech delay, poor impulse control, aggression, global developmental delays, sensory integration disorder and gross motor skill are abnormal. He is also a very loving little boy (he is 5) and we love taking him to experiance new things because he gets excited over the littlest things. He has only been with us since April and they believe a lot of his issues stem from being ignored. Lovely. For deep sensory we put him in gymnastics with our girls and it has made a huge difference! Strangers can understand 50% of what he says and we can understand around 85% now. 3 months ago it was 90% babble/baby talk that noone could understand. Gymnastics has helped him focus as well. I was having to show him everything "hand over hand" where now I can give him a 3 step command and he will get it totally correct with no further prompts 9 out of 10 times. I'm glad Jakob got a family who knows how to access services for him. It gives him a huge advantage!
Wow. Too bad about Jakob's birth mother. No wonder you guys needed to adopt him. Thank God he is with you! Sending prayers to you!
Sami
journeytofamily.blogspot.com
Reading this makes me so glad he is with you and not his birth parents. There is every reason to grieve for his past, but every reason to have nothing but hope for his future!
Glad to have an update from you and hope Edna is behaving herself!
So glad you are back to blogging! I've missed you! I just figured you were enjoying things with your new addition! Blessings to you and your hubby for taking in this beautiful little boy! It irks me to no end that his bio mom did that to him. It breaks my heart to see it, after everything many families go through staying healthy and still having a child with special needs or just even trying to have a child at all...and then you get these morons who take it all for granted...sucks! Sending you all love and hugs! Welcome back to blogland!
Thank God for Blogging Trish..I would have never known about this on facebook!! how did I miss this honey. Praying and knowing that it's all going to be ok. I love you.
Hey there! I am not spam, just checking in to see how Miss Thing and her little brother are doing. Peace, and love, and all the other wonderful stuff!
Post a Comment