Saturday, February 7, 2009

The Strains of Raising a Child With Special Needs

Since having John, our world has turned upside down. It has been quite an adjustment, of which we have not completed, on all of us to care for this little boy whom we have all come to love. But just because we have chosen to accept this little guy into our family and have committed to providing love and care for him doesn't take away the fact that it has been a strain on everyone.

Being new parents to a special needs child means that we are still in the adjustment period. After thinking about this, I'm not sure that there is a time when we will be able to say that we have adjusted to this life. I think that with each new circumstance comes a new adjustment. This past week when John was so sick, we got a taste of the medical fragility of John as opposed to our other children.

Our other 4 children have had to adjust to the fact that Dad and Mom aren't as readily available to them now as we were before John arrived. Sure, they knew that John was going to have Down syndrome and that he would be different and require extra help. But the reality of those words are difficult to see when you are a child.

I have found myself becoming more impatient with them since John. I realize that part of that is that I am stressed and have not fully accepted my new life. But with each new day, I am learning to let go a little bit more and accept that this is my life but I also have to keep going with my other children because they need me just as much as John.

Another stress that child, let alone a child with special needs can bring into the home and has brought into our home is the stress on a marriage. Joy and I have a fairly good marriage with all of the added stresses of our professions and of having 4 children which we had felt like we had overcome a lot of those challenges and had a plan in place to raise our children and still be able to manage our individual careers. And then came John.

John changed all the rules when he came. Joy and I would tackle this head on just like we have done most things in our life. Our plan of attack was for me to stay at home and provide his therapy while she worked as a Pediatrician. Even though we still feel like this is the best option for us and for John, it has come with a price. And usually, the price is relational. I tend to be a real intense person and have built a career on striving to provide better, faster results with my patients than the other therapists I work with. When working with one of my patients, I become so overly focused on my goals, that sometimes I tend to tune out other relevant things. And that is what I have caught myself doing at home.

Since I am home with John 24/7, I have sometimes noticed myself tuning out the other relationships in my life for the sake of making John better as it has always been one of my goals to have the best, most progressive Down syndrome child around. I would often catch myself, and still do at times, doubting Joy's care for him, afraid that she wouldn't work with him on the things that I would or wouldn't push him as I would. So I find myself today, sitting in this house with John just as I have done for the past 6 months devoted to him which there is nothing wrong but I have done so at the expense of ignoring others in my life.

After 6 months, and having a wife who loves me enough to be honest with me, I am beginning to see that some of the sacrifices made for John have not been healthy. I am learning to let go a little and relax. I am learning that to not only keep working with John, but to trust God for his development. Since I believe that He is the One who gave John to me, shouldn't He be trusted to develop him? This perspective may not give me more time with my wife and other children, but it will change my attitude toward them and hopefully make me more pleasant to them.

Children with special needs can take up a lot of time and energy. Let me encourage you not to forget the other relationships in your life. They need your time as well. I am learning that John will be just fine if he doesn't have my undivided attention 8 hours a day. In fact, he will probably become a much more independent child if I didn't provide that for him.


datri said...

Thank you for such an honest post. I so understand where you are coming from.

Lovin Mama said...

It felt good for me to read your post. I find myself questioning if things are hard because Goldie has DS or because I have 3 kids and she's a toddler...The answer is all of the above. It is always a struggle to find balance in our lives.

Hector and Jennifer Varanini Sanchez said...

Your honesty in this post is so appreciated. We too are struggling at this time to find the balance and I feel that our marriage is last in line right now in our list of priorities. We need to refocus on each other, so thank you again for the reminder.

Ruby's Mom said...

Thanks for reminding me not to let Ds become my "Idol".

Melissa said...

I COMPLETELY agree with you & understand where you come from!! I unfortunately am a parent that has to raise a child with DS on my own & it's NOT EASY! However, I do need to share this with you...

Dillon's 1st yr of his life, I was CRAZY with all of his therapies...Holly Cow, I drove myself completely crazy & I never set anytime aside for myself at all. Then came a time when I realized that I needed to take a step back & enjoy Dillon & my life for it was passing me by too quickly. I wasn't living my life happily at all & I was just so MYSERABLE!
So, I decided to set out a schedule/routine that included his PT/OT/ST/SPEC ED all w/in the week AND also gave myself a day where I had ALONE TIME to do whatever! It was SO hard to JAM it all in...but once it all worked out & I set time aside to those special moments for myself & for him & I chilled a little (for I REALLY needed to), That's when Dillon started to do some milestones??
It was amazing...I had to relax a little & allow the BT3 to their thing & enjoy him more and what do you know...he started to do better?
I'm so glad that I make sure to set time aside for myself for if I had not made that decision to do so, I may have started to resent Dillon.
It's REALLY hard to have a child with special needs, but it's also such a blessing for they teach us to become such better people in their own special way.

Thanks for the honest post...I love reading ones like these!!

Jeanette said...

Jay, I loved the honesty in your post. I was concerned about this as well when I became a SAHM and adding the DS volunteer work. I was used to outside validation and most importantly some not-mom time. At first I felt the walls coming in on me and was reeling from no Alone time. I was always on-duty! And with Sydney's diagnosis I felt like my world revolved around DS. I have since found that I need my releases which is keeping my family life strong and my relationships in check. I have my women's group acitivities where I am just Jeanette. I have a mom's group on Friday's where I am just a mom... not a mom with a child with DS... just a mom. I also have my once a month DS social group where I can keep DS in perspective. Finally, I have "dates" with my husband then mom-and-me-dates with my son. It sounds like a lot, but really it isn't. Also, my hubby and I have read some couples devotionals including "Couples who pray". I know this is a long comment. I hope that you find your balance. You and Joy need to find your rythm, then the rest will fall in line. Take care my friend. God is powerful, and he can lead you to His peace and joy.

Andy and Ellen Stumbo said...

Jay, I think we all can shake our head in agreement that we want our child with Down syndrome to be one, if not, THE higher functioning one.

Accepting Nichole having Ds for me needs to be that I accept it, even if she is on the lower end of development. Something that sometimes I have to struggle with. She will develop, in her own time.

Monica said...

You've come to an important realization about your self and in the process allowed many of us maybe to see something similar in ourselves. I've purposely taken a slower approach to therapies for John Michael than many. We have music once a week, but OT and spec. ed are every 2 weeks and speech now at once a month rather than quarterly. John Michael spends his days playing and being a 15 month old, engaging with his siblings or strangers out in the world on our outings. He has lots of free time to push cars throughout the house and chase them, take Legos out of the box, set blocks on our furniture (he gets to his knees) and chase the cat. These are all natural therapies in my mind and as they occur in his natural state. I won't tell you what to do, but I wonder what would happen if you ceased to work so hard as a therapist and just schedule a few hours a week and just enjoy where he takes you on his "down time". PS: I'm glad he's feeling better!

Becca said...

An excellent post, Jay. John will continue to develop and grow, even if it's not you standing by him 24-7. You absolutely have to take care of your own needs as well. I think I may have mentioned this before, but my husband goes out several nights a week for some "him" time, and it really helps him to keep the balance. On the weekends I try to take over with Samantha's care and entertainment, again, to give him a little bit of breathing room. Your reaization comes at a time when John is beginning to do more and more things on his own--the progression is natural. You'll see!