In So Many Words

Over the past few weeks, I’ve thought about things I wanted to write about or share here and just haven’t been able to get them down on paper, so to speak. Looking back, I realize that I let myself be completely overtaken by my anxieties about Michael starting kindergarten.

While trying to be proactive about the implementation of his IEP, I seem to have alienated the learning support teacher, who is his case manager, and couldn’t get anything out of the classroom teacher other than, “He’ll be fine.” Suffice it to say, that made me even more frustrated. I finally got to talk directly to the speech therapist last Thursday and we were able to connect really well.

It turns out the SLP has the most contact with him anyway, other than the classroom teacher. She has also been gradually talking to each of the special teachers (gym, art, etc) about what information to write on the daily report and giving them some ideas about how to help him understand what they are teaching or directing him to do. I felt a hundred times better after talking to her, and I am also seeing that the classroom teacher is beginning to understand how he takes in information and handles difficult or confusing situations.

Since then, I have been feeling so much better about school and have a lot more peace about everything. As things come up, I am taking note of them and also the different solutions we come up with so I will be even more prepared the next time we write an IEP. (Yes, I know we can change the existing one and we will if it becomes necessary.)

And I even pulled myself together enough to schedule respite for tomorrow night so that hubby and I can get out of the house for a little while! We are hoping to see the play at our church if there are still tickets available, but a movie will be good too if they are sold out. Unfortunately we didn’t know last weekend if we could make it, and his meeting last night went so late that when he made it from the prayer center to the main building, they weren’t selling them anymore. Either way, I’m sure we will have a good time.

It is so easy to focus all of our attention and energies on our child or children with special needs and forget about taking care of ourselves and our relationships. Here are some resources for these areas:

Personal

• More Than a Mom: Living a Full And Balanced Life When Your Child Has Special Needs by Heather Fawcett and Amy Baskin
• Parent to Parent USA has programs in many states to provide emotional and informational support by connecting parents with special needs locally. I would encourage you to call if you would like to be connected with another parent or to sign up as a peer supporter if you have a couple of years under your belt as a special needs parent. You can specify how often you will be available and turn down any request if you are unable to fulfill it at that time.
• Many times a local support group is a good place to be refreshed, whether it is through special events, speakers on related topics, or simply the chance to connect with other parents who “get it” for a couple of hours. You may need to search these out, but it is worth checking for a local chapter of a national organization such as the Autism Society of America (ASA).

Marriage

• The divorce rate in families with an autistic child is commonly reported at around 80%. In the US, the National Autism Association has launched the Family First Fund, which is offering qualified grants to be used for local, face-to-face marriage counseling. Applications for the current grant period are due by June 15, 2008.
• Married with Special-Needs Children: A Couples’ Guide to Keeping Connected by Laura E. Marshak and Fran P. Prezant
• Strengthening Relationships: When Our Children Have Special Needs by Nicholas R M Martin

In researching this area, I found many more books dealing with siblings of children with disabilities than these topics, and I will follow up tomorrow with a separate list of those.