Thursday, July 28, 2011

I Love Him

Since Jacob's hemispherectomy we have been at "wait and see" which is certainly better than "hurry up and wait" or "running scared". But the work is never done. Never. I am constantly reflecting upon Jacob's progress and where he should be, could be, or needs to be because where he is at is in itself the product of endless contemplation. Do not misinterpret as dissatisfaction because in fact I think Jacob is the most perfect being. His body however must be challenged and his brain must be driven to do his will. He is a busy boy and has so much to do. Speech. His vocabulary is growing, his articulation is improving but I do believe that he has expressive aphasia. This is not because of testing but because I know what he knows, what he has experienced. I know that he is intelligent. He has more to say. Mobility. His foot has healed. He still has all of his teeth. He will be stronger. He will be faster. He will participate in all things boy. I used to question at times if my motivation was a form of denial, an unwillingness to accept any prognosis. But I am not in denial. My only motivation is Jacob because he doesn't know and if I have done the work, he never has to know.

Friday, July 22, 2011


Jacob is going to be a Special Olympian. Someday. Or a Paralympian. The fall season of the Young Athletes of Tiverton begins on August 28th and will feature track and field, soccer, and tennis.

Today was our sixth "Mommy and Me" swimming lesson at the YMCA and Jacob is amazing. His right arm is generally rigid for the entire half-hour because his lower extremities are exerting so much force. Matthew and I attended the same class until he was 3 and he was never as powerful as Jacob. And he does this while his foot mends from a fracture 3 weeks ago.

The fracture still pisses me off but has had some therapeutic value. Jacob has been able to commando crawl for some time where his belly remains on the floor and he predominantly uses his left arm and leg to propel himself forward. For about 2 weeks, Jacob was unable to walk so he regressed to scooting on his butt. We would tell him no scooting and ask him to crawl and then... he got up on all fours! And he moved forward! An inch give or take. Since Jacob was 9 months old, Early Intervention has been targeting weight bearing through his right arm. And now finally 2 years later he decides to get up on all fours.

This as well as the discussion around Jacob's final IFSP (EI Service Plan) has taught me that Jacob is going to take his time getting to wherever he needs to be but he will get there. It may have taken him 2 years to crawl or 3 months to say open (and maybe 18 months to say milk because right now we're at "mu") but he has done it.

By the way, he has added chawchoe (chocolate), tair (stairs), tar (star), duh (duck) to his words.

Friday, July 15, 2011


I realize that I did this before. I posted a link to another site in an effort to garner support for a "foundation" that claimed to serve the special needs community. During the past week, the very same special needs community dismantled this "foundation" for failing to deliver on a promise made to Jacob and other deserving children. Nearly all parents are protective of their children but parents of a child with special needs are ferocious. My momma bear claws are always sharpened, mostly for protection, but I have been known to attack.

A few of the other mamma bears and papa bear(s) devoured the bunny "foundation" and have been empowered to begin the work of fulfilling the promise to the other deserving children. The work? Mission iPossible.

Thursday, July 14, 2011


I am SO guilty of rubbernecking. For several days I have been following the aftermath of a special needs iPad giveaway gone bizarre. The iPad that Jacob was selected to receive was never going to arrive so Grammy bought one for him. Already Jacob is saying pih (pig) and daw (door) - Peekaboo Barn Lite iPad App.

He is also saying kih (kick) and knee and albow (elbow) and wau (walk).

While Matthew has swimming lessons at the YMCA, Jacob and I are in the Parent/Child Water Adjustment Class. They both love the water. This week I bought a plastic pool to save me this summer. Six feet in diameter with about four inches of water and a dippy little slide makes two boys very happy. Matthew and Jacob were supposed to attend summer camp twice a week while I ate Pirate Booty all day. But Jacob cannot attend with his fractured foot and unwieldy boot cast so we share the Pirate Booty. After dropping Matthew off this week, Jacob was in his car seat saying brahbruh, brahbruh. Matthew's name is Brother to Jacob. He was already missing his brother before leaving the parking lot:(

I have been very interested in Jacob participating in a Special Olympics Young Athletes program because there are a limited number of athletic activities for children like Jacob in our area. Matthew has been loving the mini bar and tumble track in gymnastics at the Y.

Thursday, July 7, 2011

Annual IFSP

Mr. B., Jacob's physical therapist, wrote the following statements as part of his assessment of Jacob's gross motor skills... "On a good day Jacob's tendency to fall from an unsupported standing position is often sudden and relatively unpredictable. On a good day his protective reactions are often just enough to minimize the force with which his face hits the ground when he falls from a standing position." Anxious laughter? Gasp? Perfect depiction of the perils of Jacob's mobility.

Safety will be the greatest piece of Jacob's transition puzzle into the public schools this fall.

Jacob scored lowest in gross and fine motor skills as well as cognitive skills (which are determined in part by Jacob's expressive communication and fine motor scores), followed by expressive communication, receptive communication, and adaptive skills. Jacob's social emotional skills are not delayed.

two, free, fie, tsi, ay, nie

Jacob was counting this morning! Delayed? Developing!

Saturday, July 2, 2011

Two Left Feet

Jacob is wearing a "boot" after fracturing his right foot on Thursday. The break is very small and should heal quickly. "What happened?" He fell... rather... he was walking. He falls when he walks. He falls. He falls. He falls. A loose baby tooth here, a fractured metatarsal there, black and blue on his beautiful face. A walker would be great except that he would not tolerate it and his right hand could not operate it. A one-on-one aide? Great... except Jacob did not qualify for the social service programs, apart from Early Intervention, that are offered to disabled children. (Judicial appeal in process.) We need a plan. He needs more therapy.