Mikey's SPD Journey

My brother, Mike married a girl 20 years younger than him. She comes from a very dysfunctional family which includes drugs, alcohol abuse, and abuse in general. No one in her family has an education and ADHD is an issue. One of her brothers can't, won't work. They were married 4.5 years and all of a sudden she wanted a divorce. Mike was an on-the-road truck driver and she made him quit. They have two children: Hattie was 3 and Mikey was 2.

His ex knew there was something wrong with Mikey and got him into the birth to three program, but never kept the appointments, so it took a long time for them to evaluate Mikey. His Dr told her and her mom that if they didn't quit smoking Mikey would die; her mom said "No one is going to tell me what I can or can't do!" Eventually, my brother Mike got primary placement of the kids. He'd get the kids Thursday through Monday, so we set up the birth to three people to come to our apartment Monday morning.

When their mom found out she decided to show up early and the speech therapist and teacher weren't impressed. Mike got custody of them in one evening, we had an hours notice and they came with NOTHING!! We immediately got the early intervention staff to come twice a week!! Mikey could hardly walk, his coordination bad, they thought he was deaf, they both were soo congested. It was a 24 hour nightmare. Neither child slept; so insecure and afraid!!

Mike works full time and lots of overtime in the Spring and Fall. I worked 20 hours a week and now am down to 12-15 hours a week. Hattie and Mikey had already bonded with us, as the family had stayed with us a year or so before. Mikey had to be rocked in an office chair with a blanket over his head for hours and hours at a time. Mike put Hattie in a daycare/preschool fulltime and Mikey went 3 days a week so he could be home the other two days for his early intervention team to see him.

He has been diagnosed with Global Developmental Delays and speech apraxia. When he turned 3, of course Mike registered him for Early Childhood. Since he turned 3 in May we had to find a clinic for speech therapy for the summer. His early intervention speech therapist took a job at a clinic about 45 minutes from our apartment. It was during his evaluation that the OT observed Mikey and told us that he had sensory issues and asked us to fill out a checklist. We filled out a few: his daycare staff, mom and I, and Mike and his friends. Unfortunately, he hasn't been officially diagnosed yet, but the OT at the clinic has kept treating him twice a week for over a year "because he needs it soo bad". It has helped tremendously!! He can say 2 words at a time and his aggressive behavior has gotten much better.

Last week was rough in the beginning; he spends every other weekend at his mom's and she has NO interest/desire to keep him on a routine or to personally know about school or therapy. We ordered a weighted blanket from Lisa (www.sensorycritters.com) and saw results in a day or two! Mikey was calmer and more centered.

We now have a quiet drive to therapy (45 min drive one way). I have arranged my work schedule so I can be free to take him twice a week. My mom has a heart condition and due to a sinus surgery gone bad has a leaky eye and doesn't feel safe driving that distance. And, sometimes Mikey needs help staying still/quiet in the van, so it isn't easy or safe for her or Mike. He loves following big trucks and talking on my cell (pretend). He also loves it when I turn the wipers on and lets me know when the windows are clean. He likes to have the radio on, Anne Murray, soft music is his favorite. We've been told that we need to get him into the listening program; he used to be TERRIFIED of the headphones. But, now he can probably tolerate them. We're hoping this will help him further.

And, that's only a part of the story... I have CP (mom had open heart surgery when she was 6 months pregnant with me; the odds were against us in September of 1964). I can relate to all these kids and "being different". It's not fun. My Mom is my rock as I think I am hers. Mikey's mom and grandma, on the other hand, have tried just about everything possible to get the kids away from us. They accused me of sexually assaulting Hattie. I'm the number one enemy for them because I put the kids first and they don't like that. Hattie is very attached to me, and Mikey is to my mom.

They tried and still try to stop the attachment the kids have for us, but I don't think that will happen. I backed off, put no pressure on Hattie and let her come to me for things. I say nothing negative about them; just want no contact with them at all, but will be pleasant if I have to. I have blamed myself for the trauma that Hattie and Mikey have gone through thinking that they'd be better off if I weren't around, but I realized that that is what their mom wants and it' not true.

My Mom and I have had to teach/show my brother Mike that he can be a dad and he has really stepped up to the plate (which some men would have trouble doing). His two kids adore him and NEED him to be there so desperately. Everyday is a learning/growing experience for all of us. All of us have obstacles to overcome and we can... with support, understanding, and lots of positive energy!! These kids can't fight for themselves so I/we have to!!

The update: Mikey is 5 years old now. He is making great progress in his speech. Dora has helped with that; Mikey enjoys watching Dora, Kipper, and other cartoons. He is putting two consonant sounds together: "st", "pr", etc... The end sound comes out on words such as "hat", "backpack". We are all very excited about this!

Mikey smells everything and if he doesn't like the smell he won't eat or have anything to do with whatever it is. He is sensitive to clothing , will not wear jeans, and it is very hard to find a winter jacket he will wear. Mikey will now put new shoes on when we buy them. He will be staying in the Early Childhood program at school, as the staff agreed with us that he isn't quite ready to go to kindergarten. We have been very lucky to have been in a great school district that works with us in giving Mikey a wonderful education.

Hattie is in Kindergarten doing well and is learning to read and write!! She loves school and loves to learn. She comes home and plays teacher. Unfortunately, their mother still fights us and tries to cause trouble. We just try to keep consistency for Mikey and Hattie and to let them know they are both loved no matter what. Mike said that he sees a certain look in Mikey's eyes before he has a meltdown and wants to concentrate on being able to give him what he needs so he can center himself again. Mike also has a girlfriend who has been excellent in handling both children and is now reading "Sensational Kids". We are all learning that we have to work as a team and support each other. The kids need all of us.